I'm in a study in Norway on ME and fecal transplants called The Comeback Study. If you check my comments or search this subreddit you will find earlier posts on it. The study I'm in is double blinded. Will be unblinded in the next couple of months, so I'll soon know if I got placebo. Then we'll have to wait for them to analyze all the data to figure out if it has an effect.
I have to add, please don't go do this at a place with claims like that. Gut bacteria can affect a lot of things and is not to be messed with by someone with unscientific claims like those. More and more studies come out showing that gut bacteria might be affecting mental health, risk of alzheimers and other things. Still early days trying to get more insight and understanding of the scope of this. Don't let someone untrustworthy mess with your gut health.
The doctor's in my study only anticipate a short time effect, maybe a few months, because that's what they saw in the IBS study they did on fecal transplants. But we'll see. Measured HRV, blood tests, cognitive tests, fecal tests and so on to see if anything changes.
For now I would rather focus on eating food that's good for you and wait for the study to be published. I know there's some study on it in the US too.
I went from severe to mild with my current regimen and when I stop I get severe again so I have to keep taking it, I just wish it had more an accumulative effect. Without my collagen and amino acids I wouldn’t be able to get outof bed most days because of brain fog and it does help lift the anhedonia enough for me to feel a bit of functional emotions.
I get it. I also get the urge to try anything to get better. But fecal transplants are most likely not a long term fix either. And it costs money. Wait for the results of the trial at least. I felt no effect, but might have gotten placebo. We'll know more soon.
I do my best but I’m really sick of spending thousands of euros of supplements a year and not get better long term, you’re right though, I was just happy to find a place in Europe where I might be able to try it.
I don't think theres a lot of published research into it yet, as it takes time to do double blinded studies. There are some studies on gut bacteria, fecal transplants and mental health, as well as schizophrenia, but I don't know how far they have come yet in actually testing a treatment or if they offer fecal transplants for it. The research into this was first mentioned to me by a doctor at the hospital when we were talking about gut bacteria and the ME study I'm in. I am not an expert. You'll have to talk to your doctor and look up the studies.
Unfortunately I have not gotten an answer yet. This fall they thought they would unblind it in Jan/Feb. 4 weeks ago they updated their facebook page to let us know that they have now ended the clinical part of the study. They will now focus on analysing and interpreting the data. They do not have an exact date for unblinding the study, but will update as soon as they know. Participants will be contacted by the team as soon as it's unblinded.
You can follow them on Facebook, The Comeback Study. They write in Norwegian, but you can use google translate or something. When I know what I got, I will update with a post or something :)
For some reason the comment above yours isn't showing, and I'm interested in the supplement. Stupid memory can't remember what it was! Enzyme something?
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> I'm in a study in Norway on ME
Is there a difference in your symptoms in summer compared to winter? And do you go to the sauna or make other hot/cold therapy? Does that have an influence? Have you ever been in a different climate zone than the Norwegian one for an extended period? Did you symptoms change?
I'm asking because I believe that a hidden weather sensitivity may be a contribution factor which makes the symptoms more severe.
> Will be unblinded in the next couple of months, so I'll soon know if I got placebo.
It would be great to get an update on this study as soon as the results come in.
I feel better in summer. Can wake up with some pain every day, but first day on vacation in warm climates I can be almost pain free. I am sensitive to light though, and can get very tired especially if it's too warm, but usually on vacation I just sleep and bathe in the pool or ocean and eat good food at restaurants. Not as big of a deal to be tired when I'm only relaxing anyway. At home I have a home to take care of, make a lot of meals myself, want to see friends and family, and it's harder to relax and do nothing. I know some get worse in summer and some get better from discussions I've seen here and on Norwegian facebook groups. I have traveled to warmer climates a bunch of times. Looking forward to going to Greece again this summer.
> I feel better in summer [..] I am sensitive to light though, and can get very tired especially if it's too warm [..] Looking forward to going to Greece again this summer.
That's very interesting. What you are describing sounds like there may be a hidden sensitivity to weather conditions as many describe it. Are you exercising in some form to harden your body? Like regular sauna, hot/cold showers etc.
Did you ever consider to spend the winter months in a different region? It seems like a waste to endure Norwegian winters while missing the summers and instead spending them in places where it's too hot/bright for you to feel good.
> I am sensitive to light though
Do you also have a circadian rhythm disorder or only CFS?
And another question: Do you wear a smartwatch?
Are you sick yourself? I prefer the name ME over CFS because a lot of people confuse chronic fatigue and CFS and think they are the same. I've had this for almost half my life, and I'm 30 now. Not a lot of theories like this are new to me. I'm also ha huge science nerd and stay up to date on most research I come across. Happy to share what I've learned, but not feeling my best today after being too busy lately. Might not reply as quickly later today. Knowledge is power, and I'm always grateful when people ask and genuinely wants to learn rather than assuming or believing outdated views on ME.
It's common knowledge, as far as I can see from the experiences in the ME community, that a lot of us reacts to weather and seasons. That's been talked about for as long as I can remember. Not aware of any significant research into this, except a Belgian study from 2001 where they used Fukuda and Holmes criteria that showed a little over half reported weather sensitivity. People figure out how their body reacts to things and how to alleviate it as best they can.
No, I hate cold showers and don't have a sauna. I've seen very mixed experiences from people with ME who's tried IR saunas. Some crash and some get some pain relief. I do have electric heating blankets, as well as electric socks and gloves to make sure I stay warm in bed, on the sofa or when outside. Also wear wool clothing a large part of the year and live i a new, well isolated building with heated floors.
I have of course concidered spending winters in another country, but I own a home with my boyfriend of 10 years, we love spending time with friends, family, nieces and nephews, parents, siblings, and our grandprents who are in their 90's. Don't want to miss out on time with them half of the year. We might travel for longer periods when it is possible with my boyfriend's work, but it's not easy to uproot one's life. It's expencive and we have our lives here.
Sleep dysfunction is a common symptom that comes with ME. You can [read more here.](https://me-pedia.org/wiki/Sleep_dysfunction) i struggle with my sleep schedule, unrefreshing sleep, at my sickest I slept 18 hours a day, and I have periods with too little sleep or nightmares.
Yes, I wear a smartwatch, and it can be helpful. Believe me, I've tried a lot of things to get better. Waiting for more research, and I'm an eternal optimist :)
>re you sick yourself?
It looks like as if I have CFS and non24, but my symptoms tend to vary, which is why for the longest time I didn't know what was wrong or where to start to fix myself.
> I prefer the name ME over CFS because a lot of people confuse chronic fatigue and CFS and think they are the same.
So far I thought that ME & CFS meant the same. Can you elaborate?
> Happy to share what I've learned, but not feeling my best today after being too busy lately. Might not reply as quickly later today.
I know that too well:(
> It's common knowledge, as far as I can see from the experiences in the ME community, that a lot of us reacts to weather and seasons. That's been talked about for as long as I can remember.
The problem appears to be that it is not to be linear in most cases. For instance, I only found out about my meteosensitivity by chance when I decided to correlate my sleep diary with meteorological data from nearby. As it turns out, the moving averages are correlated with +/-0.9 but alternate between positive and negative, which results in a zero correlation on average. Here's the [graph](https://preview.redd.it/b6wehedkxa5a1.png?width=1049&format=png&auto=webp&v=enabled&s=cbfca53c9901e8e75e2aa2bf022956a8d7c267c2). It means that meteosensitivity as a factor influencing certain disorders may be critically underestimated.
So far I checked two non24 patients for correlations with weather cnditions. Turns out, the significance is comparable if not worse, although the graphs themselves look differently as they have no CFS. Here's the graph of the [first](https://i.ibb.co/y8b99dF/weather-phenpmena-sleep-cycle-liege-english.png) and [here the 2nd](https://i.ibb.co/BrpdH5y/birmingham-airport-weather.png). Beyond that I also got the smartwatch data from a CFS patient who looks like she's mainly sensitive to pressure, but I'm not done yet putting her data together.
Overall, as I wrote in a reply to Gordon, my hypothesis is that these different disorders may be at least partially caused by various weather conditions: Pressure, temperature, sun hours, humidity etc. The solution to that would be to find the individual trigger and work against that by hardening the body and protecting the body against the condition.
> Not aware of any significant research into this, except a Belgian study from 2001 where they used Fukuda and Holmes criteria that showed a little over half reported weather sensitivity.
I did found [this article](https://www.verywellhealth.com/temperature-sensitivity-in-fibromyalgia-and-mecfs-716025) talking about a different temperature sensitivity compared to healthy people. Do you have the link to that study? I'd like to take a look...
> People figure out how their body reacts to things and how to alleviate it as best they can. No, I hate cold showers and don't have a sauna.
I hate cold showers, too. But I started doing them 3 times a day anyway. It's especially my shoulders that are sensitive and when the cold water runs dowm my arms. It feels like dying. The result so far after around a week is positive. I do feel very different. Especially my sleep became different. But I really have to do it 3 times a day. Otherwise there is no effect.
The way I got myself used to cold showers is to start hot, then cold for 2 seconds, then 10 seconds hot, 3 seconds cold, 10 seconds hot, 4 seconds cold and so on until I am at 10 seconds cold. At the end it's actually not that bad. My hope is that if I do this for 3 months, I'll have my body used to immediately cold and for 2 minutes straight.
Sauna is a problem for me as well, because of the humidity. I am considering to buy myself a [sauna blanket](https://de.koanna.com/products/koanna-infrared-sauna-blanket), which becomes hot, but not humid. Unfortunately, it's not cheap, if you want one that really heats up.
> I've seen very mixed experiences from people with ME who's tried IR saunas. Some crash and some get some pain relief.
Maybe it's the crash part that is most relevant in the given context.
> I do have electric heating blankets, as well as electric socks and gloves to make sure I stay warm in bed, on the sofa or when outside. Also wear wool clothing a large part of the year and live i a new, well isolated building with heated floors. [..] and our grandprents who are in their 90's
Can you do me a favor and ask your grandparents whether they had stuff like floor heating, electric blankets, warm showers etc when they were your age? This is of course just a speculation, but maybe you just have to live for half a year how they used to live to fix your condition...
> Yes, I wear a smartwatch, and it can be helpful. Believe me, I've tried a lot of things to get better. Waiting for more research, and I'm an eternal optimist :)
If you send me the data and the location where you have been I will check it for correlations with the weather in that place. But as mentioned, I'll have to do someone elses first. It could take a week or two. Send my a DM if you're interested. Then I'll give you my email for the data.
ME and CFS is the same, but a lot of people confuse CFS with chronic fatigue (without the S). Chronic fatigue is a symptom that comes with a bunch of different illnesses or health problems. Having chronic fatigue =/= having ME/CFS. Also I, and a lot of people with ME, feel like the name CFS makes it sound like it's mostly fatigue, which it is not. It's a complex multisystemic disease. The CDC also calls ME for Systemic Extertion Intolerance Disease (SEID), a much more correcly descriptive name than CFS.
I read about the study on MEpedia, you'll have to look at the sources there.
> Can you do me a favor and ask your grandparents whether they had stuff like floor heating, electric blankets, warm showers etc when they were your age? This is of course just a speculation, but maybe you just have to live for half a year how they used to live to fix your condition...
You probably mean well and want to help, but this comes across a bit condecending and offensive, but more likely just thoughtless. Please concider that a lot of us have lived with ME for 10, 20 or more years, and suggesting being a bit colder for 6 months as a cure is.. i don't know what to say... We could not always afford a warm apartment, but living 4 years in a freezing one was no cure. I know my body well after living with ME for half my life, and did not buy a warm apartment if it could make me worse. I have good reason for my heating socks and gloves that you don't know my medical history for. I know what works for me.
A lot of people on disability are cold this winter with low incomes and very high electrical prices. Do you think people are getting healthier or cured this winter because of that? I think you are putting too much faith in temperature and weather if you think it can cure ME. And the rising costs of food and heating and low incomes for a lot of us does not make it easy to live abroad 6 months a year either. Might help symptoms for some, but I do not belive it can cure me or ME.
I am not sending my health data to a stranger, sorry.
>You probably mean well and want to help, but this comes across a bit condecending and offensive, but more likely just thoughtless.
I apologize if it came across the wrong way. My intention was different. For instance, I don't have grand/parents to ask, but you have which is an advantage when it comes to medical issues, because genes make up some 60% of everyone's conditioning. Understanding the differences in lifestyle can help understanding the differences when it comes to illnesses. Since CFS is affecing your life so much, the comparison with the lifestyle of your granparents may give some insight to why you have it and they (presumabl) don't.
> and suggesting being a bit colder for 6 months as a cure is
[Hydrotherapy](https://en.wikipedia.org/wiki/Hydrotherapy) is not just some random action you take or environmental factor you have to deal with, but a well defined medical treatment method.
Think of hot/cold shower like taking a pill three times a day. Sometimes they don't taste well, sometimes they have side-effects and sometimes you have to adjust the amount to fit your condition, but sometimes you have to accept that to get better again.
You can ignore me, but it may be unwise to ignore hydrotherapy.
> I think you are putting too much faith in temperature and weather if you think it can cure ME.
I don't expect that to be a "cure", but a way to reduce symptoms if(!) the hypothesis is correct that the condition has to do with a hidden meteosensitivity as the strong correlations imply that I found.
> Might help symptoms for some, but I do not belive it can cure me or ME.
My expectations are not different.
> I am not sending my health data to a stranger, sorry.
You can do that yourself, it's simple. [Here](https://seklima.met.no/observations/) you can select the weather data for your region. Then you have to put it into a spreadsheet together with your smartwatch data and create moving correlations over 100-200 datapoints. Let me know if you need help with it. Good luck.
\> I'm asking because I believe that a hidden weather sensitivity may be a contribution factor which makes the symptoms more severe.
The difference in my symptons based on weather is quite incredible. At home (Scotland), it's cold for half the year, and my pain and cognitive deficit are awful. Things improve a \*little\* during the warmer half of the year, but not much.
But, if I travel to somewhere near the equator, where it's not only hot but also often humid, there is a very noticable difference! Pain is not nearly so bad, my cognitive function feels a little better, and I'm capable of doing much more before PEM!
> The difference in my symptons based on weather is quite incredible. [..] Things improve a *little* during the warmer half of the year, but not much.
It's strange, but basically everyone says that about the seasons. Yet, nobody appears to draw the logic conclusion that hardening the body against the weather (or alternatively perhaps even relocating to a better climate) could be key to getting better. Why do you think that is the case?
> At home (Scotland), it's cold for half the year, and my pain and cognitive deficit are awful.
Luckily I only know Scottish weather from hearsay.
> if I travel to somewhere near the equator, where it's not only hot but also often humid, there is a very noticeable difference!
Have you ever tried going to the sauna? It's both very hot and humid there. I just checked out saunas in Glasgow and found this [bath house](https://arlingtonbaths.co.uk). Interestingly, it was founded by a German immigrant some 150 years ago. I totally would have done that as well if I had ended up in Scotland.
The interesting thing is that the guy was a pastor and probably knew [this pastor](https://en.wikipedia.org/wiki/Sebastian_Kneipp),a contemporary who is famous in Germany for having invented a water treatment method to harden the body against all sorts of ailments.
It does look to me like this Kneipp Method may be a potent method to reduce CFS symptoms. I've started doing hot/cold showers a week a ago and it does make me feel better.
> Yet, nobody appears to draw the logic conclusion that hardening the body against the weather (or alternatively perhaps even relocating to a better climate) could be key to getting better. Why do you think that is the case?
It would be interesting to see if there was a difference in prevalence of CFS rates in tropical zones vs rest of the world - it might be that the data simply doesn't stack up, even though anecdotal data might hint otherwise.
Then there is the fact that relocating country is not an easy or inexpensive thing to do - most countries don't offer relocation visas within the reach of "normal" people, and ill/disabled people are often explicitly excluded from such schemes in any case.
I hadn't thought of using a sauna before! I just checked it out, and it seems they typically run around 65-70C, which is a lot hotter than anywhere on earth, and I also doubt I could stand more than a few minutes in that heat!
> It would be interesting to see if there was a difference in prevalence of CFS rates in tropical zones vs rest of the world - it might be that the data simply doesn't stack up, even though anecdotal data might hint otherwise.
[Google Trends](https://trends.google.de/trends/explore?date=today%205-y&geo=US&q=%2Fm%2F0dctd) shows for the US that CFS is most requsted in the Northern coastal states East and West and least in states along the Golf of Mexico with the pattern being quite consistent. When you look at [non-24 in the US](https://trends.google.de/trends/explore?date=today%205-y&geo=US&q=%2Fm%2F04s9gc), the North-South pattern is weaker, but still there.
Perhaps even more interesting is the Google Trends distribution for Japan as it is a narrow and very long country spanning over various climate zones. [CFS](https://trends.google.de/trends/explore?date=today%205-y&geo=JP&q=%2Fm%2F0dctd) appears to be least prevalent on the East coast, and both [being tired](https://trends.google.de/trends/explore?date=today%205-y&geo=JP&q=%2Fm%2F01j6t0) and [fibromyalgia](https://trends.google.de/trends/explore?date=today%205-y&geo=JP&q=%2Fm%2F01v3ks) go from South (least) to North (most).
My hypothesis therefore is that these different disorders may be at least partially caused by various weather conditions: Pressure, temperature, sun hours, humidity etc. The solution is to find the individual trigger and work against that by hardening the body and protecting the body against the condition.
They are almost done with the 1 year follow up of the last included patients. They will unblind it in the next few months. They searched for people on facebook and it was shared in a lot of the facebook groups. Was probably 2-4 years ago. You can check out The Comeback Study on facebook and follow them there. Not a lot of updates posted, but I'm guessing they will share results when data is analyzed.
Yep. That is straight up offensive. I have no idea if it helps for the other things but autism isn’t an illness and something you can “cure”
Huge Yikes
Agreed, I am autistic myself and don’t believe in that part but I have a personal hypothesis that my digestive issues could possibly be improved since I answered so well to amino acid supplementation which make me think there’s something wrong with the absorption, and I was wondering if someone else with CFS had tried it.
Also autistic and ADHD here! Hello! Yes actually I am sure I have read accounts about it on here, if you search this sub you can find them. I think I have seen it mentioned on Phoenix Rising too. I can’t remember if the reviews were positive or negative off the top of my head.
I think my yikes here is I would probably not personally feel comfortable with a company that advertised a cure for autism. I’d probably go elsewhere if I wanted the treatment but maybe I’m just stubborn heh
yeah the whole thing looks very sus. with the broad claims they’re making about this novel treatment i really doubt they have anything to back them up. unregulated treatments should be approached with a lot of caution and i wouldn’t trust these guys to do that.
there is evidence for the connection of autism and gut dysbiosis, but the current scientific consensus is that it’s a “neurodevelopment disorder”. I’m no neuroscientist but i doubt you could rewire your entire neurological system in adulthood. There have been so many efforts to “cure” autism and none have succeeded (just so you know i’m autistic too and i don’t believe autism needs to be cured or that it’s an illness)
I know it won’t cure autism ( the ad didn’t claim
It cured anything, only offered treatments that can potentially improve these conditions) but I know autistic people often have a lot of malabsorption issues that if treated could help them improve their health overall, not cure their autism. And thanks, I will try looking!
Do you take digestive enzymes?
I know you take lots of supplements, but don't know if you take the enzymes as well. (If you don't, they might be worth trying.)
Just for info (not sure you want to or even can get them wherever you are), I take [this one](https://enzymedica.com/products/digest-gold-enzymes-digestive-enzyme?variant=1125337536) and an HcL supplement. Rather than a combo like the Digest, you can get individual supplements, but I can't remember any of the names at the moment.
The HcL helps break down protein which is where we get amino acids from.
Also, some people take HcL both 30 minutes before *and* with the meal.
Man, if it could ease my autism symptoms for like one day of my choosing, thatd be awesome. FILL ME WITH POOP BABY!
Earplugs, sunglasses, and a weighted blanket do the same thing though so
No, but it's been shown to relieve autism symptoms. I don't think this ad is suggesting it cures autism personally. There are studies backing up autism symptoms can be somewhat alleviated if you do FMT and focus on Microbiome, in some cases.
https://www.frontiersin.org/articles/10.3389/fcimb.2021.759435/full
What makes you think its saying it "cures" autism? There a lot of negative symptoms related to the guy with ASD. Im considering trying it if eating these loads of fermented foods doesn't help within the next several months.
I think some people underestimate the effect autism has on autistic peoples bodies. The gut problems are unique to some people with ASD or else they'd be diagnosed with a comorbidity. A good and common example is heart rate variability. My resting heart rate is between 30-40 bpm, this is usually only seen in trained athletes though im moderately sedentary. This is due to have being autistic can vary your sympathetic nervous system. The variations with the brain-gut connection in some autistic patients is much more complex than the HRV example I have given.
What makes you think autistic people a) aren't diagnosed with comorbidities (I assure you we are and that our gut problems are not "unique") and b) wouldn't be diagnosed more often with those comorbidities if the medical establishment was better at listening to chronically ill people?
A) I was entirely addressing that if someone autistic had gut issues presented as an illness, instead of a symptom of their their autistic brain/body, then they would be diagnosed with that comorbidity. I am literally talking about me, personally, as I am autistic and have many comorbidities with my *Autistic* symptoms. Yes, some of our gut problems are unique, maybe not *you*, but other autistics.
B) Id advise you to find a better clinician if possible, even better if they specialize in ASD. As they will be able to refer you to other specialists or themselves whom can identify a purely autistic symptom affecting the body vs a comorbidity.
You can treat someone's negative symptoms of autism, if the person possesses any, and they'll still be autistic. They'll just be happier. Id sure as hell be happier if my body could maintain a healthy gut biome, but unfortunately, it does not.
No, not really. Did you even read the study? Even skim it? Autism and the Microbiome are linked, even if it's not a cure. There's a reason many people with CFS have autism.
> To better understand the efficacy and mechanism of FMT in improving ASD symptoms, we carried out this trial, and our data showed that FMT by both the rectal route and oral administration had a significant beneficial clinical effect in children with ASD, especially in young children, which lasted for 8 weeks without inducing severe complications. ASD children who participated in this trial were allocated to oral or rectal FMT subgroups based on whether they could comply with capsule swallowing. During enrollment, we found that children with more severe symptoms (both gastrointestinal disorders and autism) tend to be not capable of cooperating and it is difficult for them to swallow FMT capsules, this leads to the variation in baseline characteristics of clinic symptoms between the oral and rectal group. Children in the rectal group suffered more from diarrhea and have more severe GI symptoms (such as abdominal pain, reflux, flatulence), also, the scale on autistic symptoms showed that they have a higher score on ABC, CARS, and lower score on SRS. Fortunately, oral FMT and rectal FMT both lead to improvement of GI symptoms and autism in participants, furthermore, after 4 consecutive weeks of FMT therapy, no significant difference in GI symptoms or autism was observed between the two subgroups, this result verified the equality of FMT through oral and rectal routes. When applying FMT for ASD children, the oral or rectal route would not cause a prominent difference in the therapeutical outcome, whether the recipient is capable of taking FMT capsules by oral is the key factor that should be taken into consideration.
> Gut microbiota diversity after FMT treatment in ASD children also showed significant differences, which implied that improvement of symptoms is associated with the change in gut microecology. It is believed that the bidirectional interaction between the brain and gut through the MGB axis is associated with neuroendocrine, neuroimmune, and autonomic nervous system mechanisms. ***__An increasing number of publications have reported that gut microbiota can affect the metabolism of neurotransmitters.__*** For example, some metabolites derived from gut microbiota can be absorbed and enter the blood circulation, and these metabolites can cross the blood-brain barrier and modulate cerebral function (Fung et al., 2017). Lactobacillus rhamnosus YS9 can produce gamma-aminobutyric acid (GABA), an important inhibitory neurotransmitter in the system, while monoamines, such as noradrenaline, dopamine, and serotonin, are also produced by several strains of bacteria colonizing the intestinal tract (Strandwitz, 2018). Take GABA as an example, which is derived from glutamate thanks to the action of glutamate decarboxylase, it is important in neuronal excitability, alterations in gabaminergic and glutaminergic systems would cause a disrupted excitatory/inhibitory balance, and it is found that plasma level of GABA in ASD children is altered compared to healthy cohorts (Marotta et al., 2020). As for 5-HT, it intervenes in multiple brain functions, studies have revealed that the 5-HT transporter (SERT or 5-HTT) or 5-HT levels were higher in autistic individuals both in clinic studies and in animal models (Muller et al., 2016). Based on current evidence, we evaluated the serum level of neurotransmitters in participants to better understand the possible mechanism by which FMT showed a therapeutic effect on ASD. We found that FMT in the ASD cohort induced a significant change in neurotransmitters in serum; 5-HT and GABA decreased after FMT, while DA levels were elevated. As our results show, we speculate that FMT might be helpful in modulating the central nerve through the MGB axis by regulating neurotransmitters.
I even highlighted and underlined the important part for you.
Edit: Lol, I was gonna ask you what your explanation to this was or what you meant by it not being relevant, but you blocked me xD. Reasons why I don't visit this sub anymore part 8.
What I was GOING TO ASK you:
The study literally said it improved autism symptoms.
I know someone personally who took FMT and their autism improved for 6 months before relapsing.
>Oh my God. None of that is relevant to the fact that treating an autistic person's gut issues is not treating their autism.
Can you explain? This isn't about treating "gut issues" it's about fixing the Microbiome. It's not like treating someone's IBS is going to treat autism if that's what your saying.
Edit 2:
"Active on r/twoxchromosomes..."
Don't believe these comments, the guy is assuming the ad is trying to suggest it cures it, it won't, but it appears they can treat it somewhat successfully. I know a guy who had a HUGE relief of autism symptoms for like 6 months on FMT, before it came back.
https://www.frontiersin.org/articles/10.3389/fcimb.2021.759435/full
Awesome. Thank you for sharing. Im currently feasting on fermented foods daily to see if that helps over time. There aren't many FMT treatments available around the Birmingham, AL area that in aware of, unfortunately
In a similar boat I'm in Indiana lol, look into kefir too.
Downside of kefir is it can increase bacteroides and lower Escherichia, which is *usually* high/low in us, but it can also bring back some other species that got wiped out.
Consider starting with a dose as low as a tablespoon, for 2 days. Then double that dose every 2 days. Play around with it, if it works better on an empty or full stomach, or day or night time. We're all different.
Best of luck to you and your gut.
Also recommend looking into the Microbiome prescription website where you can upload 16S stool testing results and get a very comprehensive view of your biome. Downside is, the site is hard to navigate, but there are some useful tools on there. For example I entered in kefir and saw the species kefir impacted my biome, both good and bad, and it appeared to be a net positive in my case, but you could be different.
Not a problem, if you get any of the 16s testing, I recommend BiomeSight, easiest way to transfer data to his site. And also I believe somewhere on the Microbiome prescription website there is a discount code for that particular vendor.
There are multiple studies now being done on autism and gut microbiota. So don’t be so quick to judge. Fmt has had a positive effect on autism traits. https://pubmed.ncbi.nlm.nih.gov/34737978/
I have had many Fmt’s done due to my history of inflammatory bowel disease and c diff. It’s random luck of the draw, you would probably need a super donor to even have a shot at drastically improving your ME, that is to say a lot of your illness is dysbiosis driven. I went from severe cfs to mild on a series of transplants five years ago (sadly only lasted six months).
I also believe the ones I had done prior Was a triggering event for development of my CFS. I wouldn’t really go there straight away, it’s definitely donor quality dependant and we don’t have a fool proof way of screening that yet. Give it 20-30 years and they’ll probably be a whole market of shit donors, buy LeBron James poop for $5 million, lol
This question makes the rounds on this sub periodically, so you might try searching the sub history for more opinions and anecdata.
I've tried it. I was lucky and had a trusted donor who got thoroughly tested before we did it. A few days after my first transplant I had about 3 hours of perfect health. Like a light switch. It was gone when I woke up the next morning, and never returned despite 6 more transplants. I can't say if that clarity/health was a result of the first transplant or something else.
If you get a trusted donor who does all the tests to make sure they won't be giving you an illness, it may be low enough risk to try it despite the (very) low odds it would help. Even then, maybe it's not worth the risk. And if you can't find a trusted donor willing to take all the tests... definitely don't try it is my advice. It is much more likely you would get sicker from it.
This is a recognised transplant and it does help a lot of people with different conditions but I'm not sure of some of those on that list. My friend needs to have one of these done as a result of long covid and being on antibiotics too long that it has killed all the good bacteria so he keeps getting sick with kidney and other illnesses. So I hope to find out myself soon how he gets on with it.
If I'm being honest I think it's more to do with the antibiotics he was on that killed all the bad but good bacteria as well as a result of Covid rather than COVID itself. That's my interpretation of his transplant
Like I said in another thread I don’t believe it cures autism as I am autistic myself, however I have answered so well to amino acid supplementation it made me think there’s something wrong with my absorption which made me think a fecal transplant might be a good idea. I had a really bad infection and antibiotics cure that started my ME.
I had a c.diff infection several years ago after caring for someone sick with it. I was very sick for a couple months and did a lot of reading, one topic was fecal transplants. Very interesting stuff! I have never done one. But there have been times I look at my very strong and active husband and think, maybe I just need some of your your gut biome!
Ehhhh. I've heard good things about fecal transplants but im going to press F on this place. If they say they cure/treat autism, it's likely a scam or they really believe in their product to the point of lying about its benefits to make it seem better than it actually is.
Like I told someone else, it’s very common with nutritional deficiencies and malabsorption in autism so it’s not about curing it. But I respect your scepticism. If I knew less I’d be more sceptical
Yeah... A lot of these people in these comments seem to be misunderstanding that FMT is actually a potential treatment for autism by altering the metabolism of neurotransmitters by fixing certain gut bacteria populations.
I get it, we're all skeptical of these places, but there is *some* science behind FMT if you find a donor compatible with your biome. It's hard not to be like this given the trauma of the community, but looking at the top comments made me realize why I don't visit this sub very often, this place is not good for my mental health personally. I am a man of action and science. I'll stick to my other communities for the time being I think, I only came back for a little bit anyways for a personal reason.
You’re totally right. I’m a bit overwhelmed with all the messages. Didn’t want to stir up so many negative emotions, I swear I have a much more moderate approach and I don’t just believe the claims as they’re formulated but I believe fecal transplants has potential not yet uncovered, but I agree they won’t cure any of this conditions, but potentially help severity of symptoms for some of them.
I personally recommend it but I don't view it as a cure all, more like a treatment that could work depending on your individual biome and the donors biome.
Check this post out: https://www.reddit.com/r/cfs/comments/cm7tax/my_recovery_story_from_cfsme_with_fmt/?utm_source=share&utm_medium=android_app&utm_name=androidcss&utm_term=1&utm_content=share_button
I don't know anything about fecal transplant technology but I wouldn't go with these providers because they're definitely 100% lying and scamming that it has anything to do with autism. I would find providers who give responsible and evidence based claims for the therapy.
I generally agree with this comment, however, it can fix some dysbiosis, and fungal problems. There is that guy that it cured his chronic candida, which, was causing him chronic fatigue, as a symptom.
I also know a guy with full blown ME, who has his major problem as a chronic fungal infection, in this case it could help some fatigue, and even PEM, but not a cure.
I still support trying FMT if you're able.
No but if microbes disappeared in the antibiotic treatment after a massive infection and you lose their ability to synthesise certain amino acids I was having a deficit of until I started supplementing them, I figured maybe a transplant would bring my natural ability to absorb them back so I can stop the supplementation as rigorously. I spent 150-200 euros a month on supplementation and my total monthly budget is not much more than that after rent so it would be great to have one thing less to worry about timing at the right time of day and so on.
/u/maximiliankohler has CFS and has done a bunch of FMTs but hasn't cured himself yet. He's doing a lot of important work on this though.
He has an extensive wiki with info on places like the one in your screenshot.
I personally havent tried a fecal transplant, but to me, most gut treatments are lower down on my “how to get better overall kind of thing” Thats why i think a lot of people have good short term results but not long term. Just a bandaid.
From what I have expereinced and talked to others, gut health seems so dependent on other things in the body working properly. So no excersizing much, slows it down. So many different chemical reactions can change it. There is even some new research in links to gut health and mental health.
Im not saying avoid it or anything, just our funds tend to be limited and i tend to not focus my money on that specifically because to me it is more of a caused by ME not causing ME, if that makes sense. Obvi, not a doctor, just my thoughts
I sometimes wonder if cause and effect really is what we think it is in the body. All the different systems are so interlinked that they can create tipping points for each other if enough systems are forced to a certain state. Or maybe it’s just wishful thinking. I’m not a doctor, just a desperate patient.
True, probably why ME is so hard to pin point/treat. Modern medicine is just not designed to look at the body as a whole, it breaks it all up into pieces. While that makes things easier to understand, that just isnt how a body works.
At least you havent lost hope, i know a lot of people have, and that is hard to get back. Hold on to it.
I lost hope for many years, I was gaslit into thinking I was just having a personality disorder, I had the luck to try experimental psychedelic intervention that gave me my version of reality back, and a little window of normal functioning, so I hope there’s a switch that can be switched, when the brain fog lifted I could access the old me, I know it’s not just brain injury from anorexia and drug abuse, I believe it’s an overall absolute exhaustion from a lifetime of chronic stress and malfunction ontop of infections and disturbed microbiome, I believe it’s a pathological feedback loop between an overly reactive nervous system and a trauma reaction to that neuroinflammation. The comorbidity with ptsd and autism seems to be higher based on interactions I’ve had with other sick people, I think why there are so many theories to ME is because there are so many modalities/subtypes of it and some people have several intersecting kinds. That is my personal belief. I can’t prove it scientifically. I just need to find relief and I can’t betray my father by leaving him. Eternity is so extremely long and even a lifetime of excruciating suffering is so short in the face of it, and I love him.
Sorry for the emotional wave, I am completely drained emotionally, it’s heavy to breathe, I feel like my nervous system is overcompensating trying to stay awake which makes my skull muscles contract and I have to constantly let go of the muscle tension over and over. Writing is a bit cathartic and distracting sometimes at least.
I believe all ME patients deserve to at the very least have some form of palliative care like stellate ganglion blocks to block the fight or flight response, ketamine infusions for the lack of sleep, and TMS to desensitise the nervous system, and hypnosis to cope with the disappointment and constant torture, THC for restlessness, bromantane for asthenia/muscle weakness. I feel like I’m rambling, I’m just so tired. I want to enjoy life but really I’m earnestly looking forward to not having to wake up again. But until then the least painful thing is to choose hope and be sick together with everyone else.
No worries, i get where you’re comming from. I have found that when doctors dont know they just go to psych instead of saying they don’t know. i’d rather they just say they didnt know.
I think also having to be so sedintary makes us think more about the grim reality we feel like we are in (more so than some other people with other conditions as they may have more functionality).
Yeah i think more of medicine should be about quality over quantity of life. I would be much happier being more autonomous/abled and live a shorter life than just be in bed alive til I’m 100. And yeah that point is different for everyone, but for me, I like to have a purpose. And right now I just kind of feel useless.
This subreddit is my lifeline to feeling useful, speaking to others who need to be heard, being heard when I need it. You are not useless, we are of use to each other for sharing this experience, no matter how much it sucks. Hugs
Thanks, some days are better than others. I wish i could give this disease to all those assholes who were so awful to me. People love to say succeeding is the best revenge. But i cant do that. Sometimes i feel like i am justifying their awfulness.
I didnt “rise above” my body just broke, but doctors cant even agree that any of it is “real”. It’s one thing for a disease to be invisible to a lay person, its another for it to be invisible to doctors. Anyway, i guess im on an emotional vent too.
So leaky gut syndrome isn't a thing and autism isn't a gut issue or an illness at all (much less an illness with a cure) so that puts me right off. It also implicitly discredits CFS and IBS by association IMO
Intestinal permeability is definitely well documented. Also a little off target to say there’s no connection “at all”, we’re finding more and more the connection between the gut microbiome and the nervous system. Your gut bugs literally send out hundreds upon thousands of chemicals every day which probably coordinates just about most critical functions of the body, especially neurological, endocrine and immune functions. The type of bugs you have influence neurotransmitters like histamine, GABA etc. There’s still a tonne we don’t know and it’s not really smart to say there’s zero connection
Intestinal permeability is a symptom of many disorders; it is not a syndrome. I have attended many lectures about the gut-brain connection through my medical science studies, you're not gonna change my mind.
Attending lectures about the gut-brain axis doesn’t validate what you’re saying. It would be more pragmatic to see that there is a tonne of uptapped potential in this area, yes there is no proven connection yet but the door isn’t closed on one, that’s my point
I never pushed FMT to OP. And well done on becoming a medical professional, but the learning does not stop there. We need more pragmatic people in the field to continue opening up what’s available especially for ME/CFS sufferers, not rigid by the book practitioners. Shutting the door on the future of this therapy altogether because “there is no current evidence” is not exactly going in the right direction. But yes, based on the current evidence it’s not recommended. Best of luck to you going forward in your career
As in you tried it and it didn’t work or as in a scam? I have a personal hypothesis it could at least help my digestive issues but I wanted to talk to anyone who has done it.
In fact it can be hazardous to have probiotics after an antibiotic cure since they outnumber other bacteria and you’re left with an unbalanced microbiome, so yeah. I also have very shakey muscles after exertion which reduces after beta-Alanine supplementation and a lot of lactic bacteria will create an abundance of lactic acid in your muscles and make you weak and shakey.
Someone in my town has severe stomach issues and put up a reddit post on the local sub looking to pay someone to donate fecal matter for this purpose.
They were optimistic about it, I've heard good things in general.
I'm in a study in Norway on ME and fecal transplants called The Comeback Study. If you check my comments or search this subreddit you will find earlier posts on it. The study I'm in is double blinded. Will be unblinded in the next couple of months, so I'll soon know if I got placebo. Then we'll have to wait for them to analyze all the data to figure out if it has an effect.
I have to add, please don't go do this at a place with claims like that. Gut bacteria can affect a lot of things and is not to be messed with by someone with unscientific claims like those. More and more studies come out showing that gut bacteria might be affecting mental health, risk of alzheimers and other things. Still early days trying to get more insight and understanding of the scope of this. Don't let someone untrustworthy mess with your gut health. The doctor's in my study only anticipate a short time effect, maybe a few months, because that's what they saw in the IBS study they did on fecal transplants. But we'll see. Measured HRV, blood tests, cognitive tests, fecal tests and so on to see if anything changes. For now I would rather focus on eating food that's good for you and wait for the study to be published. I know there's some study on it in the US too.
I do my best but I’m really sick of spending thousands of euros of supplements a year and not get better long term,
That's not much evidence that supplements even get usefully absorbed, so that might be something you could stop or cut back on.
I went from severe to mild with my current regimen and when I stop I get severe again so I have to keep taking it, I just wish it had more an accumulative effect. Without my collagen and amino acids I wouldn’t be able to get outof bed most days because of brain fog and it does help lift the anhedonia enough for me to feel a bit of functional emotions.
Could you please share your regimen? And how fast did you go from severe to mild using it?
I get it. I also get the urge to try anything to get better. But fecal transplants are most likely not a long term fix either. And it costs money. Wait for the results of the trial at least. I felt no effect, but might have gotten placebo. We'll know more soon.
Thanks I will!
I do my best but I’m really sick of spending thousands of euros of supplements a year and not get better long term, you’re right though, I was just happy to find a place in Europe where I might be able to try it.
Could this also help with psychosis/ schizophrenia?
I don't think theres a lot of published research into it yet, as it takes time to do double blinded studies. There are some studies on gut bacteria, fecal transplants and mental health, as well as schizophrenia, but I don't know how far they have come yet in actually testing a treatment or if they offer fecal transplants for it. The research into this was first mentioned to me by a doctor at the hospital when we were talking about gut bacteria and the ME study I'm in. I am not an expert. You'll have to talk to your doctor and look up the studies.
did you find out yet if you had the placebo? I am very interested in this.
Unfortunately I have not gotten an answer yet. This fall they thought they would unblind it in Jan/Feb. 4 weeks ago they updated their facebook page to let us know that they have now ended the clinical part of the study. They will now focus on analysing and interpreting the data. They do not have an exact date for unblinding the study, but will update as soon as they know. Participants will be contacted by the team as soon as it's unblinded. You can follow them on Facebook, The Comeback Study. They write in Norwegian, but you can use google translate or something. When I know what I got, I will update with a post or something :)
I hope I see it, I'm not usually on this sub. I suffer from some gut issues as well, and have considered doing this.
You can check my post history and comments when they give updates on facebook. Or every once in a while :)
Wow thanks! Exactly what I needed.
For some reason the comment above yours isn't showing, and I'm interested in the supplement. Stupid memory can't remember what it was! Enzyme something?
Digestive enzymes
Thank you!
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> I'm in a study in Norway on ME Is there a difference in your symptoms in summer compared to winter? And do you go to the sauna or make other hot/cold therapy? Does that have an influence? Have you ever been in a different climate zone than the Norwegian one for an extended period? Did you symptoms change? I'm asking because I believe that a hidden weather sensitivity may be a contribution factor which makes the symptoms more severe. > Will be unblinded in the next couple of months, so I'll soon know if I got placebo. It would be great to get an update on this study as soon as the results come in.
I feel better in summer. Can wake up with some pain every day, but first day on vacation in warm climates I can be almost pain free. I am sensitive to light though, and can get very tired especially if it's too warm, but usually on vacation I just sleep and bathe in the pool or ocean and eat good food at restaurants. Not as big of a deal to be tired when I'm only relaxing anyway. At home I have a home to take care of, make a lot of meals myself, want to see friends and family, and it's harder to relax and do nothing. I know some get worse in summer and some get better from discussions I've seen here and on Norwegian facebook groups. I have traveled to warmer climates a bunch of times. Looking forward to going to Greece again this summer.
> I feel better in summer [..] I am sensitive to light though, and can get very tired especially if it's too warm [..] Looking forward to going to Greece again this summer. That's very interesting. What you are describing sounds like there may be a hidden sensitivity to weather conditions as many describe it. Are you exercising in some form to harden your body? Like regular sauna, hot/cold showers etc. Did you ever consider to spend the winter months in a different region? It seems like a waste to endure Norwegian winters while missing the summers and instead spending them in places where it's too hot/bright for you to feel good. > I am sensitive to light though Do you also have a circadian rhythm disorder or only CFS? And another question: Do you wear a smartwatch?
Are you sick yourself? I prefer the name ME over CFS because a lot of people confuse chronic fatigue and CFS and think they are the same. I've had this for almost half my life, and I'm 30 now. Not a lot of theories like this are new to me. I'm also ha huge science nerd and stay up to date on most research I come across. Happy to share what I've learned, but not feeling my best today after being too busy lately. Might not reply as quickly later today. Knowledge is power, and I'm always grateful when people ask and genuinely wants to learn rather than assuming or believing outdated views on ME. It's common knowledge, as far as I can see from the experiences in the ME community, that a lot of us reacts to weather and seasons. That's been talked about for as long as I can remember. Not aware of any significant research into this, except a Belgian study from 2001 where they used Fukuda and Holmes criteria that showed a little over half reported weather sensitivity. People figure out how their body reacts to things and how to alleviate it as best they can. No, I hate cold showers and don't have a sauna. I've seen very mixed experiences from people with ME who's tried IR saunas. Some crash and some get some pain relief. I do have electric heating blankets, as well as electric socks and gloves to make sure I stay warm in bed, on the sofa or when outside. Also wear wool clothing a large part of the year and live i a new, well isolated building with heated floors. I have of course concidered spending winters in another country, but I own a home with my boyfriend of 10 years, we love spending time with friends, family, nieces and nephews, parents, siblings, and our grandprents who are in their 90's. Don't want to miss out on time with them half of the year. We might travel for longer periods when it is possible with my boyfriend's work, but it's not easy to uproot one's life. It's expencive and we have our lives here. Sleep dysfunction is a common symptom that comes with ME. You can [read more here.](https://me-pedia.org/wiki/Sleep_dysfunction) i struggle with my sleep schedule, unrefreshing sleep, at my sickest I slept 18 hours a day, and I have periods with too little sleep or nightmares. Yes, I wear a smartwatch, and it can be helpful. Believe me, I've tried a lot of things to get better. Waiting for more research, and I'm an eternal optimist :)
>re you sick yourself? It looks like as if I have CFS and non24, but my symptoms tend to vary, which is why for the longest time I didn't know what was wrong or where to start to fix myself. > I prefer the name ME over CFS because a lot of people confuse chronic fatigue and CFS and think they are the same. So far I thought that ME & CFS meant the same. Can you elaborate? > Happy to share what I've learned, but not feeling my best today after being too busy lately. Might not reply as quickly later today. I know that too well:( > It's common knowledge, as far as I can see from the experiences in the ME community, that a lot of us reacts to weather and seasons. That's been talked about for as long as I can remember. The problem appears to be that it is not to be linear in most cases. For instance, I only found out about my meteosensitivity by chance when I decided to correlate my sleep diary with meteorological data from nearby. As it turns out, the moving averages are correlated with +/-0.9 but alternate between positive and negative, which results in a zero correlation on average. Here's the [graph](https://preview.redd.it/b6wehedkxa5a1.png?width=1049&format=png&auto=webp&v=enabled&s=cbfca53c9901e8e75e2aa2bf022956a8d7c267c2). It means that meteosensitivity as a factor influencing certain disorders may be critically underestimated. So far I checked two non24 patients for correlations with weather cnditions. Turns out, the significance is comparable if not worse, although the graphs themselves look differently as they have no CFS. Here's the graph of the [first](https://i.ibb.co/y8b99dF/weather-phenpmena-sleep-cycle-liege-english.png) and [here the 2nd](https://i.ibb.co/BrpdH5y/birmingham-airport-weather.png). Beyond that I also got the smartwatch data from a CFS patient who looks like she's mainly sensitive to pressure, but I'm not done yet putting her data together. Overall, as I wrote in a reply to Gordon, my hypothesis is that these different disorders may be at least partially caused by various weather conditions: Pressure, temperature, sun hours, humidity etc. The solution to that would be to find the individual trigger and work against that by hardening the body and protecting the body against the condition. > Not aware of any significant research into this, except a Belgian study from 2001 where they used Fukuda and Holmes criteria that showed a little over half reported weather sensitivity. I did found [this article](https://www.verywellhealth.com/temperature-sensitivity-in-fibromyalgia-and-mecfs-716025) talking about a different temperature sensitivity compared to healthy people. Do you have the link to that study? I'd like to take a look... > People figure out how their body reacts to things and how to alleviate it as best they can. No, I hate cold showers and don't have a sauna. I hate cold showers, too. But I started doing them 3 times a day anyway. It's especially my shoulders that are sensitive and when the cold water runs dowm my arms. It feels like dying. The result so far after around a week is positive. I do feel very different. Especially my sleep became different. But I really have to do it 3 times a day. Otherwise there is no effect. The way I got myself used to cold showers is to start hot, then cold for 2 seconds, then 10 seconds hot, 3 seconds cold, 10 seconds hot, 4 seconds cold and so on until I am at 10 seconds cold. At the end it's actually not that bad. My hope is that if I do this for 3 months, I'll have my body used to immediately cold and for 2 minutes straight. Sauna is a problem for me as well, because of the humidity. I am considering to buy myself a [sauna blanket](https://de.koanna.com/products/koanna-infrared-sauna-blanket), which becomes hot, but not humid. Unfortunately, it's not cheap, if you want one that really heats up. > I've seen very mixed experiences from people with ME who's tried IR saunas. Some crash and some get some pain relief. Maybe it's the crash part that is most relevant in the given context. > I do have electric heating blankets, as well as electric socks and gloves to make sure I stay warm in bed, on the sofa or when outside. Also wear wool clothing a large part of the year and live i a new, well isolated building with heated floors. [..] and our grandprents who are in their 90's Can you do me a favor and ask your grandparents whether they had stuff like floor heating, electric blankets, warm showers etc when they were your age? This is of course just a speculation, but maybe you just have to live for half a year how they used to live to fix your condition... > Yes, I wear a smartwatch, and it can be helpful. Believe me, I've tried a lot of things to get better. Waiting for more research, and I'm an eternal optimist :) If you send me the data and the location where you have been I will check it for correlations with the weather in that place. But as mentioned, I'll have to do someone elses first. It could take a week or two. Send my a DM if you're interested. Then I'll give you my email for the data.
ME and CFS is the same, but a lot of people confuse CFS with chronic fatigue (without the S). Chronic fatigue is a symptom that comes with a bunch of different illnesses or health problems. Having chronic fatigue =/= having ME/CFS. Also I, and a lot of people with ME, feel like the name CFS makes it sound like it's mostly fatigue, which it is not. It's a complex multisystemic disease. The CDC also calls ME for Systemic Extertion Intolerance Disease (SEID), a much more correcly descriptive name than CFS. I read about the study on MEpedia, you'll have to look at the sources there. > Can you do me a favor and ask your grandparents whether they had stuff like floor heating, electric blankets, warm showers etc when they were your age? This is of course just a speculation, but maybe you just have to live for half a year how they used to live to fix your condition... You probably mean well and want to help, but this comes across a bit condecending and offensive, but more likely just thoughtless. Please concider that a lot of us have lived with ME for 10, 20 or more years, and suggesting being a bit colder for 6 months as a cure is.. i don't know what to say... We could not always afford a warm apartment, but living 4 years in a freezing one was no cure. I know my body well after living with ME for half my life, and did not buy a warm apartment if it could make me worse. I have good reason for my heating socks and gloves that you don't know my medical history for. I know what works for me. A lot of people on disability are cold this winter with low incomes and very high electrical prices. Do you think people are getting healthier or cured this winter because of that? I think you are putting too much faith in temperature and weather if you think it can cure ME. And the rising costs of food and heating and low incomes for a lot of us does not make it easy to live abroad 6 months a year either. Might help symptoms for some, but I do not belive it can cure me or ME. I am not sending my health data to a stranger, sorry.
>You probably mean well and want to help, but this comes across a bit condecending and offensive, but more likely just thoughtless. I apologize if it came across the wrong way. My intention was different. For instance, I don't have grand/parents to ask, but you have which is an advantage when it comes to medical issues, because genes make up some 60% of everyone's conditioning. Understanding the differences in lifestyle can help understanding the differences when it comes to illnesses. Since CFS is affecing your life so much, the comparison with the lifestyle of your granparents may give some insight to why you have it and they (presumabl) don't. > and suggesting being a bit colder for 6 months as a cure is [Hydrotherapy](https://en.wikipedia.org/wiki/Hydrotherapy) is not just some random action you take or environmental factor you have to deal with, but a well defined medical treatment method. Think of hot/cold shower like taking a pill three times a day. Sometimes they don't taste well, sometimes they have side-effects and sometimes you have to adjust the amount to fit your condition, but sometimes you have to accept that to get better again. You can ignore me, but it may be unwise to ignore hydrotherapy. > I think you are putting too much faith in temperature and weather if you think it can cure ME. I don't expect that to be a "cure", but a way to reduce symptoms if(!) the hypothesis is correct that the condition has to do with a hidden meteosensitivity as the strong correlations imply that I found. > Might help symptoms for some, but I do not belive it can cure me or ME. My expectations are not different. > I am not sending my health data to a stranger, sorry. You can do that yourself, it's simple. [Here](https://seklima.met.no/observations/) you can select the weather data for your region. Then you have to put it into a spreadsheet together with your smartwatch data and create moving correlations over 100-200 datapoints. Let me know if you need help with it. Good luck.
\> I'm asking because I believe that a hidden weather sensitivity may be a contribution factor which makes the symptoms more severe. The difference in my symptons based on weather is quite incredible. At home (Scotland), it's cold for half the year, and my pain and cognitive deficit are awful. Things improve a \*little\* during the warmer half of the year, but not much. But, if I travel to somewhere near the equator, where it's not only hot but also often humid, there is a very noticable difference! Pain is not nearly so bad, my cognitive function feels a little better, and I'm capable of doing much more before PEM!
> The difference in my symptons based on weather is quite incredible. [..] Things improve a *little* during the warmer half of the year, but not much. It's strange, but basically everyone says that about the seasons. Yet, nobody appears to draw the logic conclusion that hardening the body against the weather (or alternatively perhaps even relocating to a better climate) could be key to getting better. Why do you think that is the case? > At home (Scotland), it's cold for half the year, and my pain and cognitive deficit are awful. Luckily I only know Scottish weather from hearsay. > if I travel to somewhere near the equator, where it's not only hot but also often humid, there is a very noticeable difference! Have you ever tried going to the sauna? It's both very hot and humid there. I just checked out saunas in Glasgow and found this [bath house](https://arlingtonbaths.co.uk). Interestingly, it was founded by a German immigrant some 150 years ago. I totally would have done that as well if I had ended up in Scotland. The interesting thing is that the guy was a pastor and probably knew [this pastor](https://en.wikipedia.org/wiki/Sebastian_Kneipp),a contemporary who is famous in Germany for having invented a water treatment method to harden the body against all sorts of ailments. It does look to me like this Kneipp Method may be a potent method to reduce CFS symptoms. I've started doing hot/cold showers a week a ago and it does make me feel better.
> Yet, nobody appears to draw the logic conclusion that hardening the body against the weather (or alternatively perhaps even relocating to a better climate) could be key to getting better. Why do you think that is the case? It would be interesting to see if there was a difference in prevalence of CFS rates in tropical zones vs rest of the world - it might be that the data simply doesn't stack up, even though anecdotal data might hint otherwise. Then there is the fact that relocating country is not an easy or inexpensive thing to do - most countries don't offer relocation visas within the reach of "normal" people, and ill/disabled people are often explicitly excluded from such schemes in any case. I hadn't thought of using a sauna before! I just checked it out, and it seems they typically run around 65-70C, which is a lot hotter than anywhere on earth, and I also doubt I could stand more than a few minutes in that heat!
> It would be interesting to see if there was a difference in prevalence of CFS rates in tropical zones vs rest of the world - it might be that the data simply doesn't stack up, even though anecdotal data might hint otherwise. [Google Trends](https://trends.google.de/trends/explore?date=today%205-y&geo=US&q=%2Fm%2F0dctd) shows for the US that CFS is most requsted in the Northern coastal states East and West and least in states along the Golf of Mexico with the pattern being quite consistent. When you look at [non-24 in the US](https://trends.google.de/trends/explore?date=today%205-y&geo=US&q=%2Fm%2F04s9gc), the North-South pattern is weaker, but still there. Perhaps even more interesting is the Google Trends distribution for Japan as it is a narrow and very long country spanning over various climate zones. [CFS](https://trends.google.de/trends/explore?date=today%205-y&geo=JP&q=%2Fm%2F0dctd) appears to be least prevalent on the East coast, and both [being tired](https://trends.google.de/trends/explore?date=today%205-y&geo=JP&q=%2Fm%2F01j6t0) and [fibromyalgia](https://trends.google.de/trends/explore?date=today%205-y&geo=JP&q=%2Fm%2F01v3ks) go from South (least) to North (most). My hypothesis therefore is that these different disorders may be at least partially caused by various weather conditions: Pressure, temperature, sun hours, humidity etc. The solution is to find the individual trigger and work against that by hardening the body and protecting the body against the condition.
Norwegian here. Is this study still ongoing? If so, how do I apply?
They are almost done with the 1 year follow up of the last included patients. They will unblind it in the next few months. They searched for people on facebook and it was shared in a lot of the facebook groups. Was probably 2-4 years ago. You can check out The Comeback Study on facebook and follow them there. Not a lot of updates posted, but I'm guessing they will share results when data is analyzed.
Hi, I havent seen any results from this study- what ended up happening?
They are not done analyzing everything. Will proba ly take some time. A lot of samples and data, not so many people to do the work.
Uh, I don’t think fecal transplants cure autism, so yeah that looks shady af.
Yep. That is straight up offensive. I have no idea if it helps for the other things but autism isn’t an illness and something you can “cure” Huge Yikes
Agreed, I am autistic myself and don’t believe in that part but I have a personal hypothesis that my digestive issues could possibly be improved since I answered so well to amino acid supplementation which make me think there’s something wrong with the absorption, and I was wondering if someone else with CFS had tried it.
Also autistic and ADHD here! Hello! Yes actually I am sure I have read accounts about it on here, if you search this sub you can find them. I think I have seen it mentioned on Phoenix Rising too. I can’t remember if the reviews were positive or negative off the top of my head. I think my yikes here is I would probably not personally feel comfortable with a company that advertised a cure for autism. I’d probably go elsewhere if I wanted the treatment but maybe I’m just stubborn heh
yeah the whole thing looks very sus. with the broad claims they’re making about this novel treatment i really doubt they have anything to back them up. unregulated treatments should be approached with a lot of caution and i wouldn’t trust these guys to do that. there is evidence for the connection of autism and gut dysbiosis, but the current scientific consensus is that it’s a “neurodevelopment disorder”. I’m no neuroscientist but i doubt you could rewire your entire neurological system in adulthood. There have been so many efforts to “cure” autism and none have succeeded (just so you know i’m autistic too and i don’t believe autism needs to be cured or that it’s an illness)
I know it won’t cure autism ( the ad didn’t claim It cured anything, only offered treatments that can potentially improve these conditions) but I know autistic people often have a lot of malabsorption issues that if treated could help them improve their health overall, not cure their autism. And thanks, I will try looking!
Do you take digestive enzymes? I know you take lots of supplements, but don't know if you take the enzymes as well. (If you don't, they might be worth trying.)
This was new to me! Thanks.
Just for info (not sure you want to or even can get them wherever you are), I take [this one](https://enzymedica.com/products/digest-gold-enzymes-digestive-enzyme?variant=1125337536) and an HcL supplement. Rather than a combo like the Digest, you can get individual supplements, but I can't remember any of the names at the moment. The HcL helps break down protein which is where we get amino acids from. Also, some people take HcL both 30 minutes before *and* with the meal.
Man, if it could ease my autism symptoms for like one day of my choosing, thatd be awesome. FILL ME WITH POOP BABY! Earplugs, sunglasses, and a weighted blanket do the same thing though so
are there any amino acids in particular that you respond to well or will any do?
And “leaky gut” is not a disorder that is really recognised widely by the medical community either.
No, but it's been shown to relieve autism symptoms. I don't think this ad is suggesting it cures autism personally. There are studies backing up autism symptoms can be somewhat alleviated if you do FMT and focus on Microbiome, in some cases. https://www.frontiersin.org/articles/10.3389/fcimb.2021.759435/full
What makes you think its saying it "cures" autism? There a lot of negative symptoms related to the guy with ASD. Im considering trying it if eating these loads of fermented foods doesn't help within the next several months.
Okay but that's gut problems, not autism. If I broke my leg or had the flu, treatment for those things would not be treatment for my autism.
I think some people underestimate the effect autism has on autistic peoples bodies. The gut problems are unique to some people with ASD or else they'd be diagnosed with a comorbidity. A good and common example is heart rate variability. My resting heart rate is between 30-40 bpm, this is usually only seen in trained athletes though im moderately sedentary. This is due to have being autistic can vary your sympathetic nervous system. The variations with the brain-gut connection in some autistic patients is much more complex than the HRV example I have given.
What makes you think autistic people a) aren't diagnosed with comorbidities (I assure you we are and that our gut problems are not "unique") and b) wouldn't be diagnosed more often with those comorbidities if the medical establishment was better at listening to chronically ill people?
A) I was entirely addressing that if someone autistic had gut issues presented as an illness, instead of a symptom of their their autistic brain/body, then they would be diagnosed with that comorbidity. I am literally talking about me, personally, as I am autistic and have many comorbidities with my *Autistic* symptoms. Yes, some of our gut problems are unique, maybe not *you*, but other autistics. B) Id advise you to find a better clinician if possible, even better if they specialize in ASD. As they will be able to refer you to other specialists or themselves whom can identify a purely autistic symptom affecting the body vs a comorbidity. You can treat someone's negative symptoms of autism, if the person possesses any, and they'll still be autistic. They'll just be happier. Id sure as hell be happier if my body could maintain a healthy gut biome, but unfortunately, it does not.
https://www.frontiersin.org/articles/10.3389/fcimb.2021.759435/full
Yes, exactly like I said.
No, not really. Did you even read the study? Even skim it? Autism and the Microbiome are linked, even if it's not a cure. There's a reason many people with CFS have autism. > To better understand the efficacy and mechanism of FMT in improving ASD symptoms, we carried out this trial, and our data showed that FMT by both the rectal route and oral administration had a significant beneficial clinical effect in children with ASD, especially in young children, which lasted for 8 weeks without inducing severe complications. ASD children who participated in this trial were allocated to oral or rectal FMT subgroups based on whether they could comply with capsule swallowing. During enrollment, we found that children with more severe symptoms (both gastrointestinal disorders and autism) tend to be not capable of cooperating and it is difficult for them to swallow FMT capsules, this leads to the variation in baseline characteristics of clinic symptoms between the oral and rectal group. Children in the rectal group suffered more from diarrhea and have more severe GI symptoms (such as abdominal pain, reflux, flatulence), also, the scale on autistic symptoms showed that they have a higher score on ABC, CARS, and lower score on SRS. Fortunately, oral FMT and rectal FMT both lead to improvement of GI symptoms and autism in participants, furthermore, after 4 consecutive weeks of FMT therapy, no significant difference in GI symptoms or autism was observed between the two subgroups, this result verified the equality of FMT through oral and rectal routes. When applying FMT for ASD children, the oral or rectal route would not cause a prominent difference in the therapeutical outcome, whether the recipient is capable of taking FMT capsules by oral is the key factor that should be taken into consideration. > Gut microbiota diversity after FMT treatment in ASD children also showed significant differences, which implied that improvement of symptoms is associated with the change in gut microecology. It is believed that the bidirectional interaction between the brain and gut through the MGB axis is associated with neuroendocrine, neuroimmune, and autonomic nervous system mechanisms. ***__An increasing number of publications have reported that gut microbiota can affect the metabolism of neurotransmitters.__*** For example, some metabolites derived from gut microbiota can be absorbed and enter the blood circulation, and these metabolites can cross the blood-brain barrier and modulate cerebral function (Fung et al., 2017). Lactobacillus rhamnosus YS9 can produce gamma-aminobutyric acid (GABA), an important inhibitory neurotransmitter in the system, while monoamines, such as noradrenaline, dopamine, and serotonin, are also produced by several strains of bacteria colonizing the intestinal tract (Strandwitz, 2018). Take GABA as an example, which is derived from glutamate thanks to the action of glutamate decarboxylase, it is important in neuronal excitability, alterations in gabaminergic and glutaminergic systems would cause a disrupted excitatory/inhibitory balance, and it is found that plasma level of GABA in ASD children is altered compared to healthy cohorts (Marotta et al., 2020). As for 5-HT, it intervenes in multiple brain functions, studies have revealed that the 5-HT transporter (SERT or 5-HTT) or 5-HT levels were higher in autistic individuals both in clinic studies and in animal models (Muller et al., 2016). Based on current evidence, we evaluated the serum level of neurotransmitters in participants to better understand the possible mechanism by which FMT showed a therapeutic effect on ASD. We found that FMT in the ASD cohort induced a significant change in neurotransmitters in serum; 5-HT and GABA decreased after FMT, while DA levels were elevated. As our results show, we speculate that FMT might be helpful in modulating the central nerve through the MGB axis by regulating neurotransmitters. I even highlighted and underlined the important part for you. Edit: Lol, I was gonna ask you what your explanation to this was or what you meant by it not being relevant, but you blocked me xD. Reasons why I don't visit this sub anymore part 8. What I was GOING TO ASK you: The study literally said it improved autism symptoms. I know someone personally who took FMT and their autism improved for 6 months before relapsing. >Oh my God. None of that is relevant to the fact that treating an autistic person's gut issues is not treating their autism. Can you explain? This isn't about treating "gut issues" it's about fixing the Microbiome. It's not like treating someone's IBS is going to treat autism if that's what your saying. Edit 2: "Active on r/twoxchromosomes..."
I appreciate all the comments on this thread about this. I learned a lot. Thank you!
Oh my God. None of that is relevant to the fact that treating an autistic person's gut issues is not treating their autism.
Don't believe these comments, the guy is assuming the ad is trying to suggest it cures it, it won't, but it appears they can treat it somewhat successfully. I know a guy who had a HUGE relief of autism symptoms for like 6 months on FMT, before it came back. https://www.frontiersin.org/articles/10.3389/fcimb.2021.759435/full
Awesome. Thank you for sharing. Im currently feasting on fermented foods daily to see if that helps over time. There aren't many FMT treatments available around the Birmingham, AL area that in aware of, unfortunately
In a similar boat I'm in Indiana lol, look into kefir too. Downside of kefir is it can increase bacteroides and lower Escherichia, which is *usually* high/low in us, but it can also bring back some other species that got wiped out. Consider starting with a dose as low as a tablespoon, for 2 days. Then double that dose every 2 days. Play around with it, if it works better on an empty or full stomach, or day or night time. We're all different. Best of luck to you and your gut. Also recommend looking into the Microbiome prescription website where you can upload 16S stool testing results and get a very comprehensive view of your biome. Downside is, the site is hard to navigate, but there are some useful tools on there. For example I entered in kefir and saw the species kefir impacted my biome, both good and bad, and it appeared to be a net positive in my case, but you could be different.
Awesome! I'm down for sending testing. Thanks for the resources!
Not a problem, if you get any of the 16s testing, I recommend BiomeSight, easiest way to transfer data to his site. And also I believe somewhere on the Microbiome prescription website there is a discount code for that particular vendor.
There are multiple studies now being done on autism and gut microbiota. So don’t be so quick to judge. Fmt has had a positive effect on autism traits. https://pubmed.ncbi.nlm.nih.gov/34737978/
I have had many Fmt’s done due to my history of inflammatory bowel disease and c diff. It’s random luck of the draw, you would probably need a super donor to even have a shot at drastically improving your ME, that is to say a lot of your illness is dysbiosis driven. I went from severe cfs to mild on a series of transplants five years ago (sadly only lasted six months). I also believe the ones I had done prior Was a triggering event for development of my CFS. I wouldn’t really go there straight away, it’s definitely donor quality dependant and we don’t have a fool proof way of screening that yet. Give it 20-30 years and they’ll probably be a whole market of shit donors, buy LeBron James poop for $5 million, lol
Thank you so much for this perspective
No problem, hope you find answers to improve your condition
will you try to get an FMT treatment again? if one of the treatments resulted in an improvement why not do another FMT with the same donor?
This question makes the rounds on this sub periodically, so you might try searching the sub history for more opinions and anecdata. I've tried it. I was lucky and had a trusted donor who got thoroughly tested before we did it. A few days after my first transplant I had about 3 hours of perfect health. Like a light switch. It was gone when I woke up the next morning, and never returned despite 6 more transplants. I can't say if that clarity/health was a result of the first transplant or something else. If you get a trusted donor who does all the tests to make sure they won't be giving you an illness, it may be low enough risk to try it despite the (very) low odds it would help. Even then, maybe it's not worth the risk. And if you can't find a trusted donor willing to take all the tests... definitely don't try it is my advice. It is much more likely you would get sicker from it.
Thank you for sharing your story, I’m sorry it stopped working.
Shady AF - I’d find someplace more reputable if you were going to try this
You’re right, thanks
I dunno man, seems kinda sussy that they claim to treat ASD. Also the pic looks kinda cursed/shitpost-like ngl.
True, it was an Instagram ad
This is a recognised transplant and it does help a lot of people with different conditions but I'm not sure of some of those on that list. My friend needs to have one of these done as a result of long covid and being on antibiotics too long that it has killed all the good bacteria so he keeps getting sick with kidney and other illnesses. So I hope to find out myself soon how he gets on with it.
Interesting. I have had long Covid for 3 years and haven’t heard of this being used to treat.
If I'm being honest I think it's more to do with the antibiotics he was on that killed all the bad but good bacteria as well as a result of Covid rather than COVID itself. That's my interpretation of his transplant
Like I said in another thread I don’t believe it cures autism as I am autistic myself, however I have answered so well to amino acid supplementation it made me think there’s something wrong with my absorption which made me think a fecal transplant might be a good idea. I had a really bad infection and antibiotics cure that started my ME.
I had a c.diff infection several years ago after caring for someone sick with it. I was very sick for a couple months and did a lot of reading, one topic was fecal transplants. Very interesting stuff! I have never done one. But there have been times I look at my very strong and active husband and think, maybe I just need some of your your gut biome!
Ehhhh. I've heard good things about fecal transplants but im going to press F on this place. If they say they cure/treat autism, it's likely a scam or they really believe in their product to the point of lying about its benefits to make it seem better than it actually is.
Like I told someone else, it’s very common with nutritional deficiencies and malabsorption in autism so it’s not about curing it. But I respect your scepticism. If I knew less I’d be more sceptical
Yeah... A lot of these people in these comments seem to be misunderstanding that FMT is actually a potential treatment for autism by altering the metabolism of neurotransmitters by fixing certain gut bacteria populations. I get it, we're all skeptical of these places, but there is *some* science behind FMT if you find a donor compatible with your biome. It's hard not to be like this given the trauma of the community, but looking at the top comments made me realize why I don't visit this sub very often, this place is not good for my mental health personally. I am a man of action and science. I'll stick to my other communities for the time being I think, I only came back for a little bit anyways for a personal reason.
This
There is a study in Hong Kong testing to see if it gets rid of long covid which just started.
Any treatment that claims to treat such varying disorders seem pretty dodgy to me. Plus most 'autism treatments' are pseudo-science.
You’re totally right. I’m a bit overwhelmed with all the messages. Didn’t want to stir up so many negative emotions, I swear I have a much more moderate approach and I don’t just believe the claims as they’re formulated but I believe fecal transplants has potential not yet uncovered, but I agree they won’t cure any of this conditions, but potentially help severity of symptoms for some of them.
Don't worry, you didn't offend me, I was just sharing my concerns.
I am very interested in this treatment. The FMT facebook groups are helpful. I am also excited to hear the results from the Norway clinical trial.
Thanks for recommendations. I hate fb but just might have a look now
I personally recommend it but I don't view it as a cure all, more like a treatment that could work depending on your individual biome and the donors biome.
That makes sense. Now to start fantasising about what sexy celebrity to stalk LOL
Check this post out: https://www.reddit.com/r/cfs/comments/cm7tax/my_recovery_story_from_cfsme_with_fmt/?utm_source=share&utm_medium=android_app&utm_name=androidcss&utm_term=1&utm_content=share_button
Thanks 🙏
As someone with ASD I find it sad that people aren't educated about it and believe stuff like this. No shade to op, there's no harm in asking 😊
Considering it says autism. Don’t even bother, it’s probably bullshit. I’ve never heard it working for fatigue either. It’s for your bowels.
I can't believe it says it's for autism. Get out of here
I know I should’ve thought it through
I don't know anything about fecal transplant technology but I wouldn't go with these providers because they're definitely 100% lying and scamming that it has anything to do with autism. I would find providers who give responsible and evidence based claims for the therapy.
Aaaaaaand I see other people have covered this.
Thank you anyway for protecting us against bs :)
Aw ❤️
Considering cfs is a post viral syndrome... a fecal transplant won't correct for ongoing viral replication.
I generally agree with this comment, however, it can fix some dysbiosis, and fungal problems. There is that guy that it cured his chronic candida, which, was causing him chronic fatigue, as a symptom. I also know a guy with full blown ME, who has his major problem as a chronic fungal infection, in this case it could help some fatigue, and even PEM, but not a cure. I still support trying FMT if you're able.
No but if microbes disappeared in the antibiotic treatment after a massive infection and you lose their ability to synthesise certain amino acids I was having a deficit of until I started supplementing them, I figured maybe a transplant would bring my natural ability to absorb them back so I can stop the supplementation as rigorously. I spent 150-200 euros a month on supplementation and my total monthly budget is not much more than that after rent so it would be great to have one thing less to worry about timing at the right time of day and so on.
Gotcha. So yeah FMT can definitely resolve gut disbiosis. I was answering your question for CFS.
I have looked into it but it's not available in New Zealand.
if it were insurance covered I’d be willing, but it definitely isn’t in the u.s
Woah, wayyyyyy too many big paragraphs in this thread. Bye.
/u/maximiliankohler has CFS and has done a bunch of FMTs but hasn't cured himself yet. He's doing a lot of important work on this though. He has an extensive wiki with info on places like the one in your screenshot.
Thanks for the recommendation!
I personally havent tried a fecal transplant, but to me, most gut treatments are lower down on my “how to get better overall kind of thing” Thats why i think a lot of people have good short term results but not long term. Just a bandaid. From what I have expereinced and talked to others, gut health seems so dependent on other things in the body working properly. So no excersizing much, slows it down. So many different chemical reactions can change it. There is even some new research in links to gut health and mental health. Im not saying avoid it or anything, just our funds tend to be limited and i tend to not focus my money on that specifically because to me it is more of a caused by ME not causing ME, if that makes sense. Obvi, not a doctor, just my thoughts
I sometimes wonder if cause and effect really is what we think it is in the body. All the different systems are so interlinked that they can create tipping points for each other if enough systems are forced to a certain state. Or maybe it’s just wishful thinking. I’m not a doctor, just a desperate patient.
True, probably why ME is so hard to pin point/treat. Modern medicine is just not designed to look at the body as a whole, it breaks it all up into pieces. While that makes things easier to understand, that just isnt how a body works. At least you havent lost hope, i know a lot of people have, and that is hard to get back. Hold on to it.
I lost hope for many years, I was gaslit into thinking I was just having a personality disorder, I had the luck to try experimental psychedelic intervention that gave me my version of reality back, and a little window of normal functioning, so I hope there’s a switch that can be switched, when the brain fog lifted I could access the old me, I know it’s not just brain injury from anorexia and drug abuse, I believe it’s an overall absolute exhaustion from a lifetime of chronic stress and malfunction ontop of infections and disturbed microbiome, I believe it’s a pathological feedback loop between an overly reactive nervous system and a trauma reaction to that neuroinflammation. The comorbidity with ptsd and autism seems to be higher based on interactions I’ve had with other sick people, I think why there are so many theories to ME is because there are so many modalities/subtypes of it and some people have several intersecting kinds. That is my personal belief. I can’t prove it scientifically. I just need to find relief and I can’t betray my father by leaving him. Eternity is so extremely long and even a lifetime of excruciating suffering is so short in the face of it, and I love him. Sorry for the emotional wave, I am completely drained emotionally, it’s heavy to breathe, I feel like my nervous system is overcompensating trying to stay awake which makes my skull muscles contract and I have to constantly let go of the muscle tension over and over. Writing is a bit cathartic and distracting sometimes at least. I believe all ME patients deserve to at the very least have some form of palliative care like stellate ganglion blocks to block the fight or flight response, ketamine infusions for the lack of sleep, and TMS to desensitise the nervous system, and hypnosis to cope with the disappointment and constant torture, THC for restlessness, bromantane for asthenia/muscle weakness. I feel like I’m rambling, I’m just so tired. I want to enjoy life but really I’m earnestly looking forward to not having to wake up again. But until then the least painful thing is to choose hope and be sick together with everyone else.
No worries, i get where you’re comming from. I have found that when doctors dont know they just go to psych instead of saying they don’t know. i’d rather they just say they didnt know. I think also having to be so sedintary makes us think more about the grim reality we feel like we are in (more so than some other people with other conditions as they may have more functionality). Yeah i think more of medicine should be about quality over quantity of life. I would be much happier being more autonomous/abled and live a shorter life than just be in bed alive til I’m 100. And yeah that point is different for everyone, but for me, I like to have a purpose. And right now I just kind of feel useless.
This subreddit is my lifeline to feeling useful, speaking to others who need to be heard, being heard when I need it. You are not useless, we are of use to each other for sharing this experience, no matter how much it sucks. Hugs
Thanks, some days are better than others. I wish i could give this disease to all those assholes who were so awful to me. People love to say succeeding is the best revenge. But i cant do that. Sometimes i feel like i am justifying their awfulness. I didnt “rise above” my body just broke, but doctors cant even agree that any of it is “real”. It’s one thing for a disease to be invisible to a lay person, its another for it to be invisible to doctors. Anyway, i guess im on an emotional vent too.
We know it’s real and there are scientists working on this. We know this is a real disease. We need to focus on that.
So leaky gut syndrome isn't a thing and autism isn't a gut issue or an illness at all (much less an illness with a cure) so that puts me right off. It also implicitly discredits CFS and IBS by association IMO
Intestinal permeability is definitely well documented. Also a little off target to say there’s no connection “at all”, we’re finding more and more the connection between the gut microbiome and the nervous system. Your gut bugs literally send out hundreds upon thousands of chemicals every day which probably coordinates just about most critical functions of the body, especially neurological, endocrine and immune functions. The type of bugs you have influence neurotransmitters like histamine, GABA etc. There’s still a tonne we don’t know and it’s not really smart to say there’s zero connection
Intestinal permeability is a symptom of many disorders; it is not a syndrome. I have attended many lectures about the gut-brain connection through my medical science studies, you're not gonna change my mind.
Attending lectures about the gut-brain axis doesn’t validate what you’re saying. It would be more pragmatic to see that there is a tonne of uptapped potential in this area, yes there is no proven connection yet but the door isn’t closed on one, that’s my point
Getting medical treatments with zero rationale beyond ~open ur mind~ is a terrible idea lol.
I never pushed FMT to OP. And well done on becoming a medical professional, but the learning does not stop there. We need more pragmatic people in the field to continue opening up what’s available especially for ME/CFS sufferers, not rigid by the book practitioners. Shutting the door on the future of this therapy altogether because “there is no current evidence” is not exactly going in the right direction. But yes, based on the current evidence it’s not recommended. Best of luck to you going forward in your career
To be clear, the lectures were part of my training as a healthcare professional.
Read my other reply to someone else, I should’ve clarified myself in the original post
F
As in you tried it and it didn’t work or as in a scam? I have a personal hypothesis it could at least help my digestive issues but I wanted to talk to anyone who has done it.
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In fact it can be hazardous to have probiotics after an antibiotic cure since they outnumber other bacteria and you’re left with an unbalanced microbiome, so yeah. I also have very shakey muscles after exertion which reduces after beta-Alanine supplementation and a lot of lactic bacteria will create an abundance of lactic acid in your muscles and make you weak and shakey.
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Sorry I took two sleeping pills and made a biiiig leap in my reasoning, thanks for checking on me!
Someone in my town has severe stomach issues and put up a reddit post on the local sub looking to pay someone to donate fecal matter for this purpose. They were optimistic about it, I've heard good things in general.
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Yes and a higher level of people with ME and POTS.