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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...

I assumed I had this so I got a 5-hour oral glucose tolerance test which turned out to be normal. I think the symptoms some people attribute to hypoglycaemia are actually due to abnormal autonomic response to feeding. Eating triggers POTS-like symptoms for me.

I think it's possible that this is a component of the problem, though not the whole problem. I don't think gastroparesis can be dismissed out of hand because severe ME/CFS patients are usually too sick to undergo invasive investigations so research is done on the less severe. I also think...

I recently became aware of a case of a woman in her early 30s with preexisting POTS, anxiety and depression. Long story short, symptoms that were initially dismissed as anxiety etc. turned out to be a NSTEMI.

Multidisciplinary approach is a codeword for getting psych involved.

He was talking about clinical practice not trials. You can find a trial out there for any quackery for cancer including Chinese herbs.

Complete bald faced lie. No one has ever used CBT to relieve symptoms of cancer or RA. CBT is used to treat comorbid anxiety and depression in those populations.