Search results

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.

Grin over on twitter alleges that outcomes are getting worse because of the belief that ME/CFS is a biological disease rather than a functional disorder. Complete inversion of reality. NHS staff almost all adhere to the psychosomatic ideology and we can see that the geniuses involved in this...

Yep. Nothing will change unless they are exposed to personal legal liability. As long as they can continue to blame complex systems and other nebulous issues like lack of guidelines or training, they will continue to behave with impunity towards us.

Yep. And when it comes to medical advice, it doesn't even have to come under the official banner of GET to maim you. I started to have (mild in hindsight) symptoms of abnormal fatigue and prolonged recovery from exertion back in 1993-1994. Back in those days in the country I was living in no one...

Having been in a situation where I was down to just a few hundred calories a day of liquid diet due to severe ME/CFS in the past, I can confirm that the gag/cough reflex starts to deteriorate as you start to move toward the very severe end of the spectrum. I was often finding myself choking on...

Goal setting, graded eating therapy, all the usual nonsense. These people will just never get it.

I think these tidbits tell us all we need to know about the true opinions held by this witness.

I personally never click on these Reddit threads anymore, they just make me despair.