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Being a young woman, gastroenterology will try to diagnose you with a fake eating disorder no matter what's wrong. It happened to me when I was a couple of years older than her and my gastroparesis started. I wasn't even underweight.

Yep. The MDT concluded it was functional and this explains everything that followed, including the “inexplicable” reluctance to try anything else and extreme statements like TPN will definitely cause sepsis and make your stomach atrophy from misuse. This killed her and they all got away with it.

When I had Covid again this year, the chronic symptoms of gastroparesis, nausea and vomiting flared up by 100x.

Uh, the symptoms are exactly the same. Every public utterance by this guy has been frightening. Since no one at the NIH has disavowed any of his unhinged statements about us, I take that as a sign that he represents the majority view there.

Yes, exactly. It's a widespread problem in ME/CFS advocacy. Objective facts like patients being mistreated in hospitals or CBT/GET being ineffective are often paired with dubious claims about causation and treatment. We see this all the time from well-meaning doctors who advocate for us on...

It appears that Strain alleges that death from malnutrition in ME/CFS is much more common than we thought. Unfortunately, he's right about there being no evidence-based treatment for OI in ME/CFS. The information contained in Weir's letters would have been dismissed as quackery by the NHS...

She says the following: @swastrosarah 1/2 In court, Strin said there is no treatment for OI. In a risk management meeting with social services he said, "there have been 18 deaths due to a form of serious CFS in the last 6 years and Sarah is convinced Maeve will be the 19th person; however 16 of...

@swastrosarah Alice Barrett would have died an identical death under his care had we - the patient carer community - not used an open inquest to persuade BBC to shame RDUH into action." @swastrosarah #pwME If you or your #Close2ME have the capacity to sue for medical negligence of #ME, contact...

Trial participant in ecstasy for PTSD makes serious allegations regarding reporting of serious adverse events:

This is GET.

Powerful post. I agree 100%. Having seen people’s true face, I will never trust anyone again.

Everyone in the psych-skeptic community accepts these points as given when applied to various scammy clinical trials of biological interventions. Yet none of them have ever spoken against the exact same biases affecting BPS/functional disorders trials.

How convenient for them, since ME/CFS isn’t part of any specialty. They can all just wash their hands of us.

Great letter by Joan. Something very annoying is happening with the CODES trial. They took a different approach to PACE. They transparently reported in the original Lancet Psychiatry paper that the treatment didn't work, unlike PACE investigators who changed the protocol midway through to cover...

Exactly. And when they say they believe ME/CFS is “real”, what they actually mean is that it’s functional but that functional disorders are real. Of course, being classified in such a way results in getting awful medical care in the belief that medical care makes functional disorders worse.

An absolute farce from start to finish. Disgusting and disappointing verdict. Although I fully expected it, I’m still disappointed.

I thought the whole point of GET was to teach you that relapses aren't real and that you should carry on with increased activity.

Fludrocortisone is ineffective for ME/CFS. Double-blind RCT: https://jamanetwork.com/journals/jama/fullarticle/193426 There is no evidence that inability to sit up is due to low blood volume or that blood volume expansion can reverse orthostatic intolerance. Treatments promoted for POTS like...

Is the other thing FII? Fabricated or induced illness, what they used to call Munchausen’s. Again, like true FND, this is quite rare, even rarer by proxy.

19th century concepts of neurasthenia and hysteria (later called conversion disorder, now called FND) were not considered to be the same disorder. Neurasthenia had symptoms along the lines of what we call ME/CFS or POTS today whereas hysteria had to do with motor or sensory issues like weak limb...