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They have been trained, it's just they've been taught that ME patients are whiny somatizers with s*** life syndrome. Changing doctors' beliefs about ME is such a huge task that I believe it would be easier if we start fresh with a new diagnosis rather than fix the corrupt definition of ME.

Anybody else angry at this? https://www.nhs.uk/conditions/chronic-fatigue-syndrome-cfs/treatment/

I couldn't see where they mentioned ME but in general having overly broad criteria is bad for research and bad for the reputation of the illnesses you're researching. Think of the Oxford criteria and 2007 NICE criteria for ME.

The main issue with Ramsay's definition is that it never meant damage from exercise, there was no talk of LTSE. So it leaves a lot of patients like me without a diagnosis that fits them.

I just read this posted in a Long Covid Reddit and was about to post it here. It's just a pre-print but could @Jonathan Edwards take a look at it?

I'm very severe and can't type much but here's something I wrote back in 2018 about my experience: I was sectioned on 20th August 2014 and kept there for a month. The staff in the psychiatric ward told me I wasn't in any pain and on one occasion refused to help me up after I'd fallen over due...

Great movie. At some point Nicolas Cage's character says he refused to do business with Osama bin Laden, not for any moral concern but because he was known for missing payments.

So I've been saying it wrong all these years? Do you literally sound out post-exertional malaise every time you read PEM?

They mean different things to different people but I think diluting the criteria to allow for fatigue after exercise can be highly misleading. PEM to me is deterioration from exertion that is long lasting not just feeling a little puffed out after going for a walk.

The CCC allows for post exertion fatigue in place of PEM so it could include non ME patients. https://me-pedia.org/wiki/Canadian_Consensus_Criteria

But then doctors will say it's not IgE so it's not a real allergy which leaves patients without a diagnosis. I'm not saying that I know that MCAS is correct, but it seems there's a diagnostic void here.

What diagnosis do you propose we give to these patients who are presenting with idiopathic allergies?

It was toward the forum in general not just you. Shepherd is soft upon BPS propaganda and Russell Fleming doesn't seem to understand why having a test to prove ME is real, matters.

@Firestormer (Russell Fleming) was upon record as saying it doesn't matter if there's no test for ME because there's no treatment. The treatment is consideration, I've become 100% bed bound without it. Again I tried to warn you. Saying testing that can prove we're really seriously ill, doesn't...

I tried to warn you: https://www.s4me.info/threads/poll-have-you-ever-believed-in-psychosomatic-illness.34205/page-3#post-484876

Which one and why?

Not happy with that, I'm a permanent deteriorater, I've been 100% bed bound and unable to talk for many years.

SEID is a better name than CFS, however those of us who are harmed by exercise should get the label Deteriorative Exertion Intolerance Disease.

https://www.bbc.com/news/health-69040592.amp Discussed on this thread: BBC: Long Covid course [LP] is ‘exploiting people’, says ex-GB rower, 2024, article and radio program

Trish it says long term but not permanent. I've never seen a published paper say permanent. The closest I've seen is this: https://pubmed.ncbi.nlm.nih.gov/36984572/