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Just checked my emails and found the response to our complaint: This post refers to our formal complaint about republication of the Larun 2019 review as if it were a new review dated 2024. A copy of the complaint was posted here...

As posted on the Letters and complaints locked thread: _______________ This post refers to our formal complaint about republication of the Larun 2019 review as if it were a new review dated 2024. A copy of the complaint was posted here...

This post refers to our formal complaint about republication of the Larun 2019 review as if it were a new review dated 2024. A copy of the complaint was posted here...

That sounds really sensible, boolybooly, but it's not as straighforward as you suggest. I am also a teacher, but while continuing to teach part time with mildish ME/CFS for over a decade, I didn't find my colleagues or bosses interested in learning about my experience or symptoms. None asked...

The others were controls.

The whole article seems to me to be based on self righteous judgemental attitudes held by people with the good fortune not to have to struggle with their society's misunderstanding of the wide range of human experience. And people mistaking their own interpretation of one person's experience as...

Still a version of GET, pacing up or whatever. It's revealing that those who don't recover are blamed.

Some posts have been moved to: Noise cancelling headphones! Oh Joy! (and other ways to block sound)

I've lost the plot somewhere. What is AR1?

Makes a change from the Polish study of putting people in a refrigerator. Maybe next it will be alternate heat and cold. Sounds like try anything therapy.

Blimey, that is seriously wrong on every count. It's gobsmackingly bad.

Thanks @DigitalDrifter and @Yann04. I agree very severe ME/CFS needs to have at least one other category, for which profound or extremely severe sound like good names. I also agree it's important this is recognised in information materials. I hope we'll do better when we write our factsheets.

What on earth is the point, apart from making money?

Not everyone with ME/CFS gets sore throats as a symptom, though it appears on some lists of possible ME/CFS symptoms and some report it particularly when in PEM.

The UK ME/CFS biobank does home visits to collect samples.

If anyone wants to discuss and ask questions about PEM, you can do so on this thread: PEM discussion thread

I'm not surprised. They have superficially gone along with the NICE guideline. Note that they say we "find overexertion to be detrimental" in this statement, yet in their position paper published in 2020 and updated in 2022 after the NICE guideline was published they say...

I agree with the recommendation to switch to NICE, though NICE is far from perfect, still including CBT and exercise in modified forms and sleep hygiene I think. My concern is more that if this is just one individual's blog, which it seems to be, then it will have no clout. And it's not all...

That's a pretty damning assessment of the RACGP ME/CFS guideline which is called a HANDI guide, and simply recommends GET, with PACE and Cochrane as references. I don't know who Jackie Stallard is, nor is there any information on the website about whether this is an individual or an...

I have some odd ways of coping. I guess we all eventually find our own ways. I've had a lot more years to learn to keep my emotions on a more even keel when the world around me is going mad. Doesn't always work of course. But I agree strong emotions, happy and sad, are draining for pwME...