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The fact that this is a preprint, data taken from small cohorts, and other potential methodological issues aside - this paper caught my eye because I've noted amino acid metabolism alterations as suggested findings in a few different studies now... My urine urea output is about 50 % of the...

Ah I've been waiting for this study to be published. I was prescribed Pyridostigmine last year and didn't notice any of the side effects listed on the leaflet, but when I tried to increase my dose from 15 to 30 mg my heart went nuts. Paramedic had to come, and the ECG trace was all over the...

Can't say for sure that it's the same as what I have but I have pots and I take medication to constrict my veins (Midodrine) which does help me with this sensation. Do you also have orthostatic Intolerance? For me the peripheral dilation leads to blood pooling when upright and makes me feel...

I get approximately £113 a week ESA. The exact rates are on the gov.uk website. It's absolutely not enough to live on. I have to combine income from a number of sources (PIP, ESA, student finance, savings, husband's income, discounts such as disabled travel cards etc. to get by).

No sorry I accidentally posted in the wrong thread - it was supposed to be a comment on the NHS report on improving clinical care in neurological disorders. I'm really sorry but I don't know how to move it.

I e-mailed the department that produced the report featured further down the web page to ask why they didn't mention ME in the report, considering it's so common and there are serious issues with the standard of care. They wrote back to say that there are 'no plans to recategorise ME as a...

Oh thank you Ryan, I will check it out!

Hi @Ryan31337 Thank you very much for your reply, and interesting to hear that you also have very reliable 'viral' symptoms as part of your PEM. I'm not convinced there is viral reactivation going on either - perhaps more of an immune response. I'm glad to hear the pyridostigmine is helping...

Hi everyone, I am wondering whether anybody who has viral onset (especially mononucleosis)ME and POTS had tried Midodrine, and if so whether you would be willing to share your experience of it? I ask because I have been trying it recently, and I am finding that although it helps a lot with my...

So according to this, people with ME who meets POTS criteria should be diagnosed as POTS plus, and those who don't meet POTS criteria but who have orthostatic intolerance, should be diagnosed as PSWT plus?

Thank you - I wasn't aware of this. This is good to know.

Thanks, that's good to know!

For medical education I would prefer charities put together, on collaboration with scientists and expert clinicians, a CPD accredited online learning module on ME for doctors, that is scientifically balanced and credible. This would be much more accessible and useful to doctors who are very...

Hmmm... this hypothesis doesn't seem to match my experience very well either. I didn't have an unusual amount of antibiotics growing up. The ME came on suddenly after a virus, and I had no gut symptoms preceding or associated with that. I developed gastrointestinal issues after the ME took hold...

Unpopular opinion but I actually prefer the term SEID over ME or ME/CFS. Because there is such a long history of stigma attached to the latter terms. It might not be perfect, but it's a descriptor. We do have a systemic intolerance to exertion. I could tell someone I have SEID without having...

Thanks! He used the term mitochondrial myopathy but it was a small sample size. 22 patients with a clinical diagnosis of mitochondrial myopathy, but only 3 of them had confirmatory genetic mutation analysis I believe, so it was 'clinically suspected' based on the fact that their iCPET profiles...

Thank you for the suggestion. If my current new medication trial doesn't help (Midodrine) then I will discuss this with GP. I found it interesting that Systrom has found impaired systemic oxygen extraction in ME patients, which he reckons can be caused by mitochondrial myopathy in some people.

This is very interesting. When I crash my breathing changes - it is like big gasps followed by very fast and hard expirations. Like someone would breathe if they had just run up a steep hill very fast and were very unfit. Except I could have just been sitting in bed reading when it comes on, so...

I don't know whether this is the same as what you are getting, but when I go out in my wheelchair in the winter my kneecaps can get very cold because sitting in the wheelchair they are sticking out, unlike when walking. They stay cold for hours after I get inside in the warm, unless I put a hot...

I feel your pain, as a fellow lefty.