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I spoke to my physician about the inversion table. He's considering a type of cortisol/one to increase plasma production by the liver based on my nausea and dizziness easing on the inversion table. I forget which specific substance will be prescribed though. Has anyone else experienced this...

Fair enough and makes sense :)

Why were you worried? I have a lovely person from them coming out to me soon :)

Before anyone thinks my sympathy for the charities means that I don't see the human damage of the recent articles, I have been badly hurt myself by these articles. Just a few days before the infamous articles, I exhausted myself, and ironically so. I have a close family member, also extremely...

Firstly, I think all that ME Action and the ME Association are generally doing a fantastic job. Truly. The MEA response to Dr Potter's article was a huge mistake, but missteps are made by tired people, let alone volunteers with ME. I hope MEA does something to rectify that horrifically damaging...

He is setting the scene and building a narrative, with good advice in my view. He should have no interest in actual conversation. He should take excuses to leave an evidential trail of statements for his/their own career/PR/legal reasons. One message he must leave is that that understanding his...

Thank you everyone. Really good to share notes with more experienced pwMEs. Some of the humour made me smile - a thanks also for that :))))

Hello Has anyone else any experience of inversion tables? I find them beneficial in a way that I find difficult to explain - general reduction in symptoms and makes me chirpier. I also notice that not using the inversion table seems to have a cumulative bad effect. I have three vague theories...

Just saw this, while looking for related advice. The most solid definite advice I've come across again and again is to eat resistant carbohydrates, like cold pasta, potatoes or rice, but they must be cold. My memory is that it then hangs around 2 feed the bacteria, a little bit more than the...

That's what I thought.... Own goal, or is the wording smart-enough doublespeak?

Wow. How depressingly disappointing.

I wanted to point a condescendingly obvious point. I have no illusions about the practicalities of running charities as going concerns that function organisationally. But, I highlight this because there are those who would dismiss us on that basis, that we do not understand what is involved. If...

Correct me if I misunderstand, A4ME is then represented more than once on IAFME, via their own position and their membership of Forward ME, no? If that is the case, A4ME should relinquish direct membership. Or, at a minimum, the MEA should join themselves. Given profound concerns regarding the...

Dangerous territory... Unless compelled, why would you want to do this? Even if compelled, there is adequate medico-lega grounds to refuse.

Hello Has anyone ever engaged in microbiome testing to explore comorbidities / alternative causes for CFS symptoms? I'm interested generally, but esp if UK based. Thanks all :)

This thread is inspirational. Disgraceful that it is necessary. But brilliantly done. Thank you again @Trish. So very much. I keep sticking my head and up, saying things and then collapsing again :( I keep half writing more things for other advocacy fora here and this thread, then plopping and...

Exactly. There will not be a single NICE guideline, for example, for any illness of any kind that says 'do this to the patient, even if they give no consent'. It's always consent based. But not giving consent can be viewed almost as if you are irresponsible and not accepting care, whether for a...

Honest question to all you more seasoned MEers than me.... It is a loaded question, because I have a view about A4ME, but I'm wondering what company they keep in terms of other ME organisations... Is there any other charity that has such a dubious record and/or dubious reasoning that persists...

Thank you! Good luck with the letter. The people who broke me in two when I was newly ill last year were armed with their publications....

Sorry for not being explicit. It's an amazing letter @Trish :) Thank you. A4ME have already played a direct part in damaging my health. I had a few things I was going to add to my original message, that may or may not be best placed in your letter. But it's related at least, so want to flag...