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from a post elsewhere:

https://bmcresnotes.biomedcentral.com/articles/10.1186/s13104-015-1742-3 Persistent polyclonal binucleated B-cell lymphocytosis and MECOM gene amplification This study suggests PPBL is not just higher than normal levels of lymphocytes - only 69% of the 150 diagnosed patients had elevated...

Yeah, I don't know how unusual the symptoms are. It does sound a bit poorly defined. from https://www.nature.com/articles/leu201477

The fatigue predates the PPBL diagnosis. Despite my initial reaction to the abstract, the study seems well-intentioned. It appears that these people with PPBL have been having their symptoms (which do seem to be ME/CFS-like) dismissed or given little recognition by doctors. So, this study...

New paper out: Patients with Persistent Polyclonal B-Cell Lymphocytosis Share the Symptomatic Criteria of Systemic Exertion Intolerance Disease, 2021, Morizot et al

This latest Castro-Marrero trial is of a good size (70 participants in each arm after dropouts). Despite what the abstract says, the data does not suggest the CoQ10 +NADH treatment is helpful for people with ME/CFS, at least when taken for two months.

I'm disappointed - I'd love to think that CoQ10+NADH would make me feel significantly better. But, despite the spin and the persuasive discussion about anti-oxidants and mitochondria, there's nothing in the results that suggests that it will. The conclusion in the abstract is unwarranted. I...

This seems odd - why would an ME/CFS pilot study for a supplement cocktail aiming to increase energy only focus on pain and sleep quality, rather than fatigue and activity levels? There is no reference given for this pilot study in this un-finalised version of the paper. Around 104 people were...

Effect of Dietary Coenzyme Q10 Plus NADH Supplementation on Fatigue Perception and Health-Related QoL in ... ME/CFS, 2021, Castro-Marrero et al. A new study out from the Castro-Marrero team, who did an earlier study of CoQ10 and NADH supplementation - discussed earlier in this thread.

There's some discussion of an earlier 8 week trial of CoQ10 and NADH by these researchers here: CoQ10 - Coenzyme Q10There was some association with a supplement manufacturer in that earlier study, and the benefit reported was just slightly more than zero. It will be interesting to look at this...

from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5697388/

And therein lies one major bias in this sort of research. Any veteran with a chronic illness and a firm belief that their illness is not psychogenic is likely to not be keen on participating in a study where the lead author comes from a 'Mental-illness Research, Education and Clinical Centre'...

i.e. we don't know how to fix whatever problems resulted from exposure to the 'certain nuclear, biological and chemical agents', so we'll label these people with a made-up patient-blaming problem and treat them for that instead.

This Turkish group have found corneal nerve fibre loss in some other conditions. 40 people who had a Covid-19 infection, 22 of whom had Long Covid symptoms at 4 weeks, and 30 healthy controls. Cornea nerves - healthy controls; people with Covid-19 plus LC symptoms; people with Covid-19 minus...

The tool to measure mental health problems is something called the 'Malaise Inventory'. :confused:

I'm not sure that it is 'not a nice letter'. One of the links in the letter is to a paper that referred to both CFS and FND as neurological conditions and concluded: I think the letter writer may actually have been saying, 'look, you said Long Covid is a lot like CFS - maybe a better...

We have these threads that may be appropriate for some of your posts: Long Covid epidemiology (prevalence, incidence, recovery rates) Long Covid biomedical research (not epidemiology)

Yes. I just wasn't sure if Julia Newton retained some ongoing responsibility too. It appears not, so all the more reason to give that PACE page a good re-write.

Sonya Chowdhury's response to the complaint looks good and I agree that AfME have better things to do now than deal with this complaint. But, I do note, clicking through to the AfME page about the PACE trial, that it could be a lot better. It still gives an impression of some fence-sitting...

A number of earlier threads have commented on AfME documents and webpages: 'Pacing for people with M.E.' Action for ME booklet - revised and updated January 2020. Open Letter to the Chief Executive of Action for ME about the AfME web page on Graded Exercise Therapy (members only) A4ME Treatment...