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One thing I would like other people to know is that it could happen it them. From 7-70 no one is immune. Even if they didn't get it and someone in their family did, life could change drastically quite quickly. Many who can afford to take out insurance policies, or have policies with their...

We've been discussing the name here: https://www.s4me.info/threads/me-seid-a-more-accurate-illness-name-than-me-cfs-words-only-nothing-to-do-with-diagnostic-criteria.13858/ And discussing the term "fatigue" here...

I think a number of patients are scared that if CFS were to be dropped, where would that leave them? Say it was decided to call it XYZ syndrome with a given criteria, those whose condition is described by that criteria may be happy enough. Patients who are diagnosed with much looser criteria...

Yep, but it gives people something to whinge about. Another distraction from the elephant in the room, which is the disease itself. That's the problem with the name, and part of the genius in muddying the waters with "CFS", it's a divide and conquer strategy. While we're arguing among...

Me too! I really don't think we're there yet though. Ironically, until the risk of harm and the potential level of harm is finally acknowledged, they'll continue on. There's no risk to them. It's like that old song.... " there's a hole in the bucket... " I am hoping for some positive...

I believe there is a desperate need for respite beds for ME patients, however I'm not sure I would want to see charities pushing for this. The danger of it turning into some sort of rehabilitation or forcing people into therapy is simply too high. Especially in a psych unit. Even if you...

Sadly, I'd put money on AfME...... The problem is these sods get access to the very bewildered and newly diagnosed who understandably will do anything they say to get better and will probably even be relieved it's nothing serious and a bit of taking themselves in hand will sort it out. By the...

[Bolding mine] Yes, it's funny what you don't find when you don't look for it isn't it? I agree research is needed to conclude if there are adverse effects. It's a shame really, if clinics & trials had been designed and run properly then that data would be there. How many more patients would...

If we were to reuse one of our previous names then.... Ramsey - not everyone who now has a diagnosis of ME/CFS would be included. As far as I know I would, but you wouldn't want to leave people behind. Place names - Royal Free, Akureyri, Incline (possibly not as could be misread as...

They're not allowed to do that anymore. It's a shame because, even if it was allowed as an interim measure, it would allow naming that isn't potentially inaccurate due to lack of understanding of aetiology, or lack of diagnostic criteria. It's neutral. I'd be happy enough with that - I didn't...

The only reason I don't want my illness viewed as psychological is because I desperately want to get better. If the last 30 years of (wasted) research funding on psych research is anything to go by then if they have proved anything it is that ME/CFS is not what they think it is & nor is it...

Welsh is a lovely language. On a number of occasions I "had to" spend a week or even a fortnight in Wales. One of the sites was entirely Welsh speaking. Beautiful, musical language. They had to reset a lot of passwords for me, mind. Most of the high level passwords were in Welsh and there...

in fairness to them this was before I got ME.... But yeah, suddenly 12-18 hour days become the norm and you even get "homework" to do on your commute.

I know it's come up before. I remember describing it before too. Maybe elsewhere as you say @Hell..hath..no..fury... It does make a difference. I can change a double duvet using this method & my winter duvet is one of those that clips together sets - a 3.5 tog with a 10 tog. So bulky. I...

My top duvet covet changing method - if you can't get someone else to do which is far better - When handling the duvet I tend to roll it up as it makes for easier handling. Make sure duvet cover is inside out. Place it pattern or top side down on the bed and spread it out fully. Opening end...

This reminds me of an NLP course that we were all sent on in the early 90s. There was a lot of focus on "negative self talk". I'm sure the 30 people (out of 60) sold off on a 3 month contract with no guarantee of.continued employment found it very helpful. Not. It certainly did nothing for...

Me too. I don't believe I have EDS but looking at the chart in post #7 above I am surprised at the number of things I would say yes to. Despite the fact I consider myself to be quite a "stiff" person. I especially noticed this in yoga class where there were other women of a similar age. 2 of...

I agree. On the other hand the BPS publicity arm a.k.a. the SMC will continue to use those terms in news articles. I have had specialists agree that the name is a nightmare, but if they are writing to my GP or reports for employers or insurers they need to use the common terminology. This is...

There have been a number of med shortages over the last year. Generally due to pharma companies buying each other out, or moving manufacturing plants, some of them to China, and delays in setting up new production lines etc... It has affected one med I take, although we've got a work around...

This is the damage caused by not - -Defining harms in a reasonable & sensible way -Not having appropriate means to record harms -Not listening to patients or denying they are credible witnesses to their own experience It also highlights that the people in charge of decisions and policy...