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apologies if I'm lowering the tone/standards here but thanks for posting this @rvallee : " Replying to @PaulGarnerWoof The natural LC recovery rates are in the range of 50-70% in the first 6 months. You are literally doing the same thing as people who drink their urine because it "cured"...

Yes, as per other comments - he's rubbing salt into wounds here --- "recovered ME/CFS patient changed my beliefs, used cognitive approaches and GET, which led to my recovery; Nov: holiday. I have not been through LP". So, if you'd followed his messianic advice/example you too would be diving on...

"increase confidence in symptom self-management" If I meet someone having a heart attack I must remember to --- increase their confidence in system self management. OK it's based on the concept that part of the problem is your reaction to the symptom --- where's the evidence to support that/this...

What a title: "The Good Hope Exercise and Rehabilitation (GEAR) Program for People With Ehlers-Danlos Syndromes and Generalized Hypermobility Spectrum Disorders" made me laugh. If it were a restaurant called "Good Hope" you'd probably think --- why not get a good chef --- more like "Good Luck" ---.

Thank you.

Dam cheek - society barely funds any research and e.g. countries could provide specialist services and support intensive assessments/testing to try to understand and treat where possible + plus provide cohorts for research studies. In the UK, GET was enforced rather than offered i.e. re access...

Thank you for your coherent reply. Sorry you're health is so poor. As I read your reply, I thought - have I suggested ME/CFS is untreatable? The answer is that I don't think we've had access to much of what science can deliver today e.g. at last a GWAS study is underway. Another comment that...

Question - why has no one, to our knowledge, coincidentally taken a drug which cured their ME/CFS? OK rituximab was thought to work i.e. after it appeared to cure people who had ME/CFS but that doesn't appear to have held up.

Actually “learned helplessness” leading to genetic studies, actimetry/sleep studies (to try to improve functioning in the short term), would be helpful --- where Lenny goes with current "helplessness" isn't. You do feel like asking - did you read what you wrote before submitting it? As for the...

[EDIT - hadn't read the comments above before posting this!] Yea we don't know the underlying disease process in ME/CFS, or long COVID, so why send people to a rheumatologist? OK if we knew that ME/CFS, or long COVID, were B-cell autoimmune diseases (we don't) and the rheumatologist was a...

Indeed - I'm in favour of researching anything that improves the health of people who are ill - may turn up something but I'd have thought a disrupted pathway (vitamin K2 or whatever) would have been flagged up in other studies.

Not sure if it helps the discussion in terms of neurological associations (ME/CFS)- https://www.s4me.info/threads/genetic-association-study-in-myalgic-encephalomyelitis-chronic-fatigue-syndrome-me-cfs-identifies-several-potential-risk-loci-2022-hajdarevic-et-al.25070/

Yea and why publish crap when you could easily include objective outcome indicators like FitBit, hours worked, attendance at school/education --- OK those are inconvenient i.e. since they show your intervention doesn't work.

My education lets me down but reading this made me chuckle "Delphi process" ---- does that involve visiting some "mystic" who says some profound things --- which you are required to believe have meaning i.e. even if you don't understand them at the time? Could you skip a couple of thousand...

Yea trialling medicines is one way of understanding ME/CFS and potentially treating it. Sometimes there's an accidental finding (e.g. treating someone with ME/CFS with drugs for another disease) which suggests the drug might work --- not sure that applies in this case. Fluge and Mella (of...

One for @Snow Leopard - from memory you are interested in the NO pathway, vasodilation.

Think it was this program* which highlighted that the UK spends roughly the same as Spain & Portugal on the health (NHS) - countries like France & Germany spend much more. OK - Jonathan has highlighted the fact that the NHS needs more money - so really just confirmation. *BBC Radio 4 The...

From Wikipedia: "Endocytosis is a cellular process in which substances are brought into the cell. The material to be internalized is surrounded by an area of cell membrane, which then buds off inside the cell to form a vesicle containing the ingested material. Endocytosis includes pinocytosis...

Yea I was really impressed by the statement @Simon M Typical of the professionalism they have exhibited.

The UK Government/establishment have form ---- think PACE, Crawley ----. So perhaps disappointing rather than surprising. That would surprise me/disappoint me - hopefully the ME/CFS & Long Covid charities are cooperating to challenge this.