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This conference is happening now. You have to sign up for it. I don't know whether you can still do so while it's happening. I have just started watching 2 hours into the first day, with Carmen Scheibenbogen speaking. Mostly I expect to catch up with talks when they are posted on the website...

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Which patients are not allowed to attend. I asked. See the BACME thread.

See this thread: https://www.s4me.info/threads/suramin-as-a-possible-treatment-for-autism-me-cfs-and-long-covid.184/ I seem to remember forum discussion didn't find the suramin for autism study particularly convincing.

My father had a post infectious illness in the 1930s. One difference then was that doctors put him on extended sick leave and told him not to do any physical or mental work until he recovered. He had recurrences of what the GP diagnosed as a recurring virus in the 1950's and 60's and again the...

I also am not enthusiastic about using Unrest as a medical education tool. Without discussing the details of Jen Brea's illness, I'd just say her case seemed atypical in some ways, and therefore gives a confusing picture of ME/CFS. The few friends and family who watched it said they saw it more...

To take a very oversimplified example, say in a town of 10,000 people, one person per year gets ME/CFS, average age 25, none recover and they die at average age 75. So on average there are 50 pwME in the town. Each year there's a new pwME aged 25, and a pwME dies aged 75. If incidence and...

I don't think the logic of an ever increasing number makes sense. For every disease that doesn't have unusual factors leading to increased or decreased incidence, there should be a steady state of prevalence where new cases are balanced out by older cases dying, whether of the disease or other...

It looks from the abstract that this was done with healthy participants, and seems to be saying if a cognitive task is mentally tiring, people slow down and go for accuracy rather than speed, and after the task their physical function (hand grip) decreases. Surely this shows that even healthy...

I think prevalence was probably pretty stable for a long time, but surely now with many people meeting ME/CFS criteria following Covid infection, the prevalence may have at least doubled.

That sounds really well organised and effective. We'll done.

While I agree individuals should have a right to make their own decisions about their lives, I think we can only make genuinely autonomous decisions if we are also provided with the care and support we need to live with our disabilities or illnesses in the best way possible, and there is...

Does anyone know who, or which group is proposing this?

This is just silly. What on earth useful information do they think they can get from a long list of sentences including the word 'rest', some of them sensible, some completely daft. I assume they have designed some sort of grouping into symptom severity, behaviour, what you can and can't do...

Well, what a surprise, women are more likely to have menstrual pain than men. Hold the front page.

According to News Medical Life Sciences, however, the symptoms do improve after two years. From the conclusion of the linked article:

I agree with all of this post. How dare they whinge about their badly run and unscientifically reported study being not well received. How dare they compare their discomfort with being told they got some things wrong, and their slightly bruised egos, with the suffering of millions of sick...

Which makes it all the more concerning that the MEA are working with BACME to produce materials for use in ME/CFS clinics Yes, of course I agree it will take far more than a letter to get fundamental change. Disbanding BACME seems to me to be the only real solution.

Apologies for getting the name wrong. Thread here: UK: ME Local Network

Thank you, @Simon M for the article and @chillier and Audrey for your work. It is such important work. We need to know whether the hopes that have been raised by several tiny studies about 'something in the blood' can be replicated. In terms of funding, I would hope that UK government funding...