Investigation of remissions

mariovitali

mariovitali

Senior Member (Voting Rights)
Dear All,


I am trying to identify as to whether a mechanism / methodology exists for investigating the validity of remissions of individuals with ME/CFS, tagging @ME/CFS Science Blog , @Trish and @Andy .

I now have two individuals with whom I am in contact who are in remission from ME/CFS symptoms.


Case 1 : A woman with ME/CFS + Fibromyalgia and symptoms of spastic paraplegia (she has a confirmed mutation on gene ALDH18A1).

Relevant mention on ALDH18A1 from @forestglip : https://www.s4me.info/threads/neuro...s-2025-lidbury-et-al.44671/page-3#post-627425


Case 2 : A man having ME/CFS which resolved with exclusion of SCFAs from his diet and using Medium Chain Triglycerides (MCTs) instead. He posted about his remission on Healthrising forums.


Both of these patients are ready to discuss with any patient organisation and/or researchers.

I strongly believe that these individuals should present their cases in a systematic way however I feel that no such way exists. I would appreciate your comments on how we should proceed with similar remission cases.
 
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I have no advice to give except to be very wary of attributing remission to anything specific, since people's lives are complicated, and we are plagued with people claiming they have cured their ME/CFS with brain training, LP, ear seeds, spinach, radical resting, cold bathing, and any number of supplements, diets and drugs.
 
Given the high rates of misdiagnosis (potentially as high as 40% both false positives and false negatives) we need a way to confirm the original ME/CFS diagnosis and a clear description of pre remission symptoms to know which of the various diagnostic criteria the person originally met.

Of particular interest is the timing post onset, given the current lack of clarity in distinguishing ME/CFS from post viral fatigue in the earlier stages. Post viral fatigue being believed to be self limiting, remitting after between six months and two years.

As much as possible we could do with a clear description of the progress of symptoms and severity given we don’t have good descriptions of the course of the recognised sub group of relapsing and remitting ME/CFS.

Though it is not clear how reliable the figures are, the best current estimate is that 6% of people with ME/CFS recover or achieve full remission. This 6% over whole populations will mean there are sizeable numbers of people who may be described as recovered or in remission. Given, particularly in the first few years, many people report trying any and every serious and weird and wonderful interventions, it is likely that many of these 6%, who may have recovered whatever they did, will report a large range of interventions associated with their recovery/remission.

Consequently any anecdotal recovery reports linking recovery to a specific intervention should be taken with a large pinch of salt. Association doesn’t necessitate causality, and even if there is causal relationship, there is still uncertainty about the direction of that causation. It is possible that an individual was already improving so had the energy to commit to a new or seemingly promising intervention, and as improvement continues they double down on it reinforcing a mistaken belief that that intervention is the cause of that improvement.

A good example of this is Prof Paul Gardener’s evangelical belief that positive thinking and exercise lead to recovery from his self diagnosed Covid triggered ME/CFS. His social media running commentary indicates he was engaging with quite vigorous exercise some time before his road to Damascus realisation that all he needed to was change his mind set, following his phone call to a Norwegian Lightening Process practitioner. Consequently it is equally probable or even more likely that he was already well into recovery/remission before he started doubling down on positive thinking and exercise as rehabilitation. Indeed we must ask if it was that ongoing spontaneous improvement that made his increasing physical exertion possible rather than the reverse?

Despite the ever increasing number of articles and talks, Paul Garner’s reported recovery from ME/CFS type Long Covid is an example of how not to report a single case study. We have no independent verification of his initial diagnosis, no clear time line of his activity level increases and any other interventions, except what can be gleaned from his social media, and subsequent changing reports.

I believe reports of recovery/remission are very interesting and would love to see examination of any physiological differences between recover and unrecovered patients. Certainly any one advocating potentially harmful interventions on the bases of recovery anecdotes needs to be able to say who might be helped before advocating anyone try it. We are currently seeing BPS advocates of exercise and increasing activity levels using such anecdotes to argue for its universal use without any evidence to say why their success stories differ from the majority worsened by this approach. Similarly advocates of the Lightening Process are desperate to peddle recovery stories whilst suppressing accounts of harm. Unfortunately we equally see such potential harms with biomedical interventions based on a small number of case studies rather than well conducted trials.

Also there is the issue of are we seeing recovery or remission in these cases? Does the individual still have any persistent symptoms, how likely are any subsequent relapses? Further anecdotes of people who believed themselves to be recovered subsequently experiencing major relapse are readily available.

For what it is worth here is my personal ‘recovery’ story and subsequent relapse. My initial trigger was glandular fever and my ME/CFS forced me to go half time at work and cut down on many other activities. Over some three or four years I gradually improved to the point that I believed myself recovered. While I was recovering I was on an exclusion diet and various vitamin supplements, I was having shiatsu massage, undertaking nondirective counselling and took on a house with a large garden. In retrospect I did have some persisting symptoms, but wanted to believe I had mastered the condition. If had wanted I could have attributed this improvement to any one of the listed items, but the diet changes were the only one that seem to me likely to be contributory. However I subsequently discovered I had acquired food intolerances and was liable to B12 deficiency, so the diet changes were not acting on the underlying ME just eliminating the adverse effects of the food intolerances and the vitamin deficiency.

After another three or four years I developed a bad dose of seasonal flue and my ME reasserted itself with a vengeance; I had not recovered but was just in remission. In the subsequence decades I have experienced further relapses and remissions, though each relapse being worse and each remission slower and to a lower level of functioning than the previous. This has given me an overall worsening trend.

[edited to correct some typos]
 
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Trish said:
I have no advice to give except to be very wary of attributing remission to anything specific, since people's lives are complicated, and we are plagued with people claiming they have cured their ME/CFS with brain training, LP, ear seeds, spinach, radical resting, cold bathing, and any number of supplements, diets and drugs.
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I largely agree but I would like to say something about the "supplements" part of your answer @Trish

Do TUDCA, Phosphatidylcholine, Mixed tocopherols and tocotrienols (=Vitamin E), Ubiquinol, LOLA (L-Aspartate, L-Ornithine) fall into the category of supplements ?

-TUDCA lowers ER Stress (ER Stress was recently identified as a potential cause of PEM)
-Phosphatidylcholine is a key substance necessary for cell membrane integrity (@TamaraRC ). Phospholipids have been found to be lower persistently in ME/CFS patients.
-Mixed tocopherols and tocotrienols mitigate lipid peroxidation
- LOLA can potentially be used for elevated ammonia. We do have some evidence of Urea cycle dysfunction in some patients (dysfunction which can increase ammonia levels, a toxic substance)

I provided two specific examples of -potential- remissions (these need to be investigated as to whether they hold) I believe it is going to be a big mistake to dismiss such cases without further investigating.
 
I assume it will be very difficult if not impossible to establish causation here. And without a thorough clinical evaluation by knowledgable physicians, we can’t be sure about their diagnosis either, especially if they symptoms might have been caused by something other than whatever ME/CFS is.
 
Utsikt said:
I assume it will be very difficult if not impossible to establish causation here. And without a thorough clinical evaluation by knowledgable physicians, we can’t be sure about their diagnosis either, especially if they symptoms might have been caused by something other than whatever ME/CFS is.
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I guess that "Investigation" here would include making sure as to whether a) These patients have indeed ME/CFS b) whether "remission" is indeed remission and c) whether these symptoms can be attributed to something else.

From what I understand so far, there is no research group or patient organisation that would systematically make such investigation(s)
 
mariovitali said:
I guess that "Investigation" here would include making sure as to whether a) These patients have indeed ME/CFS b) whether "remission" is indeed remission and c) whether these symptoms can be attributed to something else.

From what I understand so far, there is no research group or patient organisation that would systematically make such investigation(s)
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Mostly because it would be very very resource intensive to do. And I’m not sure if there is any value to doing it retrospectively if they are already in remission, and it wouldn’t be ethical to attempt to put them back in a disease state because we have no idea if doing so would be reversible.
 
As well as really carefully tracking and recording data before during and after trying a particular treatment, I think other changes the person is making and has made recently need to be taken into account in making claims. I make no comment specifically about the two cases described, as I know nothing other than the brief note in the opening post.

There was the so called 'study' recently where a pharmacist did a big survey on Twitter and people, includng me, filled in the very lengthy questionnaire she produced. The 'results' were uninterpretable, as there is no way of knowing important things like diagnosis, what else they were trying, how long the improvement lasted. Also it was done at a time when there was a lot of social media egging people on to try all sorts of things, and creating a buzz around them.
Patient-Reported Treatment Outcomes in ME/CFS and Long COVID, 2024, Eckey, Davis, Xiao+
 
mariovitali said:
I now have two individuals with whom I am in contact who are in remission from ME/CFS symptoms.
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Who claim to be in remission. Your question is how to verify such claims, so you should be careful to use proper terms to distinguish between unproven claims and actual proven remissions. Until we have a reliable diagnostic test for ME, it's not really possible to verify remissions.
 
I experienced near to full remission for 15 to 20 years due to no reason at all. I didn't alter my lifestyle, I was under 35.

At the time I'd have said full remission after EBV Glandular fever diagnosed by a GP as PVF episodes. Looking back with hindsight some of what I thought were bugs were probably pem malaise, so probably I had instead extremely mild undiagnosable ME/CFS with very infrequent extremely mild pem episodes ("recurring tonsillitis") but I was capable of 5 back to back days of 15-19km hiking before pem hit.

Just thought it might be another interesting case for comparison.

Can ME/CFS be so mild it gets confused as being just a normal low energy person?
 
Kiristar said:
Can ME/CFS be so mild it gets confused as being just a normal low energy person?
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This is something we have discussed in other contexts, such as people with gradual onset. The pedantic answer is that generally an ME/CFS [diagnosis] requires a 50% loss of function, so such pre or post states are not technically ME, but I personally find it reasonable to say that a not total remission or in retrospect with slow onset that we are seeing a very mild form of the disease.

It may be we can not answer this fully until we have a clinically useful diagnostic test,
 
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I too had a remission phase after a few years.
In my initial illness, I still worked full-time and socialised at weekends, would that be 50% less? Probably not, but I was constantly in pain, depressed and off sick, I also quit all outside activities like the gym and studying. I’d collapse after work. I remember missing trains because I was too tired to stand up from the platform to board.
 
mariovitali said:
-TUDCA lowers ER Stress (ER Stress was recently identified as a potential cause of PEM)
-Phosphatidylcholine is a key substance necessary for cell membrane integrity (@TamaraRC ). Phospholipids have been found to be lower persistently in ME/CFS patients.
-Mixed tocopherols and tocotrienols mitigate lipid peroxidation
- LOLA can potentially be used for elevated ammonia. We do have some evidence of Urea cycle dysfunction in some patients (dysfunction which can increase ammonia levels, a toxic substance)
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I've been taking all of these for while expect the last one. I guess I'm ordering LOLA now.
 
Peter T said:
I personally find it reasonable to say that a not total remission or in retrospect with slow onset that we are seeing a very mild form of the disease.
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Yes, me too. I think if I'd had a consultation with a doctor who really knew about ME/CFS I'd have been diagnosable even when I was quite mild.

The pattern was there. The ongoing pacing that was never thought of as such, the PEM mistaken for colds, the periods of cutting back on optional activities until the picture looked distinctly peculiar for a young, fit person. There was a kind of ... caution? ... that you didn't used to see in people until the mindset changes that come with parental or professional responsibilities.

(Life was vastly more carefree for young people then. You could decide to start a record label at the age of 17 and run it from the payphone at the pub next door to your mum's, because nobody ever said you couldn't.)
 
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