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Agitation - really? Or just warranted concern that your whole life has been turned upside down and the medical profession and everyone you know keep wittering on about 'looking on the bright side', 'going for a walk' and 'sleep hygiene'? Yeah, nah. ME/CFS does not equal fatigue. Ref 25 is from...

Cherry-picked participants; cherry-picked outcomes. Another study in a long line of studies, this one with a hopelessly small sample size. And still there is no convincing case made for the treatment. Katherine Jongsma, Bri Susanna Darboh, Sasha Davis & Emily MacKillop It's worth...

Jin-Seok Lee ab, Wakiro Sato c, Chang-Gue Son ab a Research Center for CFS/ME, Daejeon Hospital of Daejeon University, Daejeon, Republic of Korea b Institute of Bioscience & Integrative Medicine, Daejeon University, Daejeon, Republic of Korea c Department of Immunology, National Center of...

This paper follows on from an earlier literature review by the first author and other co-authors that had a lot of problems. Could the kynurenine pathway be the key missing piece of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) complex puzzle?, 2022, Kavyani I have yet to have a...

The study is discussed more here: UK:ME Association funds research for a new clinical assessment toolkit in NHS ME/CFS specialist services, 2023 Members have criticised the lack of attention to objective measures in a clinical assessment toolkit that aims to quantify disability, track progress...

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...