Search results

This thread might be useful: Mast Cell Activation Syndrome (MCAS) - discussion thread

I have some sympathy for Whitney, in that as a very sick person probably only able to read a little on social media, the last thing he would want is to be confronted with is people attacking each other. However, as a reader of his post, I had what I think is a natural reaction of feeling told...

How can they double blind beetroot juice versus water? And what is the hypothesis this would be testing?

I agree, it should be useful in all sorts of clinical contexts, not just physiotherapy. Many thanks to Physios for ME. And I agree with JemPD about changing noise to sound. NICE followed the advice from patient groups including S4ME to make that important change.

42 Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, CTRS. DISEASE CONTROL & PREVENTION, https://www.cdc.gov/me-cfs/treatment/index.html (last reviewed Jan. 28, 2021).

Some posts have been moved to: NHS England web pages on ME/CFS updated 29th October 2021 (NICE publication date)

I think the most annoying thing about this article is the authors' rewriting of each of 4 womens' words in order to 'explain' them and fit them into their model. The four short excerpts from 4 of the women participants about their experience of living with very severe, bed ridden, tube fed...

And another one: Bodies in lockdown: Young women’s narratives of falling severely ill with ME/CFS during childhood and adolescence, 2022, Krabbe et al

Another article from 2 years ago by the same team about the same group of 13 young women's experiences. The fragile process of Homecoming - Young women in recovery from severe ME/CFS 2022 Krabbe et al Edit: I haven't read the article this thread is about yet, but have just looked back at the...

Two things of particular note 1. Federovski hasn't understood PEM 2. He hasn't read the NICE guidelines properly. He says: That is not what NICE says. It allows for supervised exercise programs for those who want them, but not graded. NICE specifies that any exercise program must still keep...

I watched it for a few years a long time ago. They are people pitching their businesses to investors. They don't have to be innovative products, just potentially lucrative businesses.

Oh dear, it gets worse and worse. So it's a pyramid selling scheme like LP. I hope advertising standards will be able to put a stop to it.

The author seems to be a pharmacist who works in integrative medicine using herbs, nutrients and lifestyle advice. The article is long and rambling and I have only skimmed bits of it. I can't see it getting published in a mainstream journal, maybe an alt med one.

They specify that they were assessing CF not CFS, using the Chalder scale and including anyone who scored 4 or more on the 11 point scale.

I have no idea whether that makes sense physiologically. It doesn't make sense to me experientially.

Sounds like a worthwhile project for people with ALS. It's good to see there are over 100 clinicians and scientists participating in reviewing possible treatments. I had a friend with ALS and it's a truly terrible disease. For ME/CFS there isn't enough clinical trial research to be worth...

I've started a thread to discuss concern about Dr Strain's opinions. https://www.s4me.info/threads/can-we-do-anything-about-dr-david-strain-medical-advisor-to-action-for-me-in-the-uk.37027/

The reference for diagnosing chronic fatigue is the Chalder Fatigue Questionnaire.

Their conclusions about cause an effect in the second part I have highlighted makes no sense. Becoming sick will increase someone's stress and reduce 'self efficacy', not the other way around. The odds ratios seem pretty small and they don't give any data on scores on each questionnaire in each...

‘If Exercise Could Cure This, I Would Have Been Cured So Quickly’ Striving for fitness is usually healing. But for most people with long COVID, it can be toxic. By Katherine J. Wu The rest is paywalled. Does anyone have a free access link?