Apologies if this question is a bit off-topic. Not too long before I got ME, I went on a hiking holiday in the Peak District. On the last day I...
Great! Thanks for your reply!
I just had an idea (apologies @Andy @Chris Ponting if you have already discussed this). With the questionnaires that people will be asked to fill...
I may be wrong, but I don't think that method would be possible due to GDPR rules. Patients have to give permission for their medical records to...
I quite like this idea. I think there is big opportunity with this study, if the outreach and marketing strategies are planned and pitched right,...
I agree, I think educating people about what the study is, what it isn't, and what will and won't be done (in lay language) with the genetic data...
Quick question to @Andy @Chris Ponting , and I apologise if I missed the answer to this in the FAQs: Will you be asking patients to send in...
Yes, I was thinking that even the process of recruiting for such a big genetics study, if promoted properly, might help to convince some of the...
Sorry - I misinterpreted the meaning of your original statement :) Yes I think many people will probably be recruited 'through the grapevine'. I...
I am not sure I agree. There are many people with ME who are on GP or ME/CFS clinic registers who probably aren't engaged at all with ME...
I totally understand why you suggest this. But I think AFME have a big following of patients who are not aware of the history and politics of ME,...
Same here. I thought it was just fatigue causing me to be so foggy headed and so desperate to lie down. It was only after the NIH conference that...
Oh dear, maybe try decaf? I have just discovered you can get very nice decaf ground coffee :geek: My dumbest method of crashing is going...
I can feel that I always have a lack of energy reserves even when not 'fatigued'. E.g. when I'm not in a crash, I can feel that the...
I don't think the Biobank uses exercise challenges at the moment. They do a hand grip strength test and a 10min standing test, which could cause...
No problem! If it helps at all, I also got a lot of numbness, tingling and burning sensations when I first started taking amitriptyline, which...
I find amitriptyline reduces my pain a lot - I just take a low dose - 10mg in the evenings. It also helps my sleep. I do still get pains if I...
From all of the above, not just physical. But my worst PEM is from physical and social activity. Sitting quietly studying is more manageable....
When I first got sick I didn't recognise PEM. My most obvious symptom was whenever I tried to do anything I felt unwell instantly. I got sick...
Ivabradine helps me very noticeably - it restores much of my cognitive function. I think it helps to get the blood circulating to my brain better....
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