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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...

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Copied post Paul Garner and Fiona Symington work together on the Consumer Advisory Council of COFFI, the BPS organisation. https://www.coffi-collaborative.com/consumer-advisory-committee See this thread: COFFI - The international collaborative on fatigue following infection

Paul Garner and Fiona Symington work together on the Consumer Advisory Council of COFFI, the BPS organisation. https://www.coffi-collaborative.com/consumer-advisory-committee See this thread: COFFI - The international collaborative on fatigue following infection

Posts about Paul Garner and his co letter writer Fiona Symington have been moved to Paul Garner on Long Covid and ME/CFS - BMJ articles and other media.