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The link tells me I'm forbidden access. I don't want to read it, I was just curious to glance through to see the department this was in. Presumably psychology or health psychology. I wish psychologists would stay away from pretending they have useful things to say about physical conditions.

Gaslighting as I understand it from the film, which I haven't seen, is more than trivialising, it's persuading the person to believe lies and to learn to distrust their own experience as a method of coercive control. That's what the directive CBT and GET aimed to do. They tell the pwME their...

I too am very concerned that people reading some threads on this forum are getting the impression that there is a general dismissal by at least some members of diagnoses of POTS, hEDS and MCAS as 'fake' syndromes, and by implication that the patients are 'faking it', and/or that their doctors...

I do the banner. I used to post the news and put the banner up straight after posting. Now that ahimsa is posting the news, the timing of the banner depends on when I'm next on the forum and see the news has been posted. ahimsa can't do the banner as it requires admin access which I have as a mod.

I'm sorry, Turtle, I don’t understand your question. Can you explain a bit more what you mean?

I add my thanks to @LizWorthey for joining us to discuss your research and answer questions. I hope you will stick around and join in other research discussions here relevant to your field of research when you have time too.

I don't think it's an individual person being referred to with moderate ME/CFS who needs to sleep or rest in the afternoons. I think it's in some document describing severity levels.

I agree 100% with this. But how do we get our UK advocacy groups to see it?

I like the idea of more accessible and usable wearables for sick people.

I knew I'd come across the word 'hassles' in ME/CFS research before. It was in truly dreadful studies by Friedberg discussed here and here. One of them included the suggestion that watching ducks on a pond might be an upliftiing activity for pwME. Quack Quack.

A more useful study would be long term follow up with the hope peddlers' clients. How many clients have been seriously harmed by trying to live up to all this toxic positivity? How many are suicidal because they are told they aren't trying hard enough and find hope is false hope? This whole...

Reaching new heights in self aggrandisement surely, calling it a state of the art review.

Thank you for speaking up. We do need to all understand the effect of our words. I think we are all in different ways finding this a troubling situation and are struggling to find out whether anything can be done about how people with whatever diagosis are treated. We do all want to work...

Having read the above summary of the article, I am curious to understand whether severe reactions usually presenting as anaphlaxis are more common in people with ME/CFS than in the general community. Or is it some other version of MCAS that is being diagnosed. Can someone point me to the...

I thought it was time I tried to find out more about MCAS for myself, as this discussion is so active at present and clearly raising strong reactions. Since I'm in the UK, I wanted to find out what is being advised for the NHS. As far as I can see there is no NICE guideline for MCAS, but I did...

I am confused by your reaction, @rvallee. Can you help me to understand? You seem to be saying this thread is about blaming the victim, ie patients. That's far from what I'm talking about. I agree we have, in ME/CFS, a disputed diagnosis that a lot of physicians don't believe has any...

I think this may illustrate a difference between the UK and USA.

I think any article also needs to make it clear that this is work in progress and it may be that further research will provide more (or less) support for a mast cell activation disorder and some version of a connection between joint hypermobility with othe symptoms for some people, and...

If you only follow up for 60 minutes and don't do any follow up of symptoms afterwards over the following days, you neatly avoid learning anything about PEM.

It would probably also be useful to ask a clinician, or clinicians' organisation, to provide us with a statement of the evidence base they are using to justify adding these diagnoses for their patients with ME/CFS, rather than leaving it to patients to try to defend their diagnoses. If anyone...