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My experience with one adult and two young people going through the assessment and monitoring stages for ME/CFS is that medical records are totally inadequate as a representation of symptoms and disease progression for adult patients, and even worse than totally inadequate for young patients.

If I had invented the green toes drug and really wanted to know if it worked, I'd arrange to have a control cohort. I'd have people in both cohorts have their toes covered with an adhesive bandage that showed if it was tampered with, and have them video themselves each time they take the pill...

I like this idea a lot. I think it is relevant to not just the UK, but wherever there are ME/CFS/LC services. In my career, I had some involvement with organisation certification schemes. They made a difference to the quality of the organisations and also helped consumers identify which...

The 2009 Light study found I don't know how the 2009 Light study determined gene expression for TLR-4 - by expression on PBMCs or by soluble TLR4. This 2023 study found:

Utterly horrifying. Kasia Kozlowska 1,2,3,* , Olivia Schollar-Root 1, Blanche Savage 1,4, Clare Hawkes 1, Catherine Chudleigh 1,4, Jyoti Raghunandan 1, Stephen Scher 5,6 and Helene Helgeland 7 1. Department of Psychological Medicine, The Children’s Hospital at Westmead, Westmead, NSW 2145...

I've watched the whole thing and I agree. It is very good. If everyone saw this video and took what is said on board, we'd be in a whole lot better place than we are.

For more on The Sick Times, see here: The Sick Times: A journalist-founded website chronicling the Long Covid crisis

See my post above. There is a normal CPET to generate the VO2 peak, then a three minute rest sitting on the bike, and then another bout of cycling to exhaustion which generates the VO2 SM.

I think they care, but they seem fundamentally incapable of accepting that nothing they do is actually going to fix the patient.

This seems like a well-conducted and careful study. But it does seem as though they may have looked where it was easy to look, rather than where a difference might be found. Their conclusion seems a bit premature:

It sounds as though many of the participants did have fatigue (30/40). Table 3 is an interesting table of symptoms in the PCS cohort. Only one of the 40 had anxiety and only 2 out of the 40 had depression. "Paroxysmal orthostatic tachycardia syndrome (POTS)" :). 16/40 reported cognitive...

They don't tell us how the PCS people were diagnosed - but they were diagnosed by a respiratory team. I wonder if that skewed the selection to people with lung damage rather than ME/CFS-like disease? Is the retinal superficial capillary plexus only enough? I think we have seen a couple of...

Many thanks to two ME/CFS research foundations who have added their names to the list of organisations supporting the open letter: ME/CFS Research Foundation gGMBH in Germany WE&ME Foundation in Austria This brings the number of supporting organisations to 69, from 24 countries.

It's really important that anyone who participates in a clinical trial with significant risk of harm asks about compensation in case of injury and gets something in writing from the researcher. Ethics committees should not approve studies that do not have adequate insurance - the researcher...

If a label of fibromyalgia is pejorative, and it often is, that illustrates a whole other problem. There's the same issue with labelling some people with Long Covid with ME/CFS. Running away from existing labels largely due to the stigma they create doesn't help move the understanding of these...

Karolinska , Sweden This looks like an interesting study; relatively small numbers. This doesn't surprise me, as I think POTS symptoms are something that comes and goes in many people with ME/CFS. And so, whether a person is given the label of POTS can depend a lot on chance, on how the person...

I guess if you want to recruit people for ME/CFS studies, or you want to participate in them, then its important to have a good way of diagnosing the illness. And research is really the only way out of this for us. For an individual who doesn't want to participate in research, I agree, on...

The abstract doesn't read well but the paper seems to be generally sympathetic and relatively informed, at least as far as I have got. I mean they use Fukuda, which isn't great, but they are also talking about possible mitochondrial dysfunction. I think there are some translation issues e.g...

If I was a cynical person, I might think that this is an attempt to add a subjective measure to a condition that is defined objectively. So a BPS intervention which might have little impact on the objective outcomes but, by changing the way a person reports symptoms, might still be able to...

PETITION UPDATE Cochrane refuses to follow its own complaints procedure NOV 19, 2023 — As we have reported, the Science for ME committee submitted a series of complaints under Cochrane's official complaints procedure on 31st October about the Editor-in-Chief Karla Soares-Weiser's mishandling...