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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 felt 'fluey' and my neck got extremely stiff. The next day I woke up and could not move - every single joint in my body had seized up. This was very...

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 out, what if you had a set of 'compulsory' questions that are necessary for the basic participation in the GWAS study (e.g. the symptom questions...

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 be shared with researchers, unless it's anonymised data. As far as I understand, medical records contain codes information which can easily be...

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, to really raise awareness and legitimacy for ME. Perhaps rhetoric along the lines of 'it's time the whole country takes this disease seriously'...

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 is important. There is a lot of public fear about modern genetic technologies, and lots of people won't know what the difference is between a GWAS...

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 documentary evidence of their diagnosis along with the questionnaires? [Edited to add this question: and if so, will you add a function to upload copies...

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 sceptics out there of the veracity of ME and the value in studying it from a biomedical perspective. I suppose this is why I am very in favour of...

Sorry - I misinterpreted the meaning of your original statement :) Yes I think many people will probably be recruited 'through the grapevine'. I hope that with grapevine recruiting and other strategies combined, that it will be possible to get the 20,000 needed.

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 organisations or online groups, and who might not tell people they have ME because of stigma. For the first 6 years of my illness I didn't engage with anyone...

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, and that the only way to reach them might be through AFME. There are probably more people in this category, than people would refuse to participate...

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 I thought 'hang on, I think I might have that!'. I asked my GP about it and lo and behold, I did. Now being treated with medication, my brain fog is...

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 downstairs to get a drink, forgetting why I went, going back upstairs with something I didn't need, remembering I need a drink, going back down to get one...

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 fatigue/sickness feelings are just under the surface ready to break out if I move too much, talk too much, or concentrate too much. But I don't get a sent of...

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 cellular stress in some patients. But I don't think this would show up clearly in the results because the first two times I donated to the Biobank...

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 lasted about a month. They were very strange, I even though I might have multiple sclerosis! I spoke to the doc and pharmacist about it, and they...

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 overdo things or over-use my muscles (over-use for me, which is not much activity!), but it's not as bad as it was without that amitriptyline. The one...

From all of the above, not just physical. But my worst PEM is from physical and social activity. Sitting quietly studying is more manageable. Moving, talking, too much sensory input, strong emotions, having to organise logistical things, all cause PEM for me. I will get PEM from studying too if...

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 from glandular fever, and my most obvious symptoms in the first few years were exercise intolerance and feeling like my glandular fever was back every...

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. I take 5mg in the morning and 5mg at night. It's the one thingt has made the most difference in my 10 years of living with ME.