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Works for me.

I also am dealing with long-term problems with low ferritin levels, and trying to get them back up and keep them there, with no other abnormal iron related measures and no sign of anaemia. Standard oral iron supplements are a disaster (ferrous sulphate, and Maltofer – the pill form is just...

Yes, which is one big reason they are so reluctant to accept criticisms of psycho-behavioural/rehabilitative studies for ME/CFS, et al. If they do accept them, then they have to face the fact that the broader project is also corrupted by these methodological problems.

Interesting development. :emoji_popcorn: :emoji_nerd:

With extremely serious consequences for you whether you accept the diagnosis and treatment or not. Lose-lose. It is an appallingly cruel Kafkaesque double bind to force a sick person into. - You are in denial. - No, I'm not. - So you admit it? Non-BPS papers get scrutinised by this forum...

When medicine cannot face up to its failures, and having them pointed out by their victims patients.

Abandoning both causality and falsification. :rofl::rofl::rofl: That is all they do. All the form, and none of the content.

Not clear to me that PEM is a on/off binary thing, nor could be meaningfully measured in that way. If anything, my experience suggest it is a continuous scale, but non-linear, which greatly complicates assessment of it. Complicated even further by the degree of non-linearity itself being highly...

This mode of low-intensity physical activity may confer mental health and physical benefits provided the activity is self-paced and within patient energy limits. Which is more-or-less what we have been saying all along. Let us figure out the best activity patterns and adaptation strategies for...

Don't have to eat the whole egg to know it is rotten.

Fair call. :thumbsup:

"explanatory power" That term doesn't mean what they think it means.

Count me among those very sceptical of the notion of a baseline. I regard that concept is not only unrealistic and irrelevant, but as being abused to prop up the failed psycho-behavioural-rehab model.

THIS! Don't give me false hope, especially if based on pseudo-science and hand-waving. That is the worst possible response. Exactly what patients do not need. If you got nothing, say so. Admit it. Then, and only then, is it possible to have realistic discussions about ways forward.

No argument there. I didn't mean to be critical of the patient reps, just of the profession's obsession with the 'fatigue' construct.

"fatigue disorders" :grumpy:

Real mystery why people who experience serious deterioration in their health when they do certain things would want to avoid doing those things. Is being wary of going near the edge of a high cliff a 'psychological inflexibility'?

In case anybody does not know, Children's Health Defense (Wikipedia article) is the organisation JFK Jr. helped set up and run to promote scepticism about vaccines and other some public health measures like fluoridation of water supplies.

:thumbup:

There is a blanket ban on blood donation for those with ME/CFS in Australia, which I support on precautionary grounds. I have an uncommon blood type and used to give blood regularly before getting ME/CFS. I decided to stop not long after getting it, years before getting diagnosed, and decades...