Search results

My limitations don't vary hour to hour or between days, I'm very severe and never have miracle cures or good days. There are plenty of ME patients who's symptoms don't wax and wane.

I'm not convinced that the rapid muscle fatigue-ability that Dr. Melvin Ramsay described was the same PEM we describe today, even people's descriptions of PEM don't all match up.

Isn't that a problem with other illnesses though? For example: someone could be experience MS but without anything showing up on an MRI scan. Likewise someone could have no symptoms but show abnormal signs on scans.

What would you class as valid? What research would you accept as proof of abnormality that can be put to clinical use?

I've heard different definitions of somatisation, it seems to be used as code for either hysteria or hypochondria, or at least inconsequential symptoms. Based on what evidence? I wonder what the "eds" after Sharpe's name means.

I think all research papers should be free to access for everyone not just a privileged few. That way there will be a better chance at spotting flaws and improving research.

After getting ME and seeing the flawed (sometimes fraudulent like PACE) research I lost a lot of respect for scientific journals and the peer review process. This doesn't make me anti-science, just more cautious about what I believe. I think faith in science is an oxymoron, however people and...

This comment could fit right in the "Why do people believe in psychosomatic explanations" thread. Sceptics often say "We're not saying your symptoms are fake by saying it's psychosomatic", but that's usually just gaslighting in my experience (including of being sectioned and told by staff that I...

I noticed there's no mention of PEM in these early leaflets, did that term get coined later on?

With people like Wessely you have to listen to what they don't say as much as what they do say, where in his long distinguished career has he said ME is an intolerance of exercise & exertion for example?

In my experience that's just gaslighting when it comes to ME, they don't treat you as if your symptoms are real.

I think that over population is an issue. If every woman in the world only had one child until the earth's population is 10% of what it is now then the world would be a better place. I say this as someone who has been made completely bed-bound by inappropriate accommodation and lack of care. My...

Does anyone know what ME criteria they are using for this study? I'm not happy with that figure, I think it's based on the flawed 1994 CDC criteria. My bolding, I am very happy to see ME be described properly for once.

In regards to the FIQ, by default I'm in no pain but I'm very severe, I'm limited by how low my threshold is. Scales need to measure the threshold for worsening symptoms, how long the worsening lasts, what lowers your threshold, etc. Another problem is that I'm so severely disabled that I...

Pain catastrophizing is just a modern word for hypochondriac. It shouldn't be applied to anyone without objective proof.

I believe it was Simon Wessely who called it a brilliant move of diplomacy or something to that effect.

I've never heard of a country where doctors recognise ME. Does anybody know of one?

Thanks to lockdown and complicated circumstances, I've been left without any one to shower me and haven't had a proper shower since March.

ME is an adverse reaction to exercise or exertion not merely fatigue. I don't think it's fair to call this a trial for ME patients. Imagine if they redefined cancer as 6 months of fatigue, re-branded it as CFS/Cancer and then claimed that CBT and exercise were the best evidenced-based...