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https://meassociation.org.uk/2024/08/explaining-electrophysiological-properties-of-cells/

I wish. The NIH posted this study on their twitter feed and the interpretation from healthy trolls in replies was along the lines of "of course all their lab tests are normal, it's a psychological condition".

NIH press release here: Routine lab tests are not a reliable way to diagnose long COVID My goodness. They needed to waste time and money figuring this out? If routine blood tests could diagnose ME/CFS aka Long Covid, we wouldn't be here.

These delusions of having control over your own health are feeding into societal ableism and abuse towards us. Healthy people assume that those of us who are unhealthy didn't take care of our health, didn't work out etc. As if any of those things matter. You contract a virus and never recover...

Yes but the gastroenterologist will be just fine. It's the families, particularly the mothers, who will get brutalised by the state when something goes wrong.

Yep. They can dismiss survey evidence of worsening from GET as anecdotal. I would think that such legal action currently has no hope of success. The majority of people were harmed by GET when GET was the standard of care. Although the NICE guidelines have been updated, there is currently no...

I'm seeing this more and more on social media. Risky. Leaving aside the issue of whether this is real or not, pursuing unconventional treatments, especially surgical treatments, that are not recognised by mainstream medical authorities in your country could result in the parent and the child...

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.