Is there anything that’s actually promising?

[wabi-sabi]

And @Martin aka paused||M.E. and @The Bard, we're counting on you two to get ready to help us sue the pants off of the Simon Wesleys and Trudy Chalders of the world once that discovery is made

Ooh yes! Sign me up for the lawsuit now!

 

[borko2100]

There are some promising new theories (see complex v inefficiency, sodium / potassium disbalance inside the cell, etc.) with some positive studies behind them, unfortunately they have not been replicated by other researchers. At this point it is a waiting game to see if replication is succesful or not. I wouldn't hold my breath though.

In any case, IMO the root of the problem is at a sub-cellular level. Ie. something is wrong with how energy is produced. When we push too hard, this energy deficiency becomes even worse leading to PEM. I think this is why they can't find anything wrong with us as they are looking in the wrong place (ie. the bloodstream) when the problem can only be seen when you look inside the cell, which is very difficult to do.

 

[livinglighter]

I had a consultation with a encephalitis neuroimmunologist. Unfortunately, he said he couldn't help as there is no cure.

He explained PEM to be a malfunction with the way reactionary chains are communicating with each other after exertion.

 

[Boba]

I had a consultation with a encephalitis neuroimmunologist. Unfortunately, he said he couldn't help as there is no cure.

He explained PEM to be a malfunction with the way reactionary chains are communicating with each other after exertion.

That sounds really promising. Sorry, I have a pretty hopeless day.

 

[livinglighter]

Personally, I think the more research that goes into the immune underlying causes of this condition the closer we may get to worthwhile treatments.

There is a lot of immunology research into Long COVID which I am still hoping will be beneficial to us. Not all Long COVID patients have organ damage.

 

[Martin aka paused||M.E.]

I think the more research that goes into the immune underlying causes of this condition the closer we may get to worthwhile treatments.

+1

 

[perrier]

I had a consultation with a encephalitis neuroimmunologist. Unfortunately, he said he couldn't help as there is no cure.

He explained PEM to be a malfunction with the way reactionary chains are communicating with each other after exertion.

I’d love to have heard his analysis in more detail? What evidence did he have? Did he in your view understand ME?

 

[livinglighter]

I’d love to have heard his analysis in more detail? What evidence did he have? Did he in your view understand ME?

He wasn't knowledgeable in ME, he admitted to having limited awareness. The consultation wasn’t helpful, aside from his explanation of PEM and cognitive dysfunction - which again he explained as being an issue with the way the brain functions. I wasn't after explanations, I wanted tests to show abnormalities.

Honestly, that was it. If it was anything worthwhile, I would have posted what happened.

I ended up having a consultation with another one - but again nothing much useful as I didn't test positive for autoimmune encephalitis.....

I’m going to take a look at the summary, as I got it late last week to see what the recommendations are.

 

[bensmith]

https://www.research-in-germany.org...nts_benefit_from_drug_against_Long_COVID.html

not sure if this is hopeful, i’m steamed they wont allow the public to try the med off label. But they say they will tru and get studies this year or next.

 

[livinglighter]

I have experienced remission which to me is a sign that the condition can be treated.

ME has been likened to RRMS. Without awareness I actually took a MS protocol designed by Dr Coimbra using high dose vitamin D. Basically, back in 2019 my GP done some bloods, Vit D came back very low and I was prescribed prescription only deficiency capsules. Most likely due to my cognitive impairments, I read the label wrong and instead of taking 20,000 IU twice a week, I took 20,000 IU twice a day. I think about 3 days in I noticed I wasn't crashing each day and I had a normal sustained energy throughout the day like pre-illness.

As time went on I lost a lot of the weight that I had put on and started going to the gym. I thought I had been cured. It took a week for the prescription to run out, unfortunately I wasn't allowed any more as the GP said I had taken too many. I think the remission lasted for about 8 months or so.

I bought some other high dose vit D tablets from Amazon but haven't had any results (as it was accidental, I’m not sure how much I need to take, so have infrequently been trying different amounts).

Now I have a ME/CFS specialist I'm going to try obtaining the same prescription-only capsules. I have done a post on the ones I used. Once I attempt the actual protocol if I get any results I will post it here.

Here is some info on the protocol

https://www.grassrootshealth.net/blog/overcoming-ms-with-vitamin-d/

(EDIT - I took 20,000 twice a day)

 

[Wishful]

Personally, I think the more research that goes into the immune underlying causes of this condition the closer we may get to worthwhile treatments.

Immune dysfunction might not be the root cause of ME, but I do believe that it's part of the problem, so it's definitely worth studying. Fixing immune dysfunction might be easier than fixing some other problem inside cells inside the brain.

 

[borko2100]

I have experienced remission which to me is a sign that the condition can be treated.

ME has been likened to RRMS. Without awareness I actually took a MS protocol designed by Dr Coimbra using high dose vitamin D. Basically, back in 2019 my GP done some bloods, Vit D came back very low and I was prescribed prescription only deficiency capsules. Most likely due to my cognitive impairments, I read the label wrong and instead of taking 20,000 IU twice a week, I took 20,000 IU twice a day. I think about 3 days in I noticed I wasn't crashing each day and I had a normal sustained energy throughout the day like pre-illness.

As time went on I lost a lot of the weight that I had put on and started going to the gym. I thought I had been cured. It took a week for the prescription to run out, unfortunately I wasn't allowed any more as the GP said I had taken too many. I think the remission lasted for about 8 months or so.

I bought some other high dose vit D tablets from Amazon but haven't had any results (as it was accidental, I’m not sure how much I need to take, so have infrequently been trying different amounts).

Now I have a ME/CFS specialist I'm going to try obtaining the same prescription-only capsules. I have done a post on the ones I used. Once I attempt the actual protocol if I get any results I will post it here.

Here is some info on the protocol

https://www.grassrootshealth.net/blog/overcoming-ms-with-vitamin-d/

(EDIT - I took 20,000 twice a day)

I have tried high dose vit d. a few times, not as high as you but high, maybe 5k to 10k units / day. I think it was beneficial, but def. not curative. I also benefit from a lot of sun exposure (which obviously produces vit d.). I think vit d. is very important and can help a lot of people, but I doubt that it can lead to a cure or a remission. IMO it is quite likely that your remission might have been a coincidence.

 

[borko2100]

Immune dysfunction might not be the root cause of ME, but I do believe that it's part of the problem, so it's definitely worth studying. Fixing immune dysfunction might be easier than fixing some other problem inside cells inside the brain.

If ME is a cellular problem at it's root and affects all cells in the body then immune cells would not be spared, and this would lead to immune dysfunction as well.

Taking into account the vast array of symptoms that people with ME report, it is quite likely that all cells (or most) in the body might indeed be affected. Dysfunctional muscle cells -> rapid fatiguability and inability to exert; dysfunctional nerve cells -> fatigue, cognitive and neuro symptoms, pain; dysfunctional gut cells -> food sensitivities and IBS; dysfunctional immune cells -> immune / flu like symptoms; and the list goes on,

 

[livinglighter]

I have tried high dose vit d. a few times, not as high as you but high, maybe 5k to 10k units / day. I think it was beneficial, but def. not curative. I also benefit from a lot of sun exposure (which obviously produces vit d.). I think vit d. is very important and can help a lot of people, but I doubt that it can lead to a cure or a remission. IMO it is quite likely that your remission might have been a coincidence.

High dose vit D ability to modulate the innate and adaptive immune responses has been studied. 5k - 10k doesn’t appear to be high enough. Seems to be 40,000 IU upwards. Have a look online. Studies suggest It also controls T-lymphocyte function which in ME show disruptions in the way they produce energy. My experience could have been a coincidence, but then I also find it a coincidence that I found research that explains reasons for why I experienced remission.

 

[borko2100]

High dose vit D ability to modulate the innate and adaptive immune responses has been studied. 5k - 10k doesn’t appear to be high enough. Seems to be 40,000 IU upwards. Have a look online. Studies suggest It also controls T-lymphocyte function which in ME show disruptions in the way they produce energy. My experience could have been a coincidence, but then I also find it a coincidence that I found research that explains reasons for why I experienced remission.

I suppose it won't hurt to try something like 20 to 30k iu, even though such a high dose makes me a bit worried about toxicity.

 

[livinglighter]

I suppose it won't hurt to try something like 20 to 30k iu, even though such a high dose makes me a bit worried about toxicity.

It’s recommended that you take the protocol under medical supervision as you do need to check calcium levels, etc.

I wouldn’t attempt it long term without a doctor tbh.

https://www.coimbraprotocol.com/the-protocol-1

There is a lot written about it so it’s worth checking out. Then decide if it’s worth your time or not.

https://www.frontiersin.org/articles/10.3389/fimmu.2021.655739/full

For me, it’s the only thing I’ve stumbled across that has possibly worked, so I’m willing to give it a try properly.

 

[Wishful]

I also benefit from a lot of sun exposure (which obviously produces vit d.). I think vit d. is very important and can help a lot of people, but I doubt that it can lead to a cure or a remission.

It's obviously not a general cure or treatment for ME, since it only helps a few individuals. ME--and the whole human body--is so complex that it's quite reasonable for some treatment, whether it's VitD or cuminaldehyde or maybe even "Purple Dye #7" to change something which changes something else and so on until something changes that reduces a symptom. Given a few million people with their own unique ME responses, it seems reasonable that at least a few people would benefit from VitD, or VitC or B1, B2 or whatever.

 

[Wishful]

Taking into account the vast array of symptoms that people with ME report, it is quite likely that all cells (or most) in the body might indeed be affected.

The wide variety of symptoms from ME could also be from a small number of cells being affected, which in turn cause a wide variety of downstream effects. A fairly tiny part of the brain controls a lot of hormones, which in turn affect a lot of body functions.

In my case, I don't seem to have any symptoms that I can readily attribute to dysfunctional cells outside my brain. My muscle cells seem unaffected. To me it seems like a neuroimmunological disease.

 

[borko2100]

The wide variety of symptoms from ME could also be from a small number of cells being affected, which in turn cause a wide variety of downstream effects. A fairly tiny part of the brain controls a lot of hormones, which in turn affect a lot of body functions.

In my case, I don't seem to have any symptoms that I can readily attribute to dysfunctional cells outside my brain. My muscle cells seem unaffected. To me it seems like a neuroimmunological disease.

For me it's different, I can definately feel my muscle cells are affected, as in they cannot produce enough energy and get fatigued abnormally fast. It really feels like its coming from the muscle not the brain. But then again, its impossible to know for sure, the brain could be fooling me. Maybe both possibilities are true, ie. there are subsets, some being affected only in their brain / cns cells, while others being affected throughout entire body.

 

[Oliver3]

I get really frustrated by the near constant reporting in studies, articles, public awareness campaigns- the endless obsessing on GET and CBT and bogus BRITISH issues that have nothing to do with Science in the United States.

Nothing about this illness is psychosomatic. Endless wasted breath.

I feel like this constant narrative pulls us back constantly.

A stuck record.....

Hey, I'm British, we don't like what's going on too!!