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They are trying to eradicate the ME and ME/CFS diagnoses, and turn them back into 'fatigue' syndromes, and hence 'functional'. This general trend and desire has long history, starting with the introduction of the CFS name in 1988. Wessely tried to unilaterally change the UK's WHO...

Inappropriate diagnosis is far more of a concern to me. Disease mongering by big Pharma... What about psycho-social pathology mongering by the psych lobby? that is a far more insidious problem, in no small part because it is orders of magnitude more difficult to measure accurately. Which is...

That certainly holds true for me. I have never stopped wanting to have a life, to be active and do stuff, from mundane practical daily tasks through to lofty life goals. If we were just depressed we could not have got anywhere near as much done as we have via forums like this and other means...

Yes, I am very much of the view that psychosomatics, certainly in its current form, is just a giant and cruel excuse generating machine for both medicine and broader society. All because they simply cannot say: 'We don't know.'

Yep. To the point of not just absurdity, but cruel false hope. It is like how athletic records might continue to be broken, but they are being so by ever smaller margins. They are already down to hundredths of a second (2 decimal places) in most sports, which is already practically meaningless...

Seems to me that our best option at this point is to concentrate on pushing hard for a full sequencing study. Which mostly means getting the funding for it. Sooner rather than later, so we don't lose the current momentum. Maybe that should be the focus of our donation drives now.

If the whole shitty ME/CFS saga proves anything, it is that a lack of direct experience of a disease process/state is all too often a major barrier to understanding its nature and consequences, and to finding solutions to it. Indeed, it can be highly misleading.

Can the pain field learn anything from the functional somatic disorder field? Sure they can. But that is the wrong question. The right question is what will they learn, and will it benefit patients? To which the indisputable answer is: how to get it even more wrong, and no.

I remain deeply sceptical that those reporting recovery are actually fully recovered, and not simply lucky enough to be among the minority who get sustained remissions.

When a typo is both hilarious and depressing. :) :(

I have never really understood what is meant by 'self', beyond the obvious and rather mundane point that all of us have unique combinations of major and minor genetically and environmentally driven variables. Even identical twins turn out at least somewhat differently.

ADHD, being one of the poster children for that definitional issue.

Count me among those unconvinced that the adult brain can reorganise to any major degree.

Unfortunately for many diseases the first symptoms the patient experiences are often vague generic stuff, like fatigue or aches or cognitive-sensory issues, which are too easily and frequently misinterpreted by clinicians as being of psycho-social origin. A friend of mine had gastrointestinal...

I have had a number of assessments by various clinicians, including physios, over the years and more than one has noted that I do not lack core strength or muscle mass, plus basic reflexes, coordination, etc. How does this fit into the critical deconditioning part of the psycho-behavioural...

Where's the accountability? Why are people like this so protected? :mad::mad::mad:

The real psycho-social pathology in ME/CFS. Entirely secondary, entirely avoidable.

Thanks. That is encouraging. :)

Still get night sweats sometimes, though nowhere near as often nor to the degree as during the early years.

Same basic stuff underneath. But LP is both more extreme, and more blatant about it. (I sometimes wonder how much damage Crawely did to her own reputation & standing within the profession with that study, and if that had anything to do with her retiring.)