DecodeME - UK ME/CFS DNA study underway

Most MS patients I have met feel that fatigue is a major part of their illness as do patients with rheumatoid arthritis, lyme disease and many others. It is a dreadful, disabling symptom that makes life very difficult.

But it is a symptom that cannot distinguish a disease as it is so widespread. When they invented Chronic Fatigue Syndrome, they did to us what renaming TB as Chronic Cough Syndrome would have done. It is technically true but useless to use for finding what is causing the disease. It also has trivialisation built in as everyone feels fatigue (or coughs) so we get little understanding or sympathy from people who feel they get fatigue but don't give in to it. (read the comments under any article about ME)

If we want to find out what is causing ME or develop a test we need to use people who have a clear case of ME and since the beginning ME has been known to be an abnormal response to exercise.

Many people with ME also have dysautonomia as a major part of it but that is also a symptom shared with other diseases so choosing people for a trial on the basis of it would not be useful.

I am not using my experience to say this, but the knowledge I have from fifty years of reading research papers, the views of experts who treated many patients over the years and hearing from many patients.

For myself, I definitely have ME and was diagnosed by hospiral consultant in 1983 but it is possible that my severer disabilities are caused by another disease as I have always had many neurological problems that do not seem to be very typical, though some people on the forums have shared them. In any case, saying that ME is a disease with an abnormal response to exercise has nothing to do with my own experience of fatigue.

 

Trial By Error: Excellent News Coverage of UK Genetics Study in The Times

https://www.virology.ws/2020/07/08/...s-coverage-of-uk-genetics-study-in-the-times/

 

Great article. Just noticed small error: under heading 'Rechristening ME' it says "myalgic encephalomyelitis—what is was called" instead of "what it was called".

 

Assume someone has commended Tom Whipple and the Times for this coverage? I’m not on Twitter.

 

OK, but consider that the three main criteria used for diagnosis are fatigue, PEM and sleep disruption. Let's assume a 1-10 symptom severity scale with 10 being the worst. Which person has the truest disease--Person A who is fatigue 10, PEM 10 and sleep 10 or person B who is fatigue 1, PEM 10 and sleep 1? I think you would advocate for Person B? All I am saying is that for this study, with huge sample size, let's try to include everybody, but also try to score these symptoms on the questionnaire. It could turn out that person A and Person B have a different genetic basis for their disease, which would be be helpful for all, no?

 

I don't think the notion of "truest disease" is especially relevant here. If that was already known then a study such as this would likely be redundant. It is more about identifying a "symptom catchment envelope", in order to capture a fairly wide spread of symptoms and symptom severity mixes. I would think the questionnaire will be analysed to include pwME all around the edges of such an envelope, as well as within it. So including people with a fairly wide variety of symptom severity mixes, as well as a fairly wide variety of symptoms per se. So long as each individual meets a valid diagnosis of ME/CFS, then they should be allowed to participate. Providing they meet the other criteria of course.

 

Jaybee00 said

You misunderstand me. As long as a person has the abnormal reaction to exertion which is the cardinal symptom of ME and not simply the feeling bad after exercise which is better termed postexertional fatigue than malaise, it does not matter what other symptoms they have. They do not even have to be very bad after exercise or limited to a certain amount of exercise. Behan did a study of athletes who could exercise much less than before but still what many other people with ME could only dream of.

What Barry says sums it up nicely.

The link with exercise makes ME a strange disease in that people with milder illness overall can have worse episodes of PEM than those with more overall disability. I can't walk nowadays but suffer less on the rare occasions I go to a supermarket than when I was walking round with 3 kids and carrying heavy bags. It left me very sick and in horrendous pain but we had to eat.

 

This confirms that my daughter will likely not be eligible for the study then, as her CPET results in October showed that she now doesn’t deteriorate after exertion, thus no longer has PEM. Technically, she no longer has ME and is in remission. Had she not taken the exercise test though, we’d be none the wiser and would still believe she met the criteria for having ME. Particularly as the reality of day to day life hasn’t changed at all since then and it’s still going to take her a period of years to fully recover her functioning capacity.

Such a knotty issue!

Moderator note: A number of posts continuing this discussion (on how useful 2xCPET is as a measure of PEM, the characteristics of a good test of PEM and ME/CFS, handwriting quality as an indicator of PEM) have been moved to
https://www.s4me.info/threads/defining-and-measuring-post-exertional-malaise-a-discussion.15783/

 

Maybe she didn't deteriorate on the second CPET because the dose of exertion wasn't enough. If she has been pacing well and isn't severely ill that could be plausible in my experience.

Moving on to the topic of true ME. If we assume that the situation is one where Ramsay's disease is often confused with several other similar diseases, then it would actually be a good idea to study all of these diseases together in order to find similarities and differences. Knowing what disease can look like Ramsay's disease but is actually different at biological level would be useful for those with Ramsay's disease as well.

 

https://twitter.com/user/status/1282693470952607744

 

A possible concern I have regarding PEM "entry criteria" for this study, because I note that for some a significant delay before the onset of PEM is considered prerequisite. But for my wife, although there is sometimes a delay involved, there is not always.

By way of example. Earlier this morning my wife was out in the garden tidying up the borders - gardening is one of her passions. She effectively paces as she goes, working at a rate she can manage to sustain for a while. Then she came indoors because she knew she needed to stop. At that point she wasn't simply shattered (though of course she was), but feeling really ill along with it, as everyone here knows only too well, totally done for. But there was no delay, and it was the onset of it which meant my wife knew she needed to stop and come indoors. This then persisted for quite some while. Given the symptoms and the fact it is brought on by exertion, I've no doubt at all it counts as PEM, delay or no delay. Now however, after a few hours, she is through that bit and not feeling so awful, and moving about again - for which she knows she will pay again.

But other times she might do something more than she should, and it can be the next day before it really hits her, and then it might last for days.

 

I don't understand the issue - you indicate that your wife is affected by PEM, so she can clearly answer the section of the questionnaire that asks about PEM by confirming that she gets it.

If you mean that some patients who are less knowledgeable about their own condition may struggle to identify if they suffer PEM or not, we are aware of that and hope to mitigate that as much as possible.

If you are suggesting that the delay commonly associated with PEM shouldn't be, then that is something that we won't tackle with the study and is better discussed on another thread.

 

But I've not seen the questionnaire yet, so I don't know if it will ask about delays before onset, nor if such delays would be used to ascertain if it was deemed 'real' PEM or not.

And no, delay often is a very significant factor and should not be ignored, but just not a go/no-go decider.

 

Code:

https://www.facebook.com/CarolMonaghanMP/posts/2844243609036150

 

Great to see the continued support of Carol Monaghan for PwME! She's great.

Any updates on sign-ups, @Andy? Are they continuing to come in?

 

I believe there will be some official posts about this soon, but unofficially we now have 18,805 people that are based in the UK and have indicated that they want to take part, so that's an additional 2,273 potential participants. I don't have numbers on other metrics like total sign-ups at this moment but at a guess we might be pushing 25k for those.