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I agree but why then do they not champion PWME? Remember that the EDS story was primarily popularised by Hans Knoop. Basically when it comes to medicine the Guardian prefers popular memes to science.

The greatest danger of the NICE committee failing to reach a sensible conclusion came from downgrading evidence quality on the pretext of disease criteria within the bogus GRADE system rather than applying clear thinking and downgrading on bad methodology. Arguing on the basis of disease...

I agree that if you interested in an illness characterised by PEM then you should put that in your criteria. But every piece of medical research asks a different question. Would LongCovid research be ME research? - depends. In general much more confusion is caused by trying to pigeonhole...

What is so distressing is that the Guardian, supposedly the champion of the underdog, is incapable of championing people with chronic illness against psychological pseudoscience yet is suddenly ready to do so when they take up biomedical pseudoscience.

If they had put the numerical data in the abstract rather than talking immunological gibberish I would have taken more note. I got as far in the methods as 'retrospective case control study'. Forget it. Cytokines can cause inflammation when produced OUTSIDE the circulation - to call cells...

To be honest I have never seen comparability across research studies as being of great importance. Good studies produce answers. Poor studies don't. When I was researching RA I never found disease criteria relevant. Each time I was asking a different question. Criteria are important for...

So who are 'they'? 'hEDS' is defined as EDS only involving joints without other systems involved. I know this because I wrote one of the first papers purporting to show otherwise*. The whole thing is a muddle. There are people with lots of symptoms but it does not help to give them the wrong...

The point I want to make is that people like this are clearly suffering but the label hEDS is made up by doctors who don't understand what they are doing. Whether or not people's joints actually dislocate doing ordinary things is always difficult to know. That they have a problem I accept, but...

https://www.theguardian.com/society/2022/feb/23/the-doctor-who-was-told-her-illness-was-all-in-her-head-and-is-transforming-the-treatment-of-her-rare-genetic-condition This does not help anyone as far as I can see. OK, the BPS roadshow is a disaster but so is this. I noted this paragraph: It...

Selection of cohorts is always a matter for the individual experiment or study. Journal referees may ask for certain criteria to be used but there is no particular reason why they would ask for what is in NICE guidelines. In research criteria are justified by: 1. Being suited to the scientific...

Immunoinflammatory pathway activation is one of the most researched topics related to CFS [14, 16]. Immune activation markers in CFS include increased levels of proinflammatory cytokines such as TNF-α, IL-6, and IL-1β [27, 28]. Three out of four citations are to Maes including the dreaded...

I just don't see this E12. I can't even think of an example of an unpleasant social media message right now. Maybe I just don't see them. What has become clear to me since the 'pause' at NICE is just how ingrained the BPS approach is in the profession anyway. Wessely is popular because what he...

I really don't see the validity or relevance of that E12. We are dealing with a quite unusual group of charlatans who have preyed on the ME community because the rest of the medical profession have no interest and find it convenient to let them do so. The scientists I know who I consider at...

A clear case of a beam in one's own eye. Only 10% of patients are deluded enough to think they are still ill after a year. But 100% of rehabilitationists are deluded enough to think they can take the credit for this.

I checked MEG on PubMed and found a systematic review from the last year. Basically it seems to say that nobody knows whether MEG is useful in this situation. There is no usable evidence (see below). The doctor quoted in the article above works for a private company. It doesn't sound like a...

The senior author has never found knowing nothing about a subject an obstacle to publication.

It seems to be in the public domain now;).

So this might be yet another intolerance, like exertion intolerance and light intolerance - CO2 intolerance! It is conceivable. I am a bit sceptical that PWME actually have low CO2 levels though - other than maybe in some test situations or during episodes of distress. I also doubt that it...

I sent them this: Dear Drs Flottorp, Brurberg, Knoop, Fink, Wyller and Garner, I was saddened to see the continued attempts to discredit NICE in the Comment on the ME/CFS Guideline in the Lancet and associated messages on social media. This will perpetuate distrust between patient and medical...

I don't think this will work. If you have low CO2 all you need to do is breath a bit more slowly or less deeply and it will come up. (Unless of course the low CO2 is associated with a metabolic acidosis, but that would show up on pH.)