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On their website there's a short series of podcasts which the students on the project made on each of the six monthly occasions when they gathered together to be taught about how to diagnose functional somatic disorders and tell each other about their research. I listened to a couple. They come...

I'm sorry to see MERUK posting an article that gives the same credibility to serious scientific studies and a the quack Perrin technique based on a single study with no control group, unblinded with subjective outcomes done on pwLC who were early enough in their post Covid symptoms to be likely...

We have had confirmation that our complaint has been received by Cochrane.

I'm OK with that so long as it's clear the criticism is of some patients, and not about what they believe, which they are entitled to do about their own health, but about how they treat other patients who have a different perspective, experience and understanding of the lack of evidence for any...

10. I have just done the survey. I confess I gave a false name and the phone number of a pest control company. It's all the usual blah blah with questions they can twist to suit their prejudices.

As I guessed, it looks like a PhD project. The contact person has an MSc, and the groupies include Rona Moss-Morris as lead groupie, aka Principal Investigator.

[swearing deleted] Another questionnaire? Haven't we suffered enough?

I don't bash any researcher or idea. I do however wait for evidence to be strong before accepting any hypothesis to be likely to be true, and criticise politely those scientists who claim to know the answer when they don't have evidence to back it up. All I know right now is I'm sick and...

How do you validate predictive value of symptom based disease criteria when the disease is only defined by sets of symptoms? Inevitably different lists of symptoms will select different groups of patients. Valid for predicting what? I forsee yet more questionnaires, correlations that just show...

Does this fill you with despair? The whole thing seems to be based on the premise that all so called functional symptoms are psychosomatic, and therefore all conditions and syndromes which don't currently have a proven biological basis can be lumped together. In treatment terms this leads to...

I think I'll wait until they publish. Tweets by someone watching a talk that the speaker has presumably designed not to reveal the key findings of unpublished research, and another talk about an unproven hypothesis, no longer excite me.

We will check with them whether they have received the email and it hasn't gone to their spam folder!

CA$20.000 won't go far for a 4 year PhD project. I assume the project is already funded and this is just a top up.

Not that I'm aware of.

I guess you could write to him and ask for a copy. His contact details are given with the abstract: Correspondence to Professor Xavier Mariette, Rheumatology Department, Université Paris-Saclay, Hôpital Bicêtre, 78 Avenue du Général Leclerc, Le Kremlin Bicêtre, 94270, France...

The author is at the University of Sheffield which is where Christopher Burton and Vincent Deary are based who do awful stuff about MUS. We protested about Burton's appointment to the NICE committee and I think he was one of the ones who publicly resigned after the guideline had been agreed...

That's odd. The abstract is still available at the link and says it was published by the joural on 3rd November. https://ard.bmj.com/content/early/2023/11/02/ard-2023-224848

Thread on the study: https://www.s4me.info/threads/sars-cov-2-specific-immune-responses-in-patients-with-postviral-syndrome-after-suspected-covid-19-koralnik-et-al-2023.34927/

This looks like a really important report. The fact that half of the patients, ie over 300, report deterioration should be a wake up call for everyone attempting to rehabilitate with exercise people with PEM, whether diagnosed with ME/CFS or Long Covid.

Many thanks to the US organisation Long Covid Families who have added their name to the list of organisations supporting our campaign and agreed to promote the petition to their members. https://longcovidfamilies.org/about-us/