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I have something a tad more extreme but fortunately happened only once at this level of severity. It was during my PhD candidacy, a little after I started to realize I was having even worse cognitive issues. I was walking from my office area to either the library or bookshop. Suddenly I stopped...

Some of my past blogs were just this, but we need to get this stuff into social media, not hidden on a forum.

I have been saying for years now that psychobabble operates by persuasive rhetoric. More recently I made an analogy with psychobabble being medical politics. BPS is the definition of zombie science, science that should die because it has no merit or has been disproved, but kept alive for...

It is definitely cheaper for medical insurers and disability insurers. It looks cheaper on the books for government too, where they can ignore the long term financial implications, and other implications for the economy.

Disagree here. Fairy tales often have a purposeful and useful moral dimension, like the boy who cried wolf. BPS ideology is an ideology that serves vested power interests far more than patients, and is often morally dubious in the best possible light, versus outright morally bankrupt.

Just some thoughts. Loss of physical capacity means you cannot do stuff, its about what you can do as a person. However loss of cognitive capacity does not just mean you lose cognitive function, it can impact on your identity, its about who you are as a person. I agree with an earlier comment...

I was a PhD candidate. I reached the point where talking was very painful due to the cognitive demand, I could not read, and I could not write, and I could not count to three. Nearly always doctors ignore the cognitive impairment issues, they literally have no idea what to make of it. We might...

The opposite in my view. The cognitive dysfunction stops us from discussing it most of the time if I use my own experience. Right now I can only engage because I just got up from a nap.

It was cognitive dysfunction that ended any chance at a career for me. It is cognitive dysfunction that stops me from advocating, writing articles and my book. Physical dysfunction is bad, I am nearly totally housebound, and for twenty years I was in extreme pain from widespread muscle issues...

You cannot prepare for a future as a sick patient if you do not understand you might not recover.

There are many studies looking at a large array of things that have had findings, like the metabolomic studies. I think we need studies that combine all the promising broad tests on a single cohort. Comparing between cohorts is very problematic. Something like this would definitely require a...

These days cell line studies from actual patients are a great early alternative. They can also be genetically modified if necessary, to alter specific genes if we can identify them (such as gene knockouts etc.). For an even earlier alternative in testing we have genetically modified yeast, which...

There may be a range of natural supplements or treatments that might work. All requiring clinical trials of course. Also there are a great many drugs that never made it to market, which can be rapidly tested on testbeds (if we build them) and then go to clinical trial. Then there are potential...

I think this is badly needed.

There are hundreds if not thousands of metabolic problems in ME. Its a side that lacks investigation, though we have way too many areas that lack investigation. It is probably (but not certainly) not a primary cause, but may be a secondary cause in that it induces complications and symptoms. If...

Any experienced metabolic researcher.

Tai Chi was one of the things I tried a long time ago, maybe in the 90s, maybe the 80s. It made me worse. I suspect some mild patients might find it helpful, but I doubt any patient who is severe or worse will benefit. I think many will get worse.

Diaphragmatic breath meditation was what I was doing in the 80s. I found it induced PEM. I had to stop. However I had massive lung capacity back then, and could easily hold my breath for 5 minutes.

:)

In many cases the remaining symptoms after infection are due to the immune system still being active, not so much the pathogen. I can stay sick for eight or nine months after I recover from an infection.