Agreed, but with the way the condition has been (mis)diagnosed I think we're unlikely to get that. Maybe when research is much further forward,...
No @Anna H, I understand its not what you meant, but I think that's the purpose of ACT in "medicine". They take a philosophy out of context and...
Would this involve signing up or committing to using their app? Some ME patients don't use smartphones. Others (like me) will not agree to...
I think this is the problem with "repurposed" philosophies. I have no problem accepting certain things I cannot change - like the weather. I can...
@MerryB, it seems to me you are assuming that these questionnaires will be able to accurately identify sub-types. Why? Most of the...
Sounds like "old wine in new bottles" to me. :whistle:
I would much rather the focus of the research remained tight - gather the genetic data and see what comes out of it. Spending money gathering...
I'm delighted for you @Woolie! I find it very interesting - like you I had episodes where it felt to me like I was burning hot without any...
I think most of us already proved them wrong anyway. Most of us had jobs, kids, mortgages, car payments etc and so, in the absence of advice to...
I worry about the use of most of the currently available questionnaires. Many of us have had to fill in questionnaires that were not specifically...
Good luck with it @Sarah94. Hope it goes well.
Like you, my eye muscle fatigue and "snow" occur independently. I need to wear glasses anyway and have done since before this all started. I...
I have tinnitus too but didn't connect them. I've had tinnitus since young childhood. It started after I had both tonsils and adenoids out. The...
Yep. I will happily take part in this research, but I have zero tolerance for ambiguous questions.
I also think one of the issues is that there seems to be an assumption that CBT or talking therapies can do no harm, even if they don't help. If...
I've had floaters ever since I can remember and long, long before I got ME. I've had routine eye checks and eye health is fine. I have always...
And there's the rub....in cut price medicine they don't want to pay for expertise. The questionnaire is used instead of. It shouldn't be, but it is.
I'm going to write this and then hide. Yes, GPs are part of the problem. However, they are under significant time pressures and have ever...
Sometimes GP referrals are refused or limited higher up the chain by the CCGs or the regional authority is. So while it may well be the...
I'm sorry @Hip, that sounds very bleak. Horrible. I think this is it in a nutshell. I could easily describe my life as living in a vacuum - no...
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