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Thanks, Peter. I think it's worth having it linked on this thread. Thread here: Blog series: "Orthodoxy on trial: the pathogenesis of a diagnosis" by David Black

The replacement of fatigue questionnaires with objective activity measurement as described here seems to me to be the only way to go for ME/CFS clinical trials. However well designed a questionnaire, it can never accurately and objectively measure the fatigue/fatiguability/exertion intolerance...

Hi @Barry, as you see, some of us have been trying this. I too have been getting lots of ads for Visible on FB.

I'm in the process of drafting a possible letter to the MEA about this project and some of our members' concerns about it. The article on this thread rang bells in this context: Opinion: Treading Fine Lines by Harriot Carroll [on ME/CFS/LongCovid patient/researcher relationships] .

Good thoughtful article from someone who is both scientist and patient. This bit rang lots of bells, I hope researchers read it: Quote: Scientists (and medical professionals) Whether we like to admit it or not, there is often a level of arrogance in science and medicine. In some cases...

This sort of home real time record keeping is becoming more common with chronic illnesses. I have very mild asthma, and was invited by my GP practice asthma nurse via email to sign up to an asthma app. I didn't bother, as it's only occasional allergic asthma, so doesn't need daily monitoring...

Good for you. I think everyone fighting this in the best way they can using all avenues open to us is justified in doing so.

I have been thinking about what sort of record keeping and data collection I think would be most helpful to me as a pwME for a specialist service to collect: An alternative proposal A proposed alternative set of PROMS, questionnaires and data collection to be useful for clinical care visits...

First model ward (clinic) for severely affected children and adolescents in Munich is co-funded by the ME/CFS Research Foundation https://mecfs-research.org/en/researchfunding-munich/

The Zoe Covid app had 4.7 million users. I wonder how the 3000 subgroup in this study were selected. If participation was offered to far more than 3000, it seems likely that those with both hypermobile joints and Long Covid would be more inclined to fill in the questionnares, so skewing the results.

I did.

That's a very good well researched article with lots of familiar names quoted.

Which one was that?

The 2-day CPET main finding about differences with health controls on day 2 have been replicated multiple times. I think the details of blood and urine differences in the days following the 2-day CPET still need replicatiion.

And were the participants who put their health on the line to take part in a pretty gruelling study told in advance that this was Walitt's intention?

It's difficult to say when an individual genuinely wanting to share their happy experience with a treatment tips over into unevidenced claims of efficacy of that treatment for others, and further into promoting their own experience as supporting the whole BPS cabal despite evidence that the...

Whitney Dafoe is another well known example. I'm sure there are others.

Summary of the latest S4ME letter to Cochrane: We mark the fact that it's 6 months since we first wrote to Cochrane and no action has been taken on our requests, and no progress has been made on the new review. We formally present the petition to Cochrane and encourage them to read the...

The committee has sent a new letter to key people at Cochrane, posted on the letter thread: https://www.s4me.info/threads/s4me-2023-open-letter-to-cochrane-request-for-action-on-the-me-cfs-exercise-therapy-review.34973/page-2#post-521800 It's quite long, so I'll summarise it in the next post.

I like the idea of the MEA/AfME/Bell scales because they are short, the person only has to select a single answer, so it's quick and easy to fill in, and in situations where we need a quick and clear indicator of level of disability, such as benefit applications, explaining to carers and...