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I agree with Graham that a questionnaire could be useful if the questions are smart enough. You could for example ask: do simple tasks like making the bed or preparing a meal exceed your energy limit, do you have to include extra rest periods to recover from such tasks? For normal people that...

So there's some news from Belgium. The government has extended its ME/CFS-convention until 2020. In parliament our Minister of Health said the assessment report of GET/CBT rehabilitation has shown to be highly successful. Patients however were not allowed to see the report... The new...

I thought ME Action were the ones claiming the 80% figure. It's in the educational video by David Kaufman. Good to check these things. Had a quick look (without reading the full studies) and found these: 2018 Jason study: "The majority of participants (93%) from the qualitative sample reported...

Thanks Tom. Impressive collection of ME images you have there on Pinterest. These seem to be the major obstacles: The pictures have got to be high quality and suitable for news outlets. That often means they have to be taken by a professional photographer or somebody with better equipment...

Thats great! Thanks for responding for ME Association @Russell Fleming ! Other major charities such as Solve ME/CFS and ME action UK have responded that they also have a set of pictures on working on this issue. What do you think of a website where pictures speficially suited for media...

So in the Radio 4 interview Pariante said: And in the BBC Wales interview he claimed: So he is actively promoting the confusion. I don't think this qualifies as a mistake. I think this demonstrates he is deliberately lying to gain personal benefit from it. The fact that the paper only...

Bit confused now. Maybe if I rephrase my argument our differences will become clear. As I see it, the authors used different phrases to describe PEM from different case definition or questionnaires. One phrase that came from the Ramsay’s definition was “Prolonged worsening of symptoms after...

I think the term PEM has shifted from (1) simply being post-exertional malaise as introduced by the Fukuda criteria – something that is reported in many other diseases – to (2) a collection of all the detrimental effects exertion has on the health of ME/CFS patients. Some of these are quite...

They deconstructed each definition into different statements. The one that was taken from the Ramsay definition and that got the highest score was not muscle fatigability but "Prolonged worsening of symptoms after physical activity’. You can see it in table 3. 'Excessive muscle fatigue with...

Merged thread: 'A database/website for ME images' With the recent media attention regarding the Pariante article, @TiredSam brought up the issue of images of ME/CFS. These are mostly yawning models with make up on, not a true reflection of the suffering ME/CFS causes. A lot of people do not...

I disagree. This is mostly about clinical information. There seems to be a large group within the ME/CFS entitiy that reports post-exertional relapses that are quite distinct from most other diseases we know of. So I think researchers just need to pay more attention to what patients are...

Really? Do you have a link for that? I thought he simply analyszed PEM descriptions and argued that PENE failed to include muscle fatigue which is a part of most other PEM descriptions such as his DePaul Post-Exertional Malaise Questionnaire. Personally I see PENE and (post-exertional) muscle...

This is interesting. I think I remember Charles Shepherd saying something similar: that some cfs centres claim to use GET for the record, but actually apply something more akin to pacing.

I personally think that gradually increasing exercise in the expectation of improved health or recovery should be called GET rather than pacing, even if it is symptom rather than time contingent. It's still an inappropriate and harmful advise, even though less risky than the time contingent...

Interesting, do you have a link or reference?

Ok. But to be honest this doesn’t convince me. It’s a possibility but why would the patients do that? If you suppose they didn’t have ME and could have increased their activity level if they tried, why would they refuse to do so after signing up for a research study? Why would they covertly...

Thanks @Clementine What's your take of the report? Is it as good as we're being told? Are there any negative points? Many thanks in advance.

I'm confused: if Oxford patients are less ill wouldn't that result in less instead of more differences between patients and controls? [EDIT: sorry I misread: Oxford studies would probably show less differences so excluding them might indeed result in a larger mean difference] Just thought this...

I think this is interesting. There was allready a review on exercise tesing in ME/CFS by Nijs but this one pooled the VO2peak data. They found data in 32 studies (quite a lot) but they included studies that used the oxford criteria. Perhaps someone should write a letter, pointing out that the...

It requires PEM, the Oxford and Fukuda criteria don't. Being less bad is also an improvement I guess.