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Thanks, Peter, I'll pass your offer to the committee.

We don't currently have a committee or staff volunteer to run the S4ME Facebook account.

I get migraines, sometimes with the visual effects before the headache and sometimes one or the other. The first time I had the visual effect I was only 15 and terrified I was going blind. My mother just said, oh, yes, that's a migraine aura. @perchance dreamer, it's good you are getting your...

I suspect it will be the most inappropriate hospital department like psychiatry or rehabiltiation medicine which sees a chance of some easy money and provide an extremely minimal service run by therapists.

A study so brief and without a control group shouldn't be allowed to report improvement as the headline outcome in the title. Surely something like this should just be checking for feasiblity and acceptablity.

One thing I noticed at the time on Twitter when this survey was done was that a lot of people trying out treatments were using multiple treatments at the same time and claiming they could tell which ones were working, or adding new ones every week or 2. It's all such a muddle. Testing any...

@hallmarkOvME, you might find it interesting to go back to the start of this thread and read the first few pages, and look at some of the other threads linked there also. People on this forum have been discussing the usefulness or otherwise of MCAS as a diagnostic category for years. No one...

I have no idea who these people tweeting are. Can someone tell us whether they are random people chatting or researchers planning a project.

Following recent concerns expressed about the BACME guide for therapists and their dysregulation model, I decided to take another look at their guide for severe and very severe ME/CFS...

Collecting data like this with an online survey publicised on Twitter is bound to bring in masses of misinformation. I can't remember all the details. We did discuss this survey when the results were published. Did you take into account how long participants had used the drugs, what else they...

An advertisement for social prescribing. The government will love this. From skim reading, it looks like the main outcome is the patients involved most valued being believed and meeting others with shared experiences. The authors are mostly from the county public health department. The sample...

I have now read the whole article. It is addressed specifically to GP practice nurses and informs them that: ME/CFS is a seriously debilitating condition affecting over a million people in the UK. It's shown to be biomedical - ref to DecodeME. A significant proportion (10 to 25% quoted) are...

Can someone message me a copy of the whole article? I don't want to comment based on a few quotes. Edit: I have now received a copy.

The document seems to repeat the problem I see on the MEA website. Lots of stuff about what they are doing with ICB's in terms of meetings and advising, but no information about what they are advising the ICB's to provide except vaguely the NICE guidelines. Which could be just more BPS BACME...

I agree it's not her fault. I hope us all thinking about how articles can be misused is worth doing if only so in future some advocates may be able to add wording to articles that describe patients experiences to the effect that psychobehavioural approaches have been shown not to be effective...

I agree it's not Dr Cheston's fault that her valuable work laying out clearly how sick pwME are and how badly we are treated has been misused in this journal special edition. Of course it is important that patient's real experiences are made clear to medical providers and decision makers about...

They have no idea.

Yes, I agree palliative medicine is the most appropriate medical specialism for people with very severe ME/CFS. I think the suggestion has come up before and is worth making again. But, even for life threatening diseases such as terminal cancer and motor neuron disease, I think palliative...

how can doing hundreds of sit ups in an hour be non aerobic exercise?

Yes, just seeing the heading made me wonder what new horror is being visited on us by the NHS as 'treatment'.