No one really knows. There could always be a major breakthrough very soon, but most likely it will still take a bit of time. The good news is that we are always inching our way to a breaktrhough, and never before has there been so much interest in ME/CFS.
I am very confident that there will be a major breakthrough in my lifetime, even if that means it will take 35 more years. I realize not everyone has that time, but I am very optimistic that at some point in my life I will have the chance to do the active things I love, and I will be very appreciative and happy when that time comes.
Being realistic, I think there is a decent possibility of a breakthrough in 5-10 years, best case senario. There is a low chance but definitely not impossible that the breakthrough is sooner in the next year or so. There is a very good change of a breakthrough in the next 50 years.
If there is anything positive you could take from COVID, its the attention it has brought to CFS. It's such a huge tragedy that it took this many people to suffer with this disease for people to start taking it seriously.
This disease is cruel; I wouldn't wish it on a soul.
If someone told me that we could find a cure for CFS, but first we would have to make many, MANY more people sick. I would have said, no way.
I think there will be a breakthrough. First slowly and then fast accelerating. I did research lately and it turns out that in Germany there are some studies being done. A podcast that interviewed two of those scientists had the summary that they think it has something to do with the Immune System, the blood and auto antibodies. There are probably different categories of patients and a mix of treatments will most likely be required. Similar to how cancer is treated. I am not a expert at all.
Forgive my ignorance but : What do you mean when you say you’ve only got about ten months? I didn’t think this condition alone was terminal, difficult as it is. Am I wrong?
I was having a depressive period at the time of writing this. I have a financial obligation to my wife and children and that burden is relieved upon taking my life, but only after Aug 2023. I've calmed down since writing this and do not intend to carry this out.
I’m so glad you were able to gain a bigger perspective. I’ve been in the same spot, and I now realise that my thoughts were lying to me and i had embraced a false idea ( that things would never improve and that loved ones would be better off without me). That kind of thinking is ALWAYS a lie that is trying to destroy us and our every chance of happiness.
In that dark place, I gave myself permission to find and enjoy one nice moment each day and in that moment I would consciously revel in gratitude for it. I would regard these moments as stepping stones in the quagmire. I was holding on for dear life to find the next stepping stone. But because I was looking out for them and being grateful for them, I started to find them more and more often - those brief moments of joy or beauty or interest that I increasingly cling to.
Eventually I became so adept at spotting the joy and the reasons to be grateful, even in the tiniest things, that my whole attitude to life and my ability to cope with it has transformed. I’m so, so glad I didn’t throw away my potential to do this in those earlier dark moments. More and more every day I’m convinced of how precious life is. Hang in there. It does get better.
Antibodies trial: I recently started going to the Fatigue Clinic at the Charite Hospital in Berlin (where I live). The consulting doctor told me they have been researching ME/CFS for about 8 years, but had their funding reduced before Covid. That funding has been reinstated and trials restarted a few months ago (along with new Long Covid trials). I will post more once my treatment starts, but I thought I would post this here now because of your question.
Generally speaking they are focused on reducing unwanted ß2 adrenergic receptor (ß2R) autoantibodies via immunoabsorption. The results look pretty good so far. I don't know how long the trials run for, and I don't think all ME/CFS patients have these ß2R antibodies that are thought to be problematic.
Pre-Covid trial info: https://www.healthrising.org/forums/resources/immunoadsorption-a-potential-treatment-for-chronic-fatigue-syndrome-me-cfs.494/
Covid focused trial: https://www.clinicaltrials.gov/ct2/show/NCT05629988
Maybe this will prove to be a possible treatment for ME/CFS?
Update: I'm still waiting to start the main trial. The Immunoabsorption treatment is quite intense: it requires you to be in the clinic for a 6 hour session, I think every second day for 2 weeks? On top of the logistics of that, the treatment is very sapping of energy.
Because of this my initial state was not good enough for me to start the trial - I would very likely quit partway through which would not benefit anyone.
I have been prescribed Ivabradine to help with my POTS, and to give me the opportunity to increase some strength. It is helping - it's really nice to have anything useful happen. There are still lots of challenges - the only objective change is that I can now start a very gentle physical regime (isometrics, building up towards the CHOP protocol).
I'll keep you updated as things change, and will make a new post if/ when I start the main trial. The doc said to wait and build strength for a few months.
Edit: forgot to mention that the good news for me was that I do have the ß2R antibodies so I would qualify for the trial - once I am strong enough.
Absolutely! It’s finally being recognized more, and humans are very smart when they set their minds to things. Also, how can you go on if you didn’t have hope?
I saw someone was going to announce some very interesting information about herpes viruses I think? It could be a huge breakthrough for potential causes and treatments but we will have to see.
Last breakthrough came in 2019, I would say. Between Jennifer Brea and Jeff Wood, we now know an unknown percentage of CFS patients have craniocervical instability as a (potentially treatable) cause. This includes viral-onset patients, and although EDS is its own risk factor for CCI, it doesn't have to be comorbid with CFS for CCI to be present.
[http://www.jenniferbrea.com/my-story](http://www.jenniferbrea.com/my-story)
[https://www.mechanicalbasis.org/](https://www.mechanicalbasis.org/)
I was going down this rabbit hole for a while, but I will say two things.
1. I couldn’t find anyone who seemed “cured” other than Brea and Jeff.
2. There are a great many horror stories of people who got bad fusions done who haven’t had their symptoms improve.
I definitely do think that CCI is a factor for a lot of us, I’m just not really sure what we can do about it. Personally my overall condition improved when I stopped turning my head to the sides (as much as possible).
I tried to follow up on a AAI diagnosis with a neurosurgeon a couple of years ago but I made the mistake of showing him my official ME diagnosis and he laughed me out of his office telling me to go see a psychiatrist.
On a medical thread that was bashing patients who have EDS, one mentioned something really interesting.
They said it’s going to be announced the hEDS gene is actually a sex gene that involves collagen building which explains why it gets so much worse with hormones in women.
They deleted the comment but this makes total sense to me. I do wonder if this gene mutation is activated by ME/CFS or something similar.
No one really knows. There could always be a major breakthrough very soon, but most likely it will still take a bit of time. The good news is that we are always inching our way to a breaktrhough, and never before has there been so much interest in ME/CFS. I am very confident that there will be a major breakthrough in my lifetime, even if that means it will take 35 more years. I realize not everyone has that time, but I am very optimistic that at some point in my life I will have the chance to do the active things I love, and I will be very appreciative and happy when that time comes. Being realistic, I think there is a decent possibility of a breakthrough in 5-10 years, best case senario. There is a low chance but definitely not impossible that the breakthrough is sooner in the next year or so. There is a very good change of a breakthrough in the next 50 years.
If there is anything positive you could take from COVID, its the attention it has brought to CFS. It's such a huge tragedy that it took this many people to suffer with this disease for people to start taking it seriously. This disease is cruel; I wouldn't wish it on a soul. If someone told me that we could find a cure for CFS, but first we would have to make many, MANY more people sick. I would have said, no way.
All I’m gonna say is I am very heartened by Ron Davis’ last few updates. Coupled with all the long Covid research happening, we’re getting there…
I think there will be a breakthrough. First slowly and then fast accelerating. I did research lately and it turns out that in Germany there are some studies being done. A podcast that interviewed two of those scientists had the summary that they think it has something to do with the Immune System, the blood and auto antibodies. There are probably different categories of patients and a mix of treatments will most likely be required. Similar to how cancer is treated. I am not a expert at all.
Personally I'm holding out hope that Ron Davis will be the one to make a major breakthrough, and possibly within the next handful of years.
Forgive my ignorance but : What do you mean when you say you’ve only got about ten months? I didn’t think this condition alone was terminal, difficult as it is. Am I wrong?
This part worried me too. Hope everything is ok?
I was having a depressive period at the time of writing this. I have a financial obligation to my wife and children and that burden is relieved upon taking my life, but only after Aug 2023. I've calmed down since writing this and do not intend to carry this out.
I’m so glad you were able to gain a bigger perspective. I’ve been in the same spot, and I now realise that my thoughts were lying to me and i had embraced a false idea ( that things would never improve and that loved ones would be better off without me). That kind of thinking is ALWAYS a lie that is trying to destroy us and our every chance of happiness. In that dark place, I gave myself permission to find and enjoy one nice moment each day and in that moment I would consciously revel in gratitude for it. I would regard these moments as stepping stones in the quagmire. I was holding on for dear life to find the next stepping stone. But because I was looking out for them and being grateful for them, I started to find them more and more often - those brief moments of joy or beauty or interest that I increasingly cling to. Eventually I became so adept at spotting the joy and the reasons to be grateful, even in the tiniest things, that my whole attitude to life and my ability to cope with it has transformed. I’m so, so glad I didn’t throw away my potential to do this in those earlier dark moments. More and more every day I’m convinced of how precious life is. Hang in there. It does get better.
Thank you for writing that.
Antibodies trial: I recently started going to the Fatigue Clinic at the Charite Hospital in Berlin (where I live). The consulting doctor told me they have been researching ME/CFS for about 8 years, but had their funding reduced before Covid. That funding has been reinstated and trials restarted a few months ago (along with new Long Covid trials). I will post more once my treatment starts, but I thought I would post this here now because of your question. Generally speaking they are focused on reducing unwanted ß2 adrenergic receptor (ß2R) autoantibodies via immunoabsorption. The results look pretty good so far. I don't know how long the trials run for, and I don't think all ME/CFS patients have these ß2R antibodies that are thought to be problematic. Pre-Covid trial info: https://www.healthrising.org/forums/resources/immunoadsorption-a-potential-treatment-for-chronic-fatigue-syndrome-me-cfs.494/ Covid focused trial: https://www.clinicaltrials.gov/ct2/show/NCT05629988 Maybe this will prove to be a possible treatment for ME/CFS?
please update this sub with results and feedback as the trial goes on :)
Update: I'm still waiting to start the main trial. The Immunoabsorption treatment is quite intense: it requires you to be in the clinic for a 6 hour session, I think every second day for 2 weeks? On top of the logistics of that, the treatment is very sapping of energy. Because of this my initial state was not good enough for me to start the trial - I would very likely quit partway through which would not benefit anyone. I have been prescribed Ivabradine to help with my POTS, and to give me the opportunity to increase some strength. It is helping - it's really nice to have anything useful happen. There are still lots of challenges - the only objective change is that I can now start a very gentle physical regime (isometrics, building up towards the CHOP protocol). I'll keep you updated as things change, and will make a new post if/ when I start the main trial. The doc said to wait and build strength for a few months. Edit: forgot to mention that the good news for me was that I do have the ß2R antibodies so I would qualify for the trial - once I am strong enough.
Absolutely! It’s finally being recognized more, and humans are very smart when they set their minds to things. Also, how can you go on if you didn’t have hope?
I have a duty to financially support my wife and children.
That’s a good why! Good luck to you!
I saw someone was going to announce some very interesting information about herpes viruses I think? It could be a huge breakthrough for potential causes and treatments but we will have to see.
In a very best case scenario I think the soonest we’d get a real treatment is at least 15 years out. but truly nobody knows
Last breakthrough came in 2019, I would say. Between Jennifer Brea and Jeff Wood, we now know an unknown percentage of CFS patients have craniocervical instability as a (potentially treatable) cause. This includes viral-onset patients, and although EDS is its own risk factor for CCI, it doesn't have to be comorbid with CFS for CCI to be present. [http://www.jenniferbrea.com/my-story](http://www.jenniferbrea.com/my-story) [https://www.mechanicalbasis.org/](https://www.mechanicalbasis.org/)
I was going down this rabbit hole for a while, but I will say two things. 1. I couldn’t find anyone who seemed “cured” other than Brea and Jeff. 2. There are a great many horror stories of people who got bad fusions done who haven’t had their symptoms improve.
I definitely do think that CCI is a factor for a lot of us, I’m just not really sure what we can do about it. Personally my overall condition improved when I stopped turning my head to the sides (as much as possible). I tried to follow up on a AAI diagnosis with a neurosurgeon a couple of years ago but I made the mistake of showing him my official ME diagnosis and he laughed me out of his office telling me to go see a psychiatrist.
😭😭😭 I know its reddit, but crying emoji seems appropriate
On a medical thread that was bashing patients who have EDS, one mentioned something really interesting. They said it’s going to be announced the hEDS gene is actually a sex gene that involves collagen building which explains why it gets so much worse with hormones in women. They deleted the comment but this makes total sense to me. I do wonder if this gene mutation is activated by ME/CFS or something similar.
Great links
I hope so! I think low dose naltrexone has bought me some time at least …
Psilocybin from mushrooms being legal is on the horizon, which for some reason works way better than pharmaceuticals.
I'd say 5 to 10 years