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For me, my orthostatic intolerance contributes to my PEM, and when I am in PEM my orthostatic intolerance is worse (heart rate more spiky). I have found that treating my orthostatic intolerance has reduced the number and severity of crashes, but I still get PEM from physical activity and I can...

https://www.sciencedirect.com/science/article/pii/S0889159119307627

The full paper is up now - just read it!

Hi, I know this post is from a while ago but just wanted to say that I notice similar patterns in my HR, although I am much less active than you. I have pretty much no exercise tolerance, so something like going up the stairs too many times in one day, doing a little housework, etc. will...

Also maybe see if one of those BBC show that focus on new technologies etc. would do a feature? Like 'Click' or ... I want to say Panorama but I'm not sure whether that's the show I'm thinking of...

I got recruited into the UK ME/CFS Biobank that way. They asked my GP practice to send a letter out to the patients on their register with an ME/CFS diagnosis But that was before GDPR - not sure whether they are still allowed to target patients in this way. I wasn't engaged with the patient...

Thank you for sharing your thoughts. The thing I feel most strongly about, as a patient, is how unethical it is that current treatments (CBT, GET and even the form of pacing taught in NHS ME clinics) are based on educating us about a model of disease that has no scientific basis. As a patient...

I saw this today, in case it is of interest to anyone? It would be good to have representatives from the ME community involved. Get involved in NHS England Genomics, NHS Digital work, and vaccination services by applying for Patient and Public Voice (PPV) positions. Various deadlines in...

Ok, thank you for your reply!

Thank you for this - I was wondering about whether it would be useful to include relatives who both/all have ME to see whether they all have the same mutations associated with disease? Do you think there will be any attempt in this first big GWAS study (if funded!) to identify samples from...