Search results

I had a very gradual deterioration over many years, slowly getting worse with pushing past my deterioration threshold, although there were some more sudden worsenings by more major over exertions. My sensory symptoms and sleep issues were particularly gradual. Deteriorative doesn't necessarily...

What can we do to get deterioraters such as myself a suitable diagnosis that fully reflects their symptoms? It's become clear to me that there's no room for permanent damage being believed under an ME diagnosis, not even our own fact sheet says this exists. It all makes me feel very invalidated...

What do you class as genuine ME then? Also which pre-Covid prevalence figures do you believe because the 250,000 figure often cited is derived from the criteria you disqualified? https://meassociation.org.uk/2024/05/how-many-people-have-me-cfs-in-the-uk/

https://jnnp.bmj.com/content/83/3/248

Citation needed.

Can you elaborate? I've never heard of a information sheet in the context of clinical trials before, how would the information sheet in my trial be any different or less honest from the information sheet in similar research? It's been done before here: https://pubmed.ncbi.nlm.nih.gov/20047707/ .

If I had that kind of money, the first thing I'd fund is a CBT trial using objective outcomes (actigraphy) before, at 3 months, and after 1 year, just so I can disprove the nonsense that most GPs believe. Hopefully the BPS brigade would lose credibility if my study was well publicized.

What do you think the correct number should be?

Unpopular opinion: I think the pre-Covid 250,000 figure was an over estimate, 250,000 would have been about 0.4% of the UK population at the time, but according to some sources the stricter CCC yields a prevalence of 0.11%. https://meassociation.org.uk/2024/05/how-many-people-have-me-cfs-in-the-uk/

Simon says: A little less T-cells and a little more psychology.

So are you saying that if a patient gets PEM from emotional exertion then their illness is partially psychosomatic?

I already made a similar thread here: https://www.s4me.info/threads/challenging-skeptics-including-the-medical-profession-where-are-they.24361/ You can try your luck upon Reddit but there's no guarantee of being listened to: https://old.reddit.com/r/doctorsUK/...

This paper praised a brain retraining program which is a huge red flag for me. Reference 33 points to a study of Fibromyalgia and Chronic Fatigue not CFS or ME.

Unfortunately some won't believe until they get it themselves.

046 - Does oxaloacetate reduce ME/CFS fatigue? @6:40 He mentions using the Chalder Fatigue Scale uncritically, so this is not a study of PEM-ME.

What dodgy studies have they funded? I did a quick search but found this instead: https://meassociation.org.uk/complementary-treatments/ I'm kind of disappointed that the ME Association weren't more critical of alternative medicine, I got the feeling they were trying to be neutral not to upset...

He doesn't mention damage from exercise anywhere in the video. I'm repeating myself again but Shepherd represents and advocates for Ramsay-ME and not PEM-ME.

Symptoms from odors should be treated as if they are just as real and deteriorative as PEM from light or sound.

DEID - Deteriorative Exertion Intolerance Disease.

Are you condoning the use of the Oxford criteria for ME? Why conflate Fibromyalgia with ME? They are opposites, Fibromyalgia is a non-deteriorative diagnosis with patients often reporting improvement from exercise whereas ME is deteriorative illness with patients often reporting relapse from...