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They are panicking and resorting to personal attacks because they've lost the scientific debate.

I don't think it's possible to make progress without upsetting anyone. ME/CFS being moved out of the influence of CBT/GET therapists, mental health sections, psychiatry departments, certain Cochrane authors and so on is going to upset people who view it as theirs or who are tied in some way to...

Do you think that this instance of removal of junk scienc from NICE guideline will be the first domino piece to fall in a series of many others? Maybe Garner can see the domino pieces next in line better than we do. At least that's the explanation I give myself to explain why now so many people...

How unprofessional and irresponsible to make such a claim without evidence. Not to mention utterly absurd, given how severely impaired long covid patients often are. I doubt there is any reason to believe that nocebo effects can cause long lasting disability. It's just something Vogt and others...

@adambeyoncelowe can we get NICE to make a statement about whether or not they were pressured by patients? With the final guidelines approaching, we could be hearing the "patients pressured NICE" line more often. We must not allow the depiction of patient involvement as undue pressure.

I think you should post. And you should ask whether they have read the trials and the critiques. The people commenting on this topic don't seem to have a good understanding of PACE and ME/CFS. I think they do not understand what they are defending. The comment they make about case definition...

It would be good to add here that the committee's view on PEM being a characteristic feature of ME/CFS is generally in line with the view of ME/CFS experts and the IOM report. This shows that the NICE committee is following scientific mainstream opinion and not making up arbitrary rules to...

Re. the opinion piece: In other instances, such behaviour has been labelled very negatively.

Aripiprazole also affects ion channel function. Open channel block of Kv1.4 potassium channels by aripiprazole Not sure how plausible it is that this could be the mechanism of action in ME, but there may be other ion channels affected as well.

Journal link Sci-hub link Personal comment: episodes of paralysis or severe weakness which can be triggered by exertion, heat, cold, or occur upon awakening in the morning, and may improve with carbohydrates and electrolytes are symptom of periodic paralysis, although most people with periodic...

How would GRADE rate the unblinded Rituximab trial?

There is a list of studies here: https://me-pedia.org/wiki/List_of_enterovirus_infection_studies It's strange how little mention the enterovirus in tissue studies get. On the surface, the studies seem interesting and convincing. Why aren't scientists trying to replicate this? PS: I now see...

A possible connection to the horrible heat-induced orthostatic intolerance I get for a few weeks in the beginning of the hot summer.

I don't understand the finer details of GRADE but if it's true that it allows demonstratably flawed science to pass as adequate, then it's flawed and should be retired.

Even if it doesn't come across as entirely honest, that they have to take this position shows I think how much ground the psychosomatic brigade have lost. Someone that is trying to treat unexplained illness with CBT in a systematic manner is 100% in the psychosomatic camp no matter what they...

What they are doing is reinforcing stigma rather than dismantling it. If they can't deal with this constructively then they shouldn't be advocates. The policy of avoiding any association with ME/CFS could plausibly harm the LC patients with ME/CFS-like illness and the ME/CFS community. It also...

The ME denying long covid advocates all seem to be from the UK. What is it with the UK and hatred towards ME? And after disrespecting ME patients, these people manage to feel like the victims too and complain about being unpopular. I haven't seen this behaviour in American or Italian or German...

I would lik to try a vagus nerve stimulator. Nothing implanted, one of those ear clip ones, if they are any good.

I'm not sorry to say that if you're a LC advocate who intentionally avoids acknowledging similarities to ME/CFS then you're massively unkind and should leave advocacy to others. No you don't owe it to ME/CFS patients, but it also doesn't cost you anything. It's simply disease denial.