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I think because a) pain is something that is easily understandable to the average person, unlike PEM, and b) many people with fibro who don't suffer from PEM can work, so people are less likely to decide they're lazy. But it is still a target for the psychobehavioural crowd. And many people are...

I understand this hesitance, but I feel that in many cases of medical gaslighting the doctor is either saying whatever will get them out of the office quick enough, or convincing them in a framework like functional or mind body that is not the framework they use in their interactions with...

The next step is SequenceME. Even a fool could see that. If they have no intention of doing that I doubt they have the intelligence to fund good quality smaller projects. The level of dishonesty in these responses [edit: the government's PMQ responses, to be clear] is sickening.

If they havent figured out by now that non-pharmalogical interventions aren't likely to do much, I don't know what to tell them.

I can't speak for anyone else but I am most interested in BTN2A2 and OLFM4, because they seem to relate to aspects of immune signalling.

Perhaps a day where the researchers who have a immume signalling loop theory can present their research/theorising and what their next steps to prove or falsify their hypothesis would be. If we think it's likely a signalling problem perhaps presenting the aformentioned theories plus the...

Anyone know more about this?

I just don't understand how it isn't crystal clear to everyone at this point that exercise doesn't help treat ME or LC. If this wasn't ideological, it would have ceased to be recommended everywhere after the PACE reanalysis. Instead we now have nearly another decade of low quality studies...

Honestly I swear some doctors are going to need actual deprogramming from experts in helping the victims of cults before they admit it's not psychological. We'll all be lining up to get the treatment and they'll be saying that the treatment is a placebo and that their colleagues administering it...

These people wouldn't know a mechinism oriented approach if one jumped up and slapped them in the face!

This is all very Wallitt-esque. Disappointing.

That man has entirely too much influence.

The phrase 'it's always projection' springs to mind...

I probably don't need to say this but this is the kind of evidence that needs to be collected and preserved: a senior professional deliberately using their influence to suppress legitimate criticism of their work. There are a lot of examples of SW and other BPS eminents doing this and I think...

I think this is why people like SW cling to power like limpets. It's because when they relinquish it, they can't keep a lid on the stories about their unethical and unpleasant behaviour. I am reminded (for no possible reason related to the comment I'm replying to or what I've just said) of the...

@Andy do you know whether this was asked in the DecodeME questionnaire?

That is a worry! Although maybe there are drugs that can increase NK function in pwME if its related to drug action. Or there are other anti cd38s or LLPC depleting drugs (depending on whether its llpc or other immune cells we want to target) that we can give low NK cell people. Edit: Oh weaker...

No, unless JAK-STAT inhibitors turn out to help a subset, which I don't think is as likely as dara working, although I do think it's possible. I'm not discounting the possibility of a breakthrough in the basic science leading to treatment trials in the near future but as far as treatments...

So hopefully a preprint sometime in 2028 in that case! I am incredibly anxious to see how these patients respond. If they have a similar response to the original pilot responders it will be a sign that the effect may be real and there may be merit to the NK separation thing. If they don't then...

No its ok I understand you're limited in what you can share. I would be interested in knowing more when you can say more because I thought the kind of interferon signalling you talk about probably wouldn't show up in blood.