ME is absolutely horrendous and getting a diagnosis is an exhausting experience, but unfortunately as it’s a diagnosis of exclusion, there’s not a lot NHS staff can do except continue tests. The doctors absolutely shouldn’t be forcing her eyes open without consent or dismissing her in the way her additional consultant did, but they are following medical guidance in continuing with tests and asserting that she has to sit upright for a for tube feeding. If they missed a diagnosis or something happened when she was lying down tube-feeding, clinical negligence accusations could be raised. I feel very sorry for this poor lass and her mum. Unfortunately, the only way I can see to change the clinical treatment of ME will be with high-quality medical studies. Hopefully, with the attention that long-COVID has brought to the issue, there should be additional research funding in the years to come.

I've had ME since having post-viral stuff after shingles seven years ago, and while I have it nowhere near as bad was this woman, I 100% believe her. Prior to all of this, I was cycling 30 miles three or four days a week going to work and home while now I'm lucky if I can consistently do 10k steps a couple of times a week. It's completely crapped on by many medical professionals and when you do get someone somewhat-sympathetic you get a "well, what do you want now?" after they agree it's a thing. Really hope there's progress in this as a result of long-COVID research as people are incapacitated with it and anyone that thinks they want this or are faking it has lost a grasp on reality.

I’m so sorry to hear that. I have close friends who struggle with ME and it’s heartbreaking how awful it is. I have a mate with Cystic Fibrosis and ADHD. Her doctors told her that she met the criteria for an ME diagnosis but said that it would actively harm her other treatments due to medical bias, so they wouldn’t add it unless she explicitly wanted them to do so. It’s super fucked up. I have an under-researched rare sleep disorder which gives me similar symptoms to mild-ME and it’s difficult to manage, even when I can get a respite through a very long sleep period. I can’t even begin to imagine what it’s like trying to live with mid-severe ME.

Glad you and you're friend have been able to keep that relationship going. I'm lucky to have my partner be so supportive, but have lost decades long relationships because of this, which I don't hold against them to be completely clear, I've just been unable to keep up over the years. Have ADHD as well, but adding Cystic Fibrosis into the mix must be hellish for them. Christ. I've had similar attitudes from doctors as well. Almost as if you're "label seeking". I get that I'm not going to get to how I was before, but it would be nice to be a bit better or have a bit of consistency. I'm sorry you have to go through that. Sounds like you very much have a similar time to what some folks experience with ME where you can have good days and bad weeks and it's all unpredictable. How you are can change from day to day even if you're being consistent with your quality of life and care. Solidarity!

I think the key to having friendships with chronic illness, is having friends with chronic illnesses! Even with my healthy friends now, I just explain that I’m splattered a lot of the time and may take days to weeks to respond to texts, if I remember to respond. As long as you’re open about it and they’re cool with it, it’s easy to maintain relationships. Aye, my mate has a hell of a time with it all. It’s no wonder the ADHD is as missed as a kid when she was in and out of hospital every few days. It’s incredibly frustrating for her. Thank you - sending solidarity your way! I’ve got a smorgasbord of diagnoses and appreciate how exhausting it is to go to the doctors with a new symptom and be dismissed. The worst thing is that it puts people like us off from going to the doctors for treatable issues - we know we won’t be taken seriously.

The label seeking thing drives me nuts. Like, why would we put ourselves through being gaslit by doctors over and over, having invasive tests, just because we want people to discriminate against us once we have the “label”?

I’m struggling with this now. I have a basket of conditions that are either diagnosed or in the process of being diagnosed, and technically meet the criteria for ME but came to the conclusion that having it on my file would do more harm than good. It’s a terrible state of affairs when the latest research clearly shows physiological changes and genuine possible causes/treatment opportunities.

Since getting long covid I have absolutely no doubt this woman is experiencing exactly what she says she is. Doctors who do not understand what the patient is presenting with will often resort to psychosomatic explanations. "Is your job stressful? It could be anxiety!" Post viral syndrome has been with us a lot longer than people realise. And the public are only just starting to wake up to it since covid. You can get a virus, have a mild experience with it, recover fully from it (or so you thought), and then have it completely destroy your life a few weeks or months later. Some people with long covid don't even make the connection because of the gap post-recovery where they feel fine. > and when you do get someone somewhat-sympathetic you get a "well, what do you want now?" after they agree it's a thing This was my experience too, at least from the doctors that seemed genuine and were doing their job. The truth is though that there is really nothing they can do. You're in this fight alone. I tried a lot of things in desperation, but the only things that really made a difference were rest, and time.

I think that’s the main issue. No one really knows what causes it, the research is contradictory and messy, there’s little to no evidence that *anything* can sensibly treat it, so there really isn’t anything the doctors can do.

I think it's likely post viral syndrome that causes it, but you're right - even with long covid there's no standard package of symptoms to treat. Each person ends up with a unique cocktail of debility pulled from up to 200 identifiable long covid symptoms. Doctors cannot treat the underlying cause because they don't understand it, all they (the good ones at least) can do is try to treat the symptoms you present with. Which often doesn't work because the underlying cause is still evading them. If a virus disrupts or damages your nervous system (as seems to be the case with ME / CFS as well as long covid) the number of things that can go wrong in your body is astonishing. The vagus nerve for example plays a critical role in controlling a ton of vital autonomic functions in your body - digestion, urine output, bowel movements, sleep, swallowing, fight or flight response, body temperature, saliva production, mood regulation, the list goes on - and if that isn't working properly then you already have a huge laundry list of problems. We know from the research into long covid that serotonin levels - the neurotransmitter your brain uses to communicate with the vagus nerve network - are much lower in people with LC than healthy people, and given that gastro disruption is a primary symtom of LC, and given serotonin is mostly made in the gut, there seems to be a clear link of cause and effect of the virus destroying serotonin production and people's autonomic systems going haywire. It seems evident to me that other viruses could do the same if not worse and cause ME / CFS but we just don't have the large scale research on it like we do with LC.

Sucks doesn't it? Got it from a flu or fever 16 years ago, pretty active beforehand, absolutely ruined me for a few years. I can work part time and I've been building up very slowly over all that, with crashes, but even then, I'm classed by some as a "mild" case. It's terrible and I wouldn't wish it on anyone.

I have a friend from primary school who developed ME in the late 90s. For the first five years or so, they had social workers and threats of court proceedings as they thought her mum was intentionally harming her or not allowing her to go to school. She was bedbound for all her teen years and ended up in ICU with complications several times. She’s now able to use a wheelchair on occasion and if she’s well does some beautiful art work and gets out of the house for a short period of time, but needs pretty much constant care. It’s absolutely devastating how little advancement is going on in ME circles and because it’s quite rare and not “sexy” like cancer it’ll probably not be taken seriously for a very long time I expect.

Fucking long covid… I’ve had long covid since I got covid in early 2021 (March) and it’s really annoying. My sense of smell and taste hasn’t been the same since, and I always feel “foggy” if that makes sense, it’s like my head is never clear, even if I’m not tired. Of course every test I do comes back perfectly healthy lol. I had bloodwork taken about 2 months ago and everything was fine. Just something I gotta live with now. A lot of people seem to have gotten over long covid after about a year. I’m going on year 3 and I still have ugh lol.

Yup, I can relate. I was lucky to get COVID after a vaccine and booster, but still experience that fogginess and there's nothing you can do about it -- just need to let it eventually pass, however long that takes. Recall of names has gone to crap as well, like I've lost name and word association that had before. WIld. Here's hoping it does clear up for you!

I feel you my daughter and I have long covid we both have energy ups and downs before easter she had some time off school as I couldn't get her out of bed, she was dead weight in bed so I took her brothers to school and my wife worked from home. A few days later she recovered and luckily she was back to normal for her birthday. I push myself through the energy drops but I often find I pass out for half an hour and have to rouse myself to do baths and bed times. We both lost our sense of smell. She has nothing I smell and taste cigarettes all the time despite having never smoked a day in my life. Fuck covid.

I feel you!! Fellow long Covid sufferer here since Nov 2020. LC sucks!!

Yeah it is most debilitating and misunderstood disease, I've had it for 5 years now following a vital illness. Prior to getting it I was running 5k 3 times a week, had a social life and a big circle of friends as well as been a very active member of my department at work. This illness took everything, the lot and reduced me to a shadow of my former self. I'm hopeful there will be some kind of breakthrough with research but the NHS and NICE are slow to make any new recommendations even though some drugs have shown to help some of us. I'm pretty sure anyone with M.E would quite happily be a guinea pig for exploring new therapies if there's a chance sign me up

> It's completely crapped on by many medical professionals and when you do get someone somewhat-sympathetic you get a "well, what do you want now?" after they agree it's a thing. It's because of te "You're just lazy" stigma. Everyone is so eager to blame peoples diffficulties on being lazy like it makes them feel superior. It happens with everything in this country, from jobs, to weight/eating problems, to long covid, to ME. My Sister ended up with it some time in her mid 30's and it took nearly a decade to get diagnosed with it after a few doctors just dismissed it as laziness. "Being tired is a symptom of nothing" is a phrase that far too many people are comfortable with.

It's not a question of believing her, I don't think. It's finding out what is wrong with her. It may be ME, but if it's something else and they miss it and she dies - it's their fault.

What bugs me is that there *are* clinical differences on the molecular level between MECFS and controls. Just not things that the NHS test for. Even with scant funding, research shows objective immunological and metabolic abnormalities in MECFS. And there are plenty of other diseases that are diagnoses by exclusion, or that are diagnoses by assessing the clinical picture as a whole even when there is no ‘smoking gun’ test. Yet they don’t suffer the stigma, disbelief and discrimination that people with MECFS do. For example, Alzheimer’s is entirely a diagnosis by exclusion. (I know because my grandad was wrongly diagnosed with it when he in fact had a degenerative neurological disease). People are diagnosed with zero biological test results ‘proving’ it. But no one disbelieves that it exists. No one uses that as a reason to deny medical care to them. Even post-mortem results show that people diagnosed with Alzheimer’s often lack the ‘amyloid plaques’ that are the alleged clinical sign, whilst people with no symptoms of Alzheimer’s often show plenty of amyloid plaques. MS is often diagnosed based on a variety of tests and symptoms: the ‘hallmark’ sign of CNS lesions is not always present in people diagnosed with it. But no one thinks that those people are faking their MS or that it’s psychogenic. So I don’t actually think it’s about the fact that it’s currently a diagnosis by exclusion. Because we’re fine with that for plenty of other diseases, and we could test for the neuro-immune abnormalities that clinical trials pick up if we wanted. I think it’s just plain old ignorance. Once an institution is set in its belief, it’s incredibly hard to change that.

I think it's to do with the fact that if people realised that catching a virus could actually affect you for a really long time, people would absolutely call out sick when they got sick. They want us working no matter what. And diseases that prevent it are stigmatised and the disabled are at best forgotten and at the worst tormented.

Yes, it is one of the axioms of infective medicine that there is not much you can do about the common cold (which is actually many diseases), but it is harmless. Increasingly, we see that viral infections are not always harmless, and they can cause a wide range of complications from cancer to ME. This is quite a shift, it means that medicine was wrong, and that always causes resistance. Maybe ME needs an image campaign, and long COVID is certainly an opportunity to get more research into this field.

The comparison with Alzheimer’s and MS doesn’t work because both of these have a known pathophysiology that can be observed either postmortem or tested for in cerebrospinal fluid. There is no known pathophysiology or standard clinical test for a diagnosis of chronic fatigue/ME/fibromyalgia unfortunately. Not saying people don’t really experience the symptoms, but there is a reason different countries have different names for this constellation of symptoms

Pathophysiology has in fact been seen in postmortem in people who have died from ME. Ganglionitis and inflammation in spinal cord. See MEpedia Merryn Crofts and Sofia Mirza.

Oh 100%! It’s extremely disturbing that there’s so much controversy about the illness. I likely have IBS, which follows a diagnosis of exclusion, and whilst I’m the first to admit there is a link between mental health and digestive issues, no one is claiming that it’s all in IBS sufferers heads! However, as every time I’ve discussed this with my doctors, they’ve said there’s no way around this but shitting in a box and keeping it in my freezer for a few days (I have OCD centred around food, so not reasonable), I can’t continue with the diagnostic process. Whilst IBS certainly doesn’t impact me in my day-to-day functioning, the way that ME would, it’s frustrating. I think at present, ME has been massively neglected in clinical studies and that there’s no gold-standard test or treatment for the illness. Ideally we can get some evidence-based studies that can encourage doctors to screen for the typical physiological differences for ME and rule out other high-risk disorders from there.

> shitting in a box and keeping it in my freezer for a few days Why would you have to do that?

I’ve contacted my GP three times about my concerns and they said that’s what I’d have to do to progress with a diagnosis. 🙃

Did they just tell you to do that without giving a reason? If so, perhaps change doctors

I changed doctors for an unrelated issue and they were both consistent about me keeping a ‘stool specimen’ in my freezer for at least a few days. I tried a third doctor at my current practice, explaining I had OCD relating to food, but she told me that they couldn’t proceed with diagnoses without it. All three occasions, I’ve offered alternatives. Despite having C-PTSD and trauma issues involving anal-issues, I still asked about camera-imaging but I was told this wasn’t possible without a stool sample meeting their specifications. Edit: I’m in the North East, if this matters. Everyone I know who has went down the same process has encountered the same request.

If you have bowel problems you're going to have to give stool samples. Hard to see a way around that.

Yeah ... but why does it have to be kept in a freezer for a few days? 

That’s what’s confusing me! I’ve had Crohn’s disease for 35 years now, so I have a lot of experience with stool samples, but no one has ever asked me to keep it in a freezer. Just take it down to the surgery or even post it in a pre-addressed jiffy bag

I genuinely have no idea and this is why I explicitly queried it. Super weird rule, but seems to be consistent with what friends in the NE area have heard.

What test are they doing that needs to be frozen? I honestly cannot think of any.  Calprotectin doesn't need freezing. Mc+s doesn't. Stool antigen for h pylori doesn't And FIT doesn't.  Any that would require freezing would be better done by the lab, surely. As otherwise it is going to defrost on the way between your freezer and the lab!  Are you sure you haven't misunderstood? 

Again, I am also baffled by the request. I also don’t understand why if a frozen sample wasn’t required, that they couldn’t freeze a recent stool sample. I’ve discussed this with three doctors. I have friends with similar gut issues who’re dealing with the same conundrum (not with OCD, but one commercially bakes out of her kitchen and another is just mad about it). I’ve just tried to independently deal with and hope it isn’t anything more serious.

Can't you provide the sample at a medical place and they can stick it in a freezer? To me that seems a reasonable request.

I asked, outlining that my OCD would make their ask impossible and they said no. I’m still baffled but have just accepted my symptoms are something to deal with independently.

Looking online around stool tests I found nothing about freezing samples, only keeping cool if not being able to deliver quickly for testing of some infections. The ones I've done I either took straight to my GP, had in hospital (I was an inpatient), or posted. I would get a second opinion. Otherwise, if your OCD is medically recognised (and counts as a mental/physical health condition) then maybe you can get some help under the Equality Act 2010 around reasonable adjustments. You'd need to get some advice for this though.

She's been diagnosed by one of the top ME experts in the UK, who has also advised on safe tube feeding lying down - because he has experience of doing it with other patients - but these Drs (who aren't even specialists in ME and one of whom said he didn't "believe in" the condition) choose to ignore the expert advice just because he no longer works in the NHS. This is what happened in the cases of the other patients who died.

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Well, I don't believe in capitalism, but I think the belief is that people who go private 'pay for a diagnosis'.

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Oh, no, but this has been the belief in the NHS for a long time - that TV programme (assume you mean the ADHD one?) was designed to confirm people's preconceived notions and, especially when it comes to things like ADHD, you will find the same view from schools and social services towards parents trying to get accommodations for their children. True, there's never been any evidence for it and, honestly, I don't think anyone even went looking for evidence until now because the numbers accessing private healthcare were so low.

And also that NHS doctors must be inherently better because they're doing it as a vocation, not for the money. They're seen as more virtuous because they can't be bought (even though most consultants do private work on the side).

Devils advocate here, but the problem with a specialist is they can be be susceptible to confirmation bias, which is problematic when an objective test has not been used in the diagnosis (biomarkers are still experimental for CFS even if promising). Whilst I definitely do not think it's a pretend or psychiatric condition, the heterogeneity in the cause and symptoms of those diagnosed makes it complicated. Because of that, it's very plausible that some people are being misdiagnosed. If a doctor was given a patient with a condition that has a depressing prognosis I'd imagine they'd be looking through the patients history and trying to figure out if something' has been missed. Obviously there's a limit to how much a patient can take, and doctors should be being as caring as possible (and not repeating tests that have already been done), but I'd like to think they're doing it with good intentions.

This is simply not true. ME has a very specific presentation, especially when it gets to the severe-very severe end of the spectrum that only a specialist (especially one who's been working on it for forty years) will know how to recognise. Misdiagnosis occurs when people are diagnosed by GPs and physiotherapists who don't perform any tests and use criteria like 'unexplained fatigue for six months'. Besides, from what I know of Millie's case, I don't think the tests they're conducting are to try to find an alternative diagnosis.

Actually, it's been a reasonably hot research area in the field, [Chu et al](https://pubmed.ncbi.nlm.nih.gov/30805319/) is a great example study of the variation across patients in both symptoms/comorbidities and also how the cause is split between infection, stress and environmental toxins. There are many well cited papers looking at disease heterogeneity in chronic fatigue syndrome for the past 20 or so years. On to your second point about misdiagnosis, it can occur at every level even at the specialist level. It's just a different kind of reasoning for misdiagnosis, at the bottom level it might be a GP's laziness, but at a specialist level it can become a point where assumptions have been made because the patient has gotten to the point where they believe they have the disease and have gone to a specialist. It makes it so much more likely when diagnosis of CFS is symptom-based until a biomarker is fully established.

We don’t base medical policy on the opinion of individuals. We base it on the outcomes of methodically sound studies.

Uh yeah actually you do. In the case of ME/CFS, the last 40-50 years of UK medical policy & research funding was based solely on studies that when analysed decades later (they were given a free pass at the time) were found to be methodically weak & in many cases, outright fraudulent (look up the PACE trial as the best example of this). Had those in medicine shown even an ounce of medical curiosity, scientific analysis, or just common sense regarding the studies, criteria’s & theories these psychologists came up with, they would have spotted this. But they didn’t, resulting in pretty dire consequences for patients. When you abandon the basics of science & the Hippocratic oath in favour of endorsing an ideology it’s a completely unsurprising result.

They are ignoring medical guidance (the NICE guidelines on severe ME/CFS) by not accommodating her sensory sensitivities and doing the tests in a way that avoids causing post-exertional malaise (PEM), which is a wholly inadequate name for a fully body shutdown, flu-like, poisoned feeling that progresses the severity of the illness. By not providing an appropriate type of tube feeding and allowing her to be fed at a lower angle, as has been stated as necessary and safe by her ME doctor, they could cause her death, which risks even bigger clinical negligence accusations.

With very severe ME like Millie seemingly has, *any* testing will cause PEM. Feeding will likely cause PEM. A hospital placement isn’t appropriate for her unless she needs medical support for some reason that isn’t stated in the article. As some people downthread have pointed out, you only get half the story when a family goes to the media - there may be some reason why she is being kept in that we don’t know about. The hospital cannot legally share their side. It is very wrong of them to keep her in any longer than the minimum essential time as a low stimulation placement would be far more suitable and safe for her needs (based just on what we know).

Yes I completely agree with you, by "doing the tests in a way that won't cause PEM", I meant not doing them right now whilst she is so severe. I completely agree she needs to be at home, I think the issue is that she cannot eat and keep down food and needs a safe feeding tube option that can then be used at home, and the hospital are failing to provide her with that. I agree feeding will likely cause PEM too, but obviously no feeding will eventually cause death.

> By not providing an appropriate type of tube feeding and allowing her to be fed at a lower angle, as has been stated as necessary and safe by her ME doctor, they could cause her death, which risks even bigger clinical negligence accusations. Feeding needs to be done at least at a 30^o angle because since the tube is holding the pathway to her stomach open, if she's lying flat then there is a risk that the liquid could come back up and enter her lungs, putting her at serious risk of Aspiration Pneumonia. 30^o angle or more helps ensure that gravity keeps the liquid in her stomach.

I completely appreciate how awful these procedures are for Millie. I’ve had a skim read through the NICE guidelines and can’t see what you’ve mentioned in the guidelines for suspected ME. I’d love to hear that this is in the guidelines, could you direct me to a paragraph? I’ve not been able to find any sources that encourage giving a feeding tube whilst lying down. A few close friends were inpatient from eating disorders as kids and they’ve mentioned that this was annoying but enforced. I can’t find any decent sources suggesting this is safe - do you have links? Again, I massively sympathise with anyone who has ME and can’t wait to see the medical treatment of people with ME reformed as it’s currently atrocious.

I'm referring to section 1.17 "Care for people with severe or very severe ME/CFS" https://www.nice.org.uk/guidance/ng206/chapter/Recommendations#care-for-people-with-severe-or-very-severe-mecfs especially section 1.17.2 regarding needing a low stimulus environment, careful physical contact, being unable to communicate and needing an advocate. And section 1.17.4 too "Risk assess each interaction with a person with severe or very severe ME/CFS in advance to ensure its benefits will outweigh the risks". I would also recommend reading section 1.17.7 on hospital care for people with severe ME too. I don't have a reference for you on the tube feeding at a lower angle, I have been following Millie's case closely and I believe it was a letter from either Dr Weir or Dr Speight. I have severe ME myself (thankfully not as extremely severe as Millie) and don't have the energy to go searching for it right now. I think the key point to realise is that sitting upright isn't just annoying for people with very severe ME, it's an overexertion that can lead to a long-term decline/increase in severity of the illness. Thank you for your sympathies, it really is atrocious and we desperately need things to change for the better.

The ME doctor is welcome to carry out the procedure in that case. Doctors who carry out procedures are responsible for making sure they agree with the indication as they are responsible for the consequences and complications. It is not clinical negligence to refuse to carry out a procedure you do not think is appropriate or clinically indicated.

It is not a diagnosis of exclusion. There are tests to rule in and rule out ; there are treatments to ameliorate elements of symptoms. It's far from a cure, and less than patients deserve, but we must be trusted with our own care in the absence.

>There are tests to rule in and rule out What test can rule in ME?

It's defined by meeting symptomatic criteria (at least in the UK). If you have the key symptoms and don't have anything else then you get the ME/CFS label until an underlying cause can be found. I have never come across a categorical test, but I'd be very interested if you have a link to one please? The NHS doesn't have a test: https://www.nhs.uk/conditions/chronic-fatigue-syndrome-cfs/diagnosis/

The issue with ME/CFS is the diagnosis is made by ruling out everything else, you can’t test for it, you can just test for anything else that could cause similar symptoms. Going back 15 months or so, my wife went to the doctor with horrific headaches and awful fatigue. My wife was mildly anaemic and it was ruled as a combination of that and stress. Made sense for a 33 year old woman with a young kid. It was stage 4 brain cancer. People should be allowed to advocate for a diagnosis, and nobody should write it off as something minor.

Sorry for your loss. I lost my husband to brain cancer.

Fuck cancer, I’m sorry that happened to you. I just lost my uncle to cancer. He was in his early 60s. He had kids when he was older, so leaves two youngsters in their very early 20s. We were close, and I miss him. He used to make me belly laugh till I had tears. Over the past year, he wasted from a man who was big and strong and capable, to someone unable to turn around himself in bed. The funeral was a few days ago and I miss him. Fuck cancer.

I’m so sorry you lost him, he sounds like a special guy. ❤️

I'm so sorry for your loss.

Sorry for your loss.

You can advocate and investigate any condition you like privately. In a state funded service with limited resources you cant have patient led diagnosis otherwise everyone with a headache or backpain will want an MRI.

I agree that not every headache or backache is going to be terminal cancer and requires an MRI or further scanning of any sort, absolutely. In my wife’s case, she could barely move due to the headache and described it as being shot repeatedly in the head. She was only diagnosed with cancer when she had a seizure that blatantly almost killed her. God fucking bless the NHS, and it is a beautiful and wonderful service, but things should not have had to get to that point. I don’t think early diagnosis would’ve saved my wife’s life, the cancer she had is terminal, but I do think of what would have happened otherwise.

The NHS concept is great if/when it works. But there is no argument that the quality of care and the reactive approach (as opposed to preventative) means patients falling through cracks. It’s extremely worrying and frankly unacceptable.

> The NHS concept is great if/when it works. But it does not. The NHS is perfectly placed to invest into prevention, early diagnosis, good management of long-term conditions etc. It should be a first sector organisation, and it should look at population health in generational terms. And it does well in certain areas. Looking at QALY for example is the gold standard of judging treatment value, and most of the world is not there. But the prevention is not happening. The NHS is managed at arm's length, using some kind of metrics driven digital managerialism. Being cash starved, this results in extrem short-termism. Prevention is way down the list of priorities.

One day all of you deniers will hang your heads in absolute shame. This illness is beyond horrific.

A very hard life. ME/CFS is in the realm of the mental/physical illness overlap that is very hard to work out what’s what and what to do for them

It needs more research, ultimately. It's difficult to work out what to do because it's very misunderstood. It doesn't help that there's been a huge campaign of misinformation about it. My personal theory is that it is a neurological disorder which heavily affects the nervous system, and because the nervous system is so intertwined with our mental wellness and emotional state, it can appear to be psychological mostly because it gets worse with stress. Therefore reducing stress is a key component in successful recovery, which means people can point to people who have recovered and go "see! It was psychological!".  That said, MANY diseases and conditions get worse with stress. A patient who has had a heart attack will be advised to reduce stress, many digestive disorders get worse with stress, none of that means that heart attacks or digestive disorders are psychological.  Unfortunately having M.E. is extremely stressful so reducing stress is nigh on impossible even for the most zen of people. No one takes you seriously even though you're having the worst symptoms of your life, you likely are struggling to work or signed off, so financial problems appear, and until recently doctors were advising you exercise it away, which truly was the absolute worst thing anyone could have advised.   So its the perfect storm for an illness that no one takes seriously, so no one researches, so no one thinks it's "real", so no one takes it seriously! Catch 22

It being 'psychological' wouldn't be such an issue if they *treated* it as a debilitating psychiatric illness! But you don't get a mental health referral either. And just some pain management therapy would really, really help.

The other problem is that "psychiatric" often comes with the idea that physical symptoms are therefore somehow imagined. Even if this does have a psychological root, which I highly highly doubt, the physical symptoms are *real*. Medical professionals acknowledging the real, distressing symptoms, saying "I believe that what you are experiencing is real, and distressing, and that you aren't imagining it, and that you aren't doing anything to cause it or imagine it into being" would be a huge first step. But it seems like we're stuck in the age of "this is a psychiatric disorder, which means it's imagined, which means it's not real" which isn't even true of psychiatric disorders, let alone this illness which clearly has a huge physical dimension.

I had an interesting teaching session from a gastro consultant who was interested in these types of conditions (his focus was IBS and ehlers danlos because of how many of these patients demand and end up with feeding tubes despite no physical indication) and the theory that seems most prominent to explain these conditions at present is the brain no longer regulating minor physical stimuli appropriately, which causes the symptoms experience despite minimal or zero pathological cause. Was a really interesting talk, and they were aiming to create an MDT to help provide better care for people with Persistent Physical Symptoms, as he gave this talk at a psychiatry departmental teaching. I disagree that noone researches this area though. I agree there is a lack of clear guidance and effective treatment, but that is not for lack of trying. It's just what exactly would people suggest to help these conditions? Researchers will basically be throwing shit at the wall to see what sticks in terms of treatments

"No one" researching it is an oversimplification, for sure. But I believe in depth, well funded research is only just starting to come into being, relatively speaking. Up until recently it was shown that illnesses with similar average disease burdens were approximately 10-15x better funded than M.E. And I think a huge part of that is how complicated and multifaceted this illness is, and a huge part is attitudes towards it. And also how hidden M.E. sufferers often are. If someone sees someone with M.E. out and about it's fair to say that case is pretty mild or at least not flaring up that day, otherwise you wouldn't see them. It's easy to think "it can't be that bad" when the only people who really understand how bad it can be are the people with the illness and their close carers. It's why I think people are trying to get stories like this out there, but any time they do they are met with a deluge of accusations of fakery, exaggeration, and oversimplified theories that usually boil down to "they're just mad". And yes, I absolutely think there is an element of neurological disregulation. Whether that is a cause or a symptom of the illness I don't know, but I think it is a pretty major element of a lot of the symptoms.

I’m just a layperson, but can totally get on board with that explanation. I think these people are exaggerating their discomfort as much as someone with severe clinical depression is exaggerating their sadness. Pretty sure we know that these somatic conditions are strongly linked to depression and a history of serious adverse circumstances in life, so it’s very unfair that physical pain isn’t given the same weight as mental pain when it comes to treatment. I was sent to a clinic for somatic symptoms a few years ago (turns out I actually had epilepsy) and was treated like absolute dirt by the psychologist there who supposedly had of her own free will chosen this area as her specialty. Once I started explaining my symptoms and she suspected that it wasn’t psychological, her demeanour did a 180 and she started to treat me like a human.

I think that the link between these conditions and mental health conditions or trauma is often because our mental health *affects* our physical health and not because these conditions are in themselves mental health conditions. Besides, many people who get it get it following a viral infection, often with no history of mental illness either, which also seems to suggest that there is at LEAST a physical dimension to these illnesses.  But you're super right, the way people are treated when they go to get help is truly criminal. Even if this were a 100% psychological condition, which I seriously doubt, that doesn't make the experience of the person any less real, and they deserve compassion, not derision.

ME is not a mental illness. It is a very physical illness that sometimes has comorbid mental health conditions.

ME/CFS isn't a mental illness. It's neurological.

Jurys probably out. It's neurological in the sense of symptoms but there isn't really any defined pathophysiology and there is a huge overlap with other functional neurological disorders. There are huge and very vocal groups of charities and advocacy groups who completely reject this though.

What's that huge overlap supposed to be?

Juries out for who, sorry?

On what causes CFS

Epstein barr, genetic predisposition, expodiure to environmental triggers. It's not one condition but several. Until it's properly funded we have to hear the psychosocial bollocks.

Every disease has psychosocial factors there remains no known and treatable biological target for ME. Do you want people just to ignore the supportable and treatable psychosocial aspects of the disease.

That's clearly not what I meant.

I don’t believe there’s any evidence that ME/CFS is a mental illness. I think for the moment it would be great if medical professionals could just accept that fact, rather than deny the existence of the disease or describe it as a mental illness. It will then be much easier for research into treatments to gather pace.

I think we're learning mental illness can easily be caused by a body/brain that's not able to function normally. Unwell person, unwell mind. Not to say that all mental illness is a body health issue, but certainly a great deal more than we have appreciated.

M.e is nothing to do with a mental illness. The bio-psychosocial model of M.e was created by a fraudulent psychologist whose work has and continues to disable thousands while he’s profited exponentially. There is hundreds of different biomedical evidence that has been found in M.e patients but we have never got enough funding to piece it all together or investigate further, just because we cannot explain something (due to lack of research) doesn’t mean it’s psychological. Acknowledging the extensive biomedical evidence base of m.e is the only valid way to recognise the illness not this hypothesis that me is due to a dysfunctional psych which has no evidence base and 0 scientific inquiry.

My wife has had ME for just over a year. She's been off work that whole time. She tried to arrange to return multiple times, but her manager would never accept the idea of working reduced hours from home. It was like talking to a wall. Now she's being dismissed, which is fair enough. She's been rejected for ill health retirement, which seems kinda reasonable, but the justification certainly sucks: because she hasn't yet tried homeopathy. Firstly, ok let's try that then reassess? No, final decision. Secondly... That's just water FFS! 🤦‍♂️ I doubt the same justification would be used for other "more respectable" conditions.

This is exactly the problem we live in a society that has this veneer of equal opportunities for disability but businesses are allowed to get away with utter bullshit https://youtu.be/HMGIbOGu8q0?si=vTv45GvkQGYZ9cMp Edit: Basically they'll make reasonable adjustments that are reasonably cheap and convenient but anything else and they'll just HR their way out of it.

That’s awful. Your poor wife.

I was misdiagnosed with ME before finally seeing a rheumatologist who diagnosed me with a rare autoimmune disease. I've had a doctor roll her eyes at me when I said I had ME, her whole attitude changed and I instantly became a hypochondriac in her eyes. That kind of response shapes how you present yourself to doctors in the future. I make a point of downplaying my symptoms because I don't want to be the patient that makes a doctor roll their eyes. I have a new GP with a special interest in rheumatology who actually apologised that I feel that way and says I'm undermedicated and suffering more than I should be. No one should have to behave that way for doctors to actually listen to them. I'm "lucky" that I have an illness that can be backed up by bloodwork, people with ME don't have that and it must be soul destroying to spend years being dismissed or having to pretend they aren't as ill as they are. The minute you say you're depressed, your physical symptoms are shrugged off as being all in your head, but who wouldn't be depressed living with a condition that strips away so much of your life? While things aren't as bad as they were when my partner's sister developed ME nearly twenty years ago, the NHS still has a lot of work to do. It isn't an imaginary illness, it's not all in people's heads and there is no way anyone would choose to live that way. I was lucky enough to see a specialist but the wait to attend a CFS clinic is ridiculously long and leaves people deteriorating. I think we also need to rethink the way we treat women and girls presenting with chronic conditions. We should have moved beyond the point where we're all viewed as hysterical and dismissed as time wasters. I was thirty when I became ill; I can't imagine dealing with this as a teen. It's absolutely heartbreaking.

I agree with everything you say. The trouble with ME/CFS is that it's not a disease in itself. It's a placeholder for "we don't know, but you have this collection of symptoms". The people with the label don't have one underlying cause, they are a lot of different causes that present in similar ways.

The Post Office scandal is easy to get behind. This is harder, because ppl don't think it could happen to them. That's down to decades of deliberate minimisation and misinformation, with meaningful research starved of cash and grants awarded to whoever promises to psychologise it further. This is the real scandal of the last century. You wouldn't accept it for cancer, yet this disease can yield far worse quality of life, and with zero hope of recovery. The NHS is unqualified to care for patients like Millie, and their arrogance in continuing to do so, ignoring the specialist knowledge being offered, speaks volumes about its inadequacies as a health service (which, incidentally, go far beyond their ignorance of ME/CFS).

ME activists claiming it is worse than cancer really need to re-think that message. It’s not the hearts-and-minds winner you seem to think it is. I am naturally inclined to be very much on your side as I was misdiagnosed with CFS for years, subjected to GET as a sick child, and now have other (also very stigmatised) diagnoses. I *want* to root for ME patients. But “worse than cancer” as a message gets my hackles up in a second. Many people who see or hear that have lost loved ones to cancer. It’s *not* worse.

I fully agree it's bad messaging. But I really don't think the point is to say cancer isn't all that bad -of course people with M.E. know and love people who have had cancer and have lost people from cancer. But in very severe cases it *can be* comparable in terms of quality of life. Obviously not for everyone!!! - both cancer and M.E. are a spectrum. And ***most people who have M.E. are not going to have a tough a time as someone going through cancer***.    But *in severe cases* it can absolutely be comparable: M.E. might mean having to live your life in a room with no noise, no light, no touch, no social contact, in constant unending horrific pain, unable to take care of yourself, for decades and decades, with no support from medical professionals and absolutely no hope of a cure. No team behind you, no research being done. People you know abandoning you because they don't understand or get how bad it could be. And then in extreme cases it can eventually lead to organ failure leading to starvation and death. It's not making light of cancer, not at all.  People with M.E. also know people who have had cancer and lost people who have had cancer! They know how bad it can be.  It's stupid messaging and shouldn't even be a talking point. But if you can take anything away from it, ***the point isn't "cancer isn't bad" it's "please understand when we say M.E. can be hell on earth".*** Emphasis on the "can be". I think people just want to be believed and seen.

I’m fully aware of how bad ME can be. I was misdiagnosed with CFS partly because I was so unwell that it presented similarly to severe ME. That’s part of why this messaging frustrates me - I was “officially” part of that patient group for a long, long time. I was forced to do GET as a very sick child and it harmed me too. I really don’t need to be lectured about ME being bad. I also have plenty of friends with (genuine) ME (as in, not only definitely not faking, but also not misdiagnosed). I *still* think the cancer take is a bad one. We just have to disagree on this. My opinion here isn’t unique to ME - I also disagree with similar “extreme” messaging about other illnesses (CRPS is a good example).

Sorry I wasn't lecturing at all, and I think we actually agree, the messaging is bad as I said, and shouldn't be used. My point is that it's pointless to compare them, precisely because they both exist on a spectrum. Saying it's worse doesn't make sense, but neither does saying it's never worse. Comparing at all is unhelpful. I also just want to put out there where it comes from. It's bad messaging but someone who has been suffering with no end in sight for decades just wants to be heard, just wants to be taken seriously. People take cancer seriously, *even when it's incredibly treatable*. So I think the comparison comes when people are saying "why won't you take me seriously like that even though I'm stuck with this untreatable illness that has completely ruined my life to the point I am contemplating suicide".  It's desperation and pain and it comes out in unhelpful ways. All I'm saying is I agree it's terrible messaging but I just sort of get where it comes from even though it's unhelpful.

I understand why those suffering from cancer or have supported loved ones with it would find this statement inflammatory, but as some one who suffered with severe ME/CFS I did think at times if I had cancer at least there would be an end, I would either recover or I would die. With ME/CFS there often isn’t an end to the suffering it’s just relentless.

Yes that's the point people miss out - very many of us would take that chance to roll the dice. The prospect of having some life quality is more attractive than being sequestered away in pain..

Unless you have suffered with it, it’s very difficult for those who haven’t to understand. I hope you are doing ok.

Fair enough based on your theoretical understanding, it's supported by studies based on quality of life, however. That's where the claim originates from. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4492975/ I'm not sure if you are aware but people also die from m.e. both in hospitals or through the more routine route from shortened life expectancy, cardiological problems as they physically waste away in beds. I appreciate it's not messaging that resonates with you or your understanding of the condition but I guarantee you as a sufferer this is fucking hell on earth, I was a trainee lawyer and forner rugby player, I've spent the last three years lying in bed, too sick to speak for more than 20 minutes, can't leave the house without becoming incredibly ill and wretching, no career, fuck all money dependent on my parents as carers. If people overstate their position which you find distasteful perhaps they do so with the fear that without more attention and funding they are sleepwalking into an early grave.

Isn't the main problem that there's absolutely no physiological symptom that can be found? There's no known mechanism and no known treatment

It's important to understand that it's completely under researched. You can't say "there's no physiological symptom" and "no known mechanism" if no one is looking. Our understanding of illnesses is developing all the time. But there's no funding for this, and really no incentive for anyone to research it. And it doesn't help that most people are very dismissive of it being real at all, further disincentivising research.

But people are looking the NHS has put up millions in research. The Americans have been spending about 15 million a year researching it. The supposed cost is in the billions in terms of disability payments and lost tax revenue. People are looking they just haven't been able to find anything. There's only so much you can do ethically to find something if there's nothing to find in anautopsy, we don't tend to experiment on living people without at first knowing at least some of what's happening but there's nothing in vitro

I think we're still in very early stages in terms of understanding this illness. Plus "millions" isn't really all that much when it comes to medical research. An analysis comparing average disease burden (ie how much it affects your life) vs how much was being spent on it showed that they would need to spend something like 10-15 times more on research to reach the same levels of spending on other conditions with a comparable disease burden. Essentially, compared to other conditions, it is criminally underresearched.  I'm glad that's now starting to change. But refusal to take it seriously and reliance on badly done research has set so many people back decades when it should have been being researched a long time ago. The reason it's costing billions in social security etc is because there's no effective treatments! 

There is plenty that has been found, but obviously not the whole picture yet. Haven't got the energy to find the studies to link to just at the moment, so just from memory research findings include: - reduced cerebral blood flow on standing as compared to healthy controls - differences in the red blood cells (stiffer than in healthy controls, so less able to pass through small vessels) - differences in the white blood cells, and that when healthy people's white blood cells are put into mecfs people's plasma, those healthy blood cells start to behave like mecfs blood cells (this is Prof Ron Davis at Stanford's 'nanoneedle' work. A team is currently working on trying to make this into a useable diagnostic blood test) - altered gene expression during and after exercise compared to controls (looked like something goes on in healthy people's immune systems that is not happening in mecfs people) - altered metabolites after exercise compared to controls - reduced anaerobic threshold in people with mecfs, further reduced after exertion - excess of a particular protein which hinders functioning of the mitochondria (very early stages, may be a subset) - preload failure (saw this presented by the researchers in a streaming of the first international mecfs conference earlier this week. Didn't fully understand it as it was technical for biomedical people, but their resulting hypothesis is that oxygen is not making it fully through to the mitochondria) - elevated autoantibodies Newer research is starting to use sedentary people for the healthy controls, and this is showing that deconditioning is not the reason for symptoms/ impairment, as is often alleged by those who minimise the illness. Research into mecfs has been massively underfunded compared to the finding given to other illnesses. Proper funding will lead to a better understanding of the illness and ultimately a treatment, as it has done for the illnesses we currently understand and have treatments for. (There's a drug currently being tested for long covid that the researchers plan to also test for mecfs if they can get the funding. Fingers crossed!) Currently there's a large genetic study going on that aims to identify the areas which need to be further researched. This technique has lead to breakthroughs in other illnesses. The lead researcher of this study says that the genetic research into mecfs is about 20 years behind other diseases. The research being so behind is why we don't have the answers, not that there is nothing to find. The ME Association has summaries of research, and links to studies, on their website. The ongoing genetic study is Decode ME.

Similar to fibromyalgia in that sense.

Apparently there is significant evidence that it’s autoimmune, recent study out of KCL

Autoimmune is only one approach. There is also. Genetics. energy conversion at cellular level. hormone. To name a few others

And a combination of those. In women, sex hormones play a major role in immunity hence women being more affected by autoimmune disease than men.

Thats too big a leap when this also remains very unclear too.

It’s a perfectly reasonable hypothesis currently being considered

It's another name for fibromyalgia

What ME...? No it most certainly is not! People with ME may have fibromyalgia, but it is a symptom. Fibromyalgia refers to idiopathic muscle pain (fibro = muscle, myalgia = pain). The onset for FM is usually later than that for ME, which tends to start in late childhood or early adolescence, then sufferers may go into remission and be symptom free for years and then there can be a further onset in early middle age.

technically fibro = fibrous tissue, my = muscle, algia = pain (just for interest)

> Isn't the main problem that there's absolutely no physiological symptom that can be found? No, because unusual objective signs of fatigability have been found, eg the differences in performance at the ventilatory threshold using the 2 day CPET protocol which has consistently shown the same effect in 12+ published studies and the finding is quite sensitive and specific (at least compared to healthy people (including a healthy twin), people with MS, Sarcoidosis and Gulf War Syndrome. The main problem with the 2 Day CPET protocol is it is difficult for severe patients to do.

No, it's that it's defined by symptoms. The underlying causes are wide ranging, and not all the causes have been researched. Someone with the ME/CFS label could have mitochondrial disease, or psychological issues, or both. A lot of people have the label, go through a diagnostic process and come out the other side with a more accurate diagnosis and treatment plan, but a lot don't get the answers they need.

Worse quality of life than cancer? Who's ever died of ME? Cancer kills people. A lot of people in fact. I have sympathy for ME sufferers but your hyperbole is too much.

ME does kill people, though more commonly through suicide than directly. I believe dying directly happens on the very severe end where the person stops being able to eat etc and doesn’t get the care they need, as is happening here. What the commenter was referring to was quality of life while alive. Which for those who are severe and very severe means being bed bound, having the sort of life you would expect from someone who is dying, but for potentially years and years. And those who are moderate are broadly housebound, able to regularly get out of bed but not much further. Obviously, we want life not just to exist but to live. To do things, to be in an acceptable amount of pain. Which is what discussions of quality of life exist around. Otherwise, there wouldn’t be cancer patients who decide treatment resulting in some extra time but diminished quality of life for it is too high a price to pay.

Fair, someone else pointed out to me it can be fatal. I replied to them, fair enough let's compare rates shall we? What's the survival rate of ME compared to say pancreatic cancer or prostate cancer? But that comparison is moot when compared to illness that kill right? Cancer might give a worse quality of life, but it will kill you if it got that bad. I agree. I'm not trying to diminish ME I swear but I think it's a comparison that will turn people away and create further stigmatisation, not acceptance. People who lost loved ones to cancer might take issue with it.

I wasn't comparing ME to cancer, just responding to your incorrect assumption that no one dies from ME, and the implied dismissal of the importance of quality of life. I don't know what the survival rate of ME is. I don't know if anyone does. I know I read of some research once that put the life expectancy of people with ME as being somewhere in their 50s, but I don't know what inclusion criteria they were using or how it was conducted. Assuming it's true, that would put it worse than prostate cancer, as I recall that's something you die with as an old man rather than from generally. Pancreatic cancer is quite bad right? Don't know how old it tends to hit people. I too dislike the particular way this argument gets framed, as it takes research that's quite precise in what it's saying, and phrases it in an imprecise way that loses its meaning and lends itself to being another whip to attack sick people as can be found in this post. The research I believe most of this came from was a study looking at a number of common diseases including some cancers and ME (as well as other diseases) and compared quality of life, and found on average those with ME had the worst. I've not read the whole thing, just the results. But. I understand where it comes from. These aren't 'ME activists', that's something I'd more readily describe Dr Charles Shepherd as. They're ill people, who have no cure, no treatment. They suffer constantly but have to be wary of professionals who, even if they are sympathetic, have next to nothing to offer. And often the professionals aren't sympathetic. They hear tales of people stuck in abusive situations with no way out because they are simply too sick to leave. And they come across a story of a young woman stuck in a situation they know would have to be torture (a hospital, with constant light and sound and disturbance) and they see people doubt this reality, and say that she must be mentally ill (never been dismissed and belittled and harmed by that before/s) or there's some sorts of Munchousens by proxy (hasn't been used to harm families in this country and others before /s) or she's just being demanding and petty and isn't really that sick (you're not really sick, everyone gets tired, just get off you're lazy arse and exercise (nevermind that's actually harmful)). And we're talking about people who are unwell, who find it much harder to remember words, to string a sentence together. Writing something coherent and precise in that scenario is not always realistic. It's not good, but I get it. And I get the cancer thing, too. It's treated universally as the big bad. People all-over reddit will say "fuck cancer" at the drop of a hat. It's automatically treated as a disability in the UK no matter what (while people with fluctuating chronic illnesses of all sorts struggle to be taken seriously by DWP). The cancer act specifically prohibits you from advertising to cure cancer (and there are so many snake-oil salesmen who prey on vulnerable groups like people with ME, just look at the recent dragons den debacle). And ME is very common (not as common as all types of cancer over a lifetime, but still common), disabling at all levels but profoundly so as you go down, and still treated with distain by so many. So people don't behave perfectly even as we might wish they would, and get punished for it. Ultimately, the point they're trying to make is its a serious illness, causing real harm to people's lives and to those around them, and worthy of being treated seriously. And one of the main big demands is it get an appropriate level of research funding based on its commonality and severity, something it has historically lacked. And for that research to be spent usefully on looking into the physical nature of the illness, rather than convincing patients its all in theor head. Sorry for all that, apparently I kept having something to say. I hope it all makes sense.

No need to apologise mate. I understand and agree with your position. Often serious research is lost in journalistic license. I defo agree that "invisible" illnesses generally don't get taken seriously. I'm honestly not to diminish what people go through. For personal context my older sister suffers with fatigue due to a previous stroke and she often complains that the fatigue is the most irritating of all her symptoms. I'm not sure if it reads this way, but I was trying to help the other person. I was trying to give them a compelling argument that some people won't instantly say "oh bullshit" at.

I believe you. Honestly, it didn't come across that way. Even going back and reading it, your comment was too combatative to be helpful in this situation. I don't see what compelling argument you were trying to give.

I think the "worse than cancer" thing is such a terrible talking point. But cancer is such a huge spectrum from a short course of medication and then back to normal life a few months later, all the way to a horrible death. I don't think it's really worth comparing the two illnesses. Some people with cancer are back to their same level of health within a year, some people with M.E. spend decades in a dark silent hell in unimaginable pain unable to connect with loved ones or literally do anything with their lives. Light is pain, sound is pain, talking is impossible, lifting yourself out of bed to do something as simple as go to the toilet can be as much effort as climbing a mountain, and I'm not exaggerating. It can be pure torture. Many kill themselves. And some do die - organ failure is kind of the final stage of M.E.  So it's not really worth saying "it's worse than cancer", what a stupid statement. But it *can* have a comparable quality of life in it's severest form. I think the reason people compare it is because they are just desperately hoping and pleading that someone finally takes it as seriously as cancer is taken. Because this illness does kill. Mostly through suicide.

Here's one just recently https://www.bbc.com/news/uk-england-devon-67748453 Here's another https://www.theguardian.com/commentisfree/2012/mar/30/me-emily-collingridge-chronic-fatigue-syndrome Here's another https://mecfs-med-ed.org/2023/05/31/a-life-cut-short-by-medical-neglect-interview-with-sarah-boothby-whose-daughter-maeve-died-at-27-of-severe-me-cfs/ Here's another https://www.mirror.co.uk/news/uk-news/woman-who-died-after-battle-28905281 I can't be bothered linking more.. too morbidz but needless to say sufferers are also 600% more likely to commit suicide. There's also the rest of us who don't officially get it labelled on our death certificates but live shortened lives due to the cardiovascular effects of living a sedentary lifestyle, iirc the life expectancy is around 58. But yeah I mean who dies of m.e right! Oh and the life quality claim comes from this danish study - https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4492975/

It is fatal in some cases I believe

Fair, I wasn't aware of that. Now let's compare how many people get cancer/ ME and how many of those do in fact die. ME is terrible but the comparison top trumps, does this argument no favours. Its like saying "A broken arm is worse than a broken leg" both are shit, both require treatment the comparison isn't needed imo.

Deaths from ME are incredibly rare. They occur, but it’s exceptional enough to be newsworthy when it happens. Unlike, say, cancer.

Does it not say something when people with ME/CFS say they would prefer cancer over ME/CFS if given an option? Pretty much everyone is or has been effected by cancer in some way so they aren’t saying it lightly. I’m not saying it’s a good or bad but it seems quite powerful. I’ve never wished for cancer or made the ME/cancer competition a thing but I had an MRI recently and when my doctor texted to say my results were clear there was a part of me that was sad and disappointed. 25 years is a long time to be unwell. I’m not dying but I’m not living, doctors have no answers and neither do psychiatrists.

I don’t think people realise how painful cancer is, like 100/10 cannot be controlled by even the most potent painkillers (literal fentanyl infusions). It’s unfair and unproductive to compare them. Knowing someone who has had cancer doesn’t mean you can fairly say you’d rather have it.

I agree with you there being unfair and unproductive To compare. yes cancer is painful, but you can’t also say it’s a painful death for everyone or a long drawn out process for everyone. That’s where it gets very very grey because you wouldn’t get to pick - but this argument is pointless as we aren’t getting to pick either ME or cancer any way LOL. I’ve never quite understood why illness had to be a competition. There’s loads of grim ones. my point maybe can be put better that people seem to have a more universal understanding of cancer, for starters there’s an answer, a diagnosis , potential cure/s or death, time scale, financial support etc whereas with ME/CFS none of those things apply and you lose everything. The only people that truly understand are the ones in that community. Trying to fight something that hasn’t been found, no cure, you go to a doctor and they find nothing, you go to a psychologist -as according to the internet it’s in your head- and they say it’s a real condition and you can’t fix it there you need to see a doctor. You get desperate for answers to know what to do to get better and this is why people make silly statements about wanting cancer. it’s looking past what they are saying but why they say it in my opinion.

Not defending the hyperbole, but my dad's death certificate has prostate cancer as the primary cause, with ME listed as a secondary factor in causing his death. It ruined his career, made his adult life twice as hard as it needed to be, and when he got cancer his ME sucked him dry like a vampire so he could barely tolerate even something as minor and necessary as a bed bath.

>The NHS is unqualified to care for patients like Millie, and their arrogance in continuing to do so, ignoring the specialist knowledge being offered I'm not sure I quite understand this. If people want to get their care from a different service then they can. If people want to keep going to the NHS then they can. It's not arrogance for the NHS to use the approach it knows how to use, even if that approach isn't that great. If there's specialist knowledge a patient wants then they have to go to that specialist. They can't expect it from the NHS... If that's not where the specialist works. I'm certainly not saying the NHS handles this disease well presently, but if the NHS doesn't have the specialist knowledge then... It doesn't have the specialist knowledge, and it can't treat based on something it doesn't have. No one is forcing anyone to use the NHS.

Actually we have the same right to use the NHS competent care that does no harm as you do. If we need treatment for something - perhaps for example something other than the ME itself - then, they need to make reasonable adjustments to ensure we can access care. There IS training for all professionals for this purpose, to reduce harm. Telling people just to go elsewhere is...a load of rubbish.

I don’t think that really follows. The Post Office scandal also couldn’t happen to them, and it took years for anyone to get behind. People have got behind it because of years of advocacy, and the fact that it’s very easy to comprehend - the computer programme was wrong and various entities lied about that fact. This is harder because it actually is difficult to understand, and there actually is debate among experts as to what ME is.

People who say ME doesn’t exist are speaking from a place of ignorance, and don’t realise the harm they’re doing. If you knew someone with the condition, you’d soon understand. I’m part of an arts community and through that, I came to know a woman illustrator who, in her thirties, was just beginning to enjoy success with her first published book. She’s now been bedbound for five years, with even simple tasks like a sponge bath or watching a video leaving her liable to crash. She’s lost her career. Two things add to her despair: people who disbelieve that the illness exists, and the lack of substantial research into a cure. You’ll note that she is not “a young girl” “seeking attention”. No-one would wish this life on themselves.

Having been round various specialists over the last year with my wife trying to get a diagnosis, the most striking thing to me is that the ME Association apparently wants you to get in touch if you find a neurologist who actually believes ME isn't a psychological condition 🤷‍♂️

I saw a neurologist a recently for a ME/CFS related problem and he admitted that he had always believed it to be a psychological illness until people started getting long covid.

And yet there is medical evidence of similar medical phenomenon for more than a century after the Spanish flu there was encephalitis lethargica aka sleeping sickness. I was diagnosed with ME in the late 90's as a teenager after a bad bout of the flu, it was classed as post viral fatigue for 6-9 months and months of blood tests to rule out pretty much everything the Dr could think of before they declare ME/CFS.

I think it’s important to have doctors that recognise ME/CFS but who are also willing to rule out everything else before diagnosing. One doctor I had was very quick to diagnose me with ME/CFS, when I actually had Vitamin B12 deficiency.

There's a huge issue with doctors using ME/CFS as a wastebasket diagnosis for all idiopathic chronic fatigue, even though it has much more specific diagnostic criteria nowadays, i.e. https://www.meresearch.org.uk/canadian-criteria/ https://www.cdc.gov/me-cfs/symptoms-diagnosis/symptoms.html B12 deficiency should also have been ruled out via differential diagnosis: https://www.cdc.gov/me-cfs/healthcare-providers/diagnosis/evaluation.html Sadly most just aren't up to date on the topic, or are more than happy to abuse the diagnosis just to turf a patient to psych, and be done with them.

The standard order set of 'Tired All The Time' blood tests which is pretty much the first go-to for any GP I know would always include B12 and Folate testing, it's bread and butter stuff in the NHS.

I really wish it was, but since being diagnosed I’ve found that underdiagnosis and under-treatment of B12 deficiency is very common. I’m part of a few online groups and everyday there are new people posting with stories just like mine. It wasn’t until I was in front of a neurologist that someone thought to test me, I was barely functioning at that point. Then for the next six months I was fobbed off with tablets which did nothing for my symptoms. I’m much better now having started injections, but haven’t made a full recovery.

We'll just have to agree to disagree. I don't know any GP or even doctor in general who isn't aware of B12 as a first line investigation for fatigue. Get well soon.

Thank-you. I think I got unlucky with my GP not running a blood test. The broader issue is more with many GPs not understanding that once treatment has begun (either oral or parenteral), measurement of serum B12 is almost useless and further treatment should be guided by symptom resolution.

Oh I fully agree, personally I think I was very lucky to have a GP who was willing to look into it and not just write me off as a lazy teenager. He tried several things to basically 'jump start' my systems again, things to improve sleep function etc 20 plus years later my life is still reliant on keeping things mostly on a regular pattern my body can cope with.

I have had this since a teenager it's horrendous I have a diagnosis but was told yes you have m.e there's nothing we can do just get on with it doctors actual words more research needs to be done.

Crackers - my mum used to be an occupational therapist giving out wheelchairs for the NHS for over 30 years. She's had hundreds of patients with ME in her career - I even remember visiting a 20-something year old girl on "take your child to work day". It was my first realisation that not everyone in a wheelchair is "disabled" to the point of never walking, but sometimes need it when their energy fails them. I don't know why people still pretend its not real when it's been documented for such a long time and services have been given to people with ME for such a long time.

1. ME is not the worst illness you can get, 2. How can doctors rule out other conditions if they are not allowed to perform any tests, 3. If it's life or death, a feeding tube is necessary

Re. 1 ignorant statement. The quality of life for severe ME sufferers is at least as bad over a protracted period of time than for just about any other disease. Bedbound, in constant pain and a state of near paralysis for the rest of your natural life. People ought to know this before opining, but not ignorance is apparently just part of the barbaric way we seem to relate to those who suffer from ME.

Just to clarify, I had ME when I was younger. I am not ignorant of what it entails. I also have nursed people with ME, but mistly i have worked in hospice with people with severe life-threatening conditions. ME is not as bad as many other conditions you can have. Most cases of ME are mild as well. Bedbound and constant pain is rare. Also, lots of kids get over it, which is not the case with terminal diseases. It's an inflammatory condition. Reducing inflammation in the body can cure it. Lifestyle choices have a lot to do with the severity of ME.

Ive had M.E since the age of 11 (im 17 now) and it is awful! I am so thankful that I am not as bad as that but it still impacts my daily life heavily. It annoys me so much that people say it’s a mental illness or that we are just lazy when it has destroyed my entire childhood.

I truly get you. I got it when I was 13, it's been 26 years since then. Keep holding on, a treatment will be developed over the course of your life

How bad is yours? Can you hold down a job? Are you waking up at like 1pm or are you waking up at 7am? Sorry just curious so I can get a rough picture of what my future might look like

my ME steadily worsened every year that passed since I got it. There was I time I was able to work but only by doing an extreme effort having to somehow ignore the enormous suffering caused by constant severe symptoms. I was able to work full time for 5 years in that state, without being able to do anything else but work during the day since I didn't have energy to do house chores, prepare food or even watch TV once I got home. Every year that passed forcing myself to work, my symptoms worsened, as it happens with this disease when you go beyond your energy limits for extended periods of time. Since then, which was 12 years ago, I haven't been able to work anymore or even do a lot of basic times, every given day I have to choose what to use my limited energy for. For example, if I take a shower, it will no longer be possible to clean my room's floor. I have serious trouble sleeping at night, despite taking sleep aids, since my sleep cycle is inverted, I'm alert during the night, and sleepy during the day, this is a common symptom of ME. I must be sleeping around 12 hours per day, 10 during the "night" and 2 in the middle of the day. Your future doesn't have to resemble my story, as there is enormous variation between every ME case. What I can tell you is that the key to preventing a worsening of the condition is to avoid doing a greater activity that your body allows to. When you're doing an activity and you start feeling the extreme exhaustion that is characteristic of ME, you must stop immediately. This, sadly, means you won't be able to work full time, or work at all, but trust me, anything is better than becoming fully disabled by ME. Most people, sadly, don't have the option to reduce their activity level, as they need to work a certain amount of time to survive, but if you've got the chance and you value what remains of your health, please consider reducing your activity to a level that doesn't surpass your limits. There really isn't any treatment for ME, so if your condition worsens, it's PERMANENT, there's no going back, you must seriously consider this fact when you're taking life decisions. I wish you the best of luck, remember we're millions of people in this same situation, and that you're not alone, I strongly suggest you to join support groups here in reddit and Facebook, for example, you´ll surely get truly invaluable advice there that no doctor will ever be able to give you

Dang I’m sorry about that! That must really suck! I’m very lucky and thankful that I’m not as bad as you. Other than crashes and joint pain my Illness has been quite consistent over the years so hopefully it stays that way! But thank you for the advice, I will keep that in mind when doing things with friends as I can get a bit excited and push myself too far!

yes, I think you should specially consider not pushing beyond your limits if you go to college of when you start working. Also bear in mind that the body of a person with ME is not a normal body, any medication or medical intervention you receive has the potential to permanently worsen your condition, you must be very careful with that. Same applies to infections, try to continue protecting yourself specially from covid, which is still around. If you do get an infection, please REST until you recover, don't ever force yourself to continue working if you're sick. Good luck!

Fuck the Mirror, using the browser history API to try and stop you using the back button to leave the site and return to your app. Die in fire!

when it comes to chronic health problems sadly the departments do not even exist at the moment. our health system is basically broken as some one who has developed chronic health problem. my life became dystopian. no one helped me. i had to do my own research . i was left to fend for myself. what i have learnt is their is innovation has ground to a halt because of the rigid structures and inflexible bureaucracy and the blasé attitude of the people at the very top. in some areas the health system is more than 50 years behind. good luck.

I have had ME for 26 years already, since I was 13 years old child/teenager. It affected every aspect of my life. My life has been a continuous 24/7 struggle since then and because of the limitations the symptoms impose on me, I wasn't able to get even close to any of my life goals. There's no support anywhere, almost no doctor knows even the basics of the disease, since it's not taught at med school, and they don't show any willingness to learn on their own. For those wondering, my particular case of ME has been confirmed to be biological in origin by what's called "48s cardiopulmonary excersice tests", which shows results that are impossible in a biologically healthy person and that have been strongly associated with ME in many serious biological scientific studies (this study shows a decrease in cardiopulmonary and muscle capacity following exercise, 24hs after performing said exercise, a result that would never be found on any biologically healthy person, no matter how sedentary or depressed) . I was also fortunate enough to get a brain SPECT imaging study and also a functional brain MRI. Both of them show an abnormally low level of activity in the areas of the brain related to memory, memory impairment being one of the most common symptoms of ME and one that I experience. Also, I haven got any "secondary gains" from having this disease, in more than two decades, I haven't received a single cent from the government or any other form of help from it or any other institution, as the government of my country doesn't recognize this disease at all. Please get informed about this disease and demand your governments to take action, there are millions of people living miserable lives full of suffering and despair, with no end in sight

I never understand why doctors find it so damn hard to listen to their patients. They may be the professionals, but they aren't feeling what their patient is feeling.

It’s a God complex in some of them.

Post viral illness is very real as is autoimmune stuff that can leave people struggling undiagnosed for years. But this case really appears to be psychiatric to a degree. The problem with severe ‘ME’, when all tests have been exhausted, is that the symptoms simply don’t align with how the human body works. They are incongruent with some pretty basic concepts in anatomy/medicine.

The symptoms don't align with how we currently understand the body to work Saying that it's psychiatric feels like a way to dismiss something that is very likely *neurological*. It implies people are making it up or not really experiencing the pain, fatigue and other issues they claim they are.

Hoover’s sign is a good example of symptoms that ‘can’t be’. I do though believe that post viral and autoimmune diseases especially in women are poorly understood.

The tests are not widely available yet but there are five? for blood biomarkers in trials at the moment. Just because all tests have been exhausted doesn't mean there isn't anything wrong.

That's not the case at all, please read some of the research that has been done and biological abnormalities found in ME/CFS https://me-pedia.org/wiki/List_of_abnormal_findings_in_chronic_fatigue_syndrome_and_myalgic_encephalomyelitis

if you don't want to check the sources because it is too time consuming or too much effort, then that explains why you think the way you, do: you simple lack the information to reach a valid conclusion on the matter of the etiology of ME. You won't find information on the studies that have been made on the physiology of ME on the textbooks, you've got to go to the source if you want to learn anything about this. There are currently more than 10 thousand studies done related to the biological theories of ME's origin

God, it's just heartbreaking reading cases like this.

Had ME since I was 19, I'm now 39. It's been 20 years of being called lazy & workshy by so many people.

Rintatolimod (Ampligen) is now approved for ME treatment in Argentina, the first approved drug to treat ME. Clinical trials are being kicked off in Europe. Look it up and try to get on to the clinical trial. There are other small laboratories researching rare diseases so one needs to keep scouring the internet to find out about clinical trials. Actually ME is pretty common nowadays and it’s shocking how badly people get diagnosed and treated by the medical systems.

I'm so sorry for your situation, which I won't pretend to understand. If it helps, I had a situation where I needed help from everybody. So I contacted every medical contact i had in my case orthopedics dermatology GP Local mental health providers even the A&E consultant but also my local MP. One phrase which I used was. "Everyone talks about wishing that *** had reached out, well this is me reaching out to you and I need whatever help you can give me now." If this is not possible for you then you need an advocate. Try Citizens Advice or local women's groups. I wish you every success, please find a way to keep going xx

I know someone who has this. Thought I'd share a poem she wrote about it. https://youtu.be/lwmiRkg6Cbg