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I am too I’ll to read this but why and how, did she “lose half her blood” ?

Oh @ola_cohn you are treating us today! They do like to Conclude, by announcing that they have almost/absolutely learned nothing at all by pursuing their chosen course of personal interest, but that these lack of findings mean it is vital to hand over the money so that they and theirs can do it...

Sometimes I just think I’d like to sit around day after day month after month year after year making up acronyms and scores. Would I need to see any results for my work in terms of positive health outcomes for the subjects of my project? No. I don’t think a lack of any tangible positive...

Yes. Everything that was won was fought for.

I guess they rewrote this statement initially because they had to. To appear relevant they needed that -last updated on -date to be later than the NICE guideline release date. It looks like at some point in the process they then found a good deal of enthusiasm for the project , unnecessarily...

“Some advice on managing your condition may be all that you need to help you.” No. It mayn’t. It may not.

Okay so. On the one hand they have clearly felt pressure to be slightly less directly dismissive and derogatory. On the other hand. “can be as disabling as other chronic conditions” It depends which conditions doesn’t it? Depends on how affected a person is with another chronic condition...

Thank you @Arnie Pye. The post was inconsiderately long I appreciate you for reading. I over read on BPS today. In looking back I just realised I’ve posted in the wrong thread, so my words may or may not apply to this particular batch of bad research. I hope they don’t actually.

Highlights Shame commonly contributes to the aetiology and clinical presentation of PNES. How do you know? You don’t, do you? Shame may cause difficulties with engagement in treatment of PNE. “May” it? You haven’t really committed to this one have you? High shame proneness and shame...

Thanks I enjoy that! I’ve not heard it before but it does sound rather familiar ;)

A researcher focuses their work openly and squarely on the “cost” of disabled people staying alive. They find “costs” are rising. They express interest in reducing these. We know. We understand the implications. Again a researcher offers less and less concealment for a particular ideological...

Thanks @Hutan. That’s an interesting update. I agree on the autoimmune condition possibility and yes we don’t know enough yet.

Could we perhaps formally if necessary ask ALL the charities to prioritise this? And then probably possibility of getting LC groups on FB (heard they are massive) and Twitter where there are loads of health professionals with LC who now don’t appreciate the poor offer. And also Mind not sure...

Absolutely, why are they quite so keen to stitch up their patients? Most of us are not in the position to fight legally but I hope they -pandemic so the odds are good- choose to pick on someone with the financial and physical resources to punch back hard and fast enough to really hurt them.

Same same. March 2020 not yet recovered. Solidarity.

Yeah and my blood ‘feels’ like it flows too slowly and all my tissues hurt and they all need lovely healthy blood. So the Bad Blood theory is quite acceptable to me on an intuitive level. I am not sure about the treatment and have some concerns over unintended consequences that might arise when...

Thanks @Hutan. This brought back some deeply unpleasant information I’d read and forgotten. “With medication, treatment and a rehabilitation programme, I am now looking at a full-time return to work in the summer.” I expect we can imagine the rehabilitation program. But what medication...

That’s what I thought. I have LC + ME. I would love to find the answer but I am really worried by this one. One or both illnesses could possibly be haematological. But if so they would still be illnesses with an ongoing pathological process. Chronic illness. Not an acute transitory attack...

Umm. I don’t think depression is an illness/disease. I think it’s a collection of symptoms that can arise from a multitude of different causes. Diseases so many we know about and so many we don’t. Environmental pollution and nutritional deficiency due to many causes. C/PTSD and ongoing abuse...

I think they are saying “high intensity psychological intervention” to make CBT sound like more of a substantial and serious offer than it actually is. A precious and valuable resource to be coveted. To make it something someone would consider queueing for. Rather than the short term budget...