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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, but not now. Also, there are people who have been diagnosed who have been told and genuinely believe that their condition is down to past...

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 twist it to suit. Edit - as in it suits them if you accept your symptoms and go away.

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 downloading an app on their smartphones. Edit- also re the app - I found keeping a diary for symptoms and activities a huge additional burden in the past...

I think this is the problem with "repurposed" philosophies. I have no problem accepting certain things I cannot change - like the weather. I can even go so far as accepting things that cannot be changed for now - like I have ME and my life being completely altered. However, why should I...

@MerryB, it seems to me you are assuming that these questionnaires will be able to accurately identify sub-types. Why? Most of the questionnaires were designed for other patient groups and may erroneously cause a different diagnosis to ME, or erroneously diagnose co morbities. So I...

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 data from questionnaires - especially ones not particularly suitable for ME patients that can lead to misinterpretation seems like a massive waste of...

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 significant temperature change, but mine alternated with episodes of being freezing cold. My immediate family members and I all have autoimmune disorders...

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 the contrary, tried the fake it till you make it approach to recovery. Clearly that didn't work out very well. :rolleyes:

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 designed for ME patients and then had results misinterpreted and used against us. In the future this information will presumably be shared...

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 find sunglasses can help reduce it and make less distracting. Edit - though my shades have prescription lenses too.

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 blurring is definitely related to ME. As eye movement and focusing are controlled by muscles I've always assumed it's down to that. I have regular...

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 we are to believe talking therapies are effective for some then we need to acknowledge they could be harmful for others, especially when...

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 been sensitive to bright lights and certain lighting triggered migraines since about 20 years before ME onset. About a decade ago my migraines changed...

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 increasing care pathways and referring limitations pressed on them. The system imposes rules and guidelines on them while the workload ensures very little...

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 individual GP, sometimes it's not their fault.

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 job, no longer able to enjoy (by which I mean participate) in hobbies. All the previous milestones I measured my life by gone. However, further...