Discussion in 'BioMedical ME/CFS News' started by NelliePledge, Jun 23, 2020.
Assume someone has commended Tom Whipple and the Times for this coverage? I’m not on Twitter.
Sean O'Neil wrote most of it. People have thanked him 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.
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
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.
Moderator note: Please remember this thread is about the DecodeME study. Some posts have been moved to this thread:
Defining and Measuring Post-Exertional Malaise - a discussion
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.
I have replied on the PEM thread here.
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.
Can people with post covid 19 illness that meets the relevant diagnostic criteria participate?
Maybe this question and its answer needs to be on the FAQs page, @Andy - I imagine a lot of people will be wondering that now.
Have just remembered – ! – that my local MP has been appointed the shadow minister for health and social care. He has a good record for engaging with constituents, so I could email him with information about the study in the hope that he can help with publicising it via (for instance) NHS services.
I'd need a bit of help, though. One thing that would be useful is a simple timeline, which includes plans/timings for getting NHS ME clinics and GP practices involved.
Also happy to hold back for the time being, if people think it would be worth waiting until we get to the next phase of the project.
If they've received a clinician's diagnosis of ME then sure.
Separate names with a comma.