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Huge thanks to everyone who took part in the poll and shared it on social media. In January, our small group of research-oriented ME/CFS patients including Simon McGrath, Graham McPhee, Carly Maryhew and others, asked our fellow ME/CFS patients to complete an important poll. The poll related to...

Broadly is a deliberately-generous term. So if you think it’s not quite right, but generally covers it, that’s broadly and a Yes. If you think not really, or definitely not, then it’s a No.

We made it to 760 responses, which is an incredible results. Thanks to everyone who completed the survey or shared. Paul closes tomorrow, early, at 2 PM GMT. This is the link if anyone wants to share. https://www.surveymonkey.com/r/7VXQSL2

It is difficult, but having data on how patients view different proposed descriptions will help find the most appropriate solution.

690 now, nice work! Thanks to everyone who has prmoted this

@Tom Kindlon point that fitness was measured post infection is lethal to the argument: you can’t have an (unfixed) risk factor that occurs/is measured after the event. Lower physical fitness is more likely to be linked to the severity of the acute infection, putting things in a very different...

Thanks for Reddit share! We are now t 360 responses. 500 would be really good. Please keep promoting the survey - the more patients that reply, the more representative the survey will be, and the more impact it will have in the NIH/CDC consultation...

I’m sorry this wasn’t clear. You only need to have a single symptom moderately and at least half of the time to qualify for post exertional malaise. However, a big problem with this is that some of the symptoms just seem to be about fatigue, And not linked to post exertional malaise, so someone...

The poll is now live, read all about it here In the end we stripped it down to the bare bones to make it accessible to as wide an audience as possible, and so it doesn't reflect the complexity of the debate here.

Now on Facebook And twitter

@Leonard Jason Thanks again to you and Madison Sunnquist for taking the trouble to read so many comments and for responding. It seems to me you made two central points: (a) Even though patients said the questions don’t reflect their experiences of PEM, you still found a very high rate of PEM...

I hoped I'd flagged up the first point in my initial thread post. I understand that overwork word normally stop any physician going down the route of considering ME until it had been addressed. As for pacing, certainly the 2-step helps, but my concern (and that of others) was that the patient...

That’s a good point. However, I think some caution is needed. Bruce Carruthers, who came up with the Canadian consensus criteria, had what I thought was a great definition of PEM as a symptom flare, where the symptoms were consistent between flares for each individual patient, but there was a...

That’s an interesting point, but I think it’s dangerous to assume that PEM is indeed unique to us. What it is, I’m sure, is totally unlike anything healthy people experience, even deconditioned ones. I know some people with chronic pain who experience something that sounds very much like PEM and...

Thanks to everyone who has contributed and I'm sorry there was so much info to wade through. So far there has been a strong positive response that the proposed PEM questionnaire is not suitable, with no dissenters - and forums are not noted for people holding back. So it seems this is an issue...

Consultation: Anyone can write in, anytime – up til Jan 31st deadline. Should we combine to offer comments on PEM? Anyone at S4ME have an opinion on this? @Andy @Valentijn. I guess it depends on how the discussion goes. “We are in the process of finalizing these documents and would like to...

Background information that many will want to skip J Various extracts from the proposals that highlight what a thorough job the PEM subgroup has done, and illustrates some of the issues covered in my first post. PEM will be an essential part of the case definition of ME/CFS: The “PEM...

The way the symptoms are scored might give misleading results My other big concern with the questionnaire, which again relates to its accuracy, is about how PEM is scored. I think we need to score in a way that reflects how patients try very hard to avoid PEM. Here’s the questioin “For the...

The NIH/CDC are deciding on the “common data elements“, CDE, that must be collected in all studies they fund. And they’ve asked for patient comments on the draft proposals by 31 January. Perhaps the most important of the CDEs covers PEM, as the cardinal symptom of the illness. The PEM subgroup...

Nailling this down is perhaps the greatest challenge, and the most important area for patient input, in my view. I think there is much to do here. Personally, I’d like to see fatigability considered alongside fatigue: Often it’s not just the fatigue level itself, but the speed with which...