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The test to determine whether some behaviour or statement about ME/CFS is okay or not is to replace ME/CFS with some respected illness. I find that this helps put things into perspective and opens one's eyes to how normalized it is to treat ME/CFS with disrespect. You might say: but maybe some...

This is similar to how homeopathy is often delivered. Homeopaths believe that they can figure out the right homeopathic remedy by learning a lot of about the patient. They are an attentive listener who will take time for the patient. This is probably an important reason why homeopathy has...

ME/CFS is not motor neurone disease but that doesn't make it acceptable to treat it like it's something patients inflict on themselves. Or something that you can wish or think yourself out of. Or any similar things. There is a big a problem with ME/CFS not being treated like other illnesses...

I suspect one of the main objectives of the BPS propaganda is to demoralize patients aware of the bad science so that they lose the will to fight back.

Would more nitric oxide help?

I see it different. Someone claiming that NICE changed the guidelines in response to pressure (and not evidence) is making an attack on both NICE and patients.

Yes, this is why we should get NICE to release a statement that they haven't been pressured by patients but found patient involvement valuable and so on.

The power of the BPS narrative is how it flatters one's ego. You get to tell sick people that they're preventing their own with recovery through negativity and this is, according to the BPS narrative, how you help the patients. Behaviour that would get you labelled as emotionally abusive in...

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?