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Yep!

Hi! i'm in that slack - just joined the autoimmune section because i was bored of people waiting to return to 'normal' when we never will. Hope to see you there. (ive got same photo)

ive not read further through the posts than your post but as a (highly suspected) covid patient myself who is struggling to recover i want to explain a bit more about our experiences. I agree that people might not realise a serious virus can take time to recover from - having M.E as well i am...

A study out of Germany recently seemed to suggest that children can carry the virus and transmit it at the same rate as adults they are generally less ill with symptoms though. We believe we contracted it in our household from my daughters school - she only had two days of very mild symptoms...

It does sound, like MCAS from your symptoms. Going to the GP would most likely be completely pointless, as explained by others. I have to trvel to see a MCAS specialist within UK, but luckily my GP then prescribes what she suggests to them. You could try a home remedy approach first to see if...

Oh wow - amazing news!

Thanks Andy and Ron, and most of all Dr Montoya - A very interesting and heartwarming interview. Shame there was no time for my question, but i will keep on asking it to everyone in the hope that one day someone, somewhere, takes an interest in PWME with MCAS. Also a little bit of something...

Thanks! i didnt even know the Science Library was a thing - going to get lost in there for a few weeks now.

A place on the site or a sticky with ll these links could be a useful resource @Andy ? otherwise they just get lost in the middle of threads.

40 years and we are only just getting back to this?! I'm enjoying the delve into the past and the desire for patients now to understand the history of the disease and the failings by the medical community that patients on this forum are showing. @Nasim Marie Jafry posts on the nomenclature of...

sorry this quote looks too out of context now, and too unwell to go back and retrieve the full quote, but it was in relation to MCAS. The fact that nobody in the research community talks about it is what is so worrying when so many of us have this issue. I know when i asked Ron Davis was aware...

Totally off the wall question - anyone have any idea if MVP is related to other heart valve issues? i have a MVP with a mild regurgitation, but also had a PDA which was tied at age 5. Im presuming coincidental, but you never know... @Jonathan Edwards what do you think of the anecdotal...

Yes, i am aware there are currently no known genetics for EDSlll. The guidelines I quoted are up to date clinical guidelines, presumably compiled by many Drs who specialise in this area? they are not made up by wishful; thinking patients. In terms of 'correct specialists, what i am referring to...

I would like to discuss further your use of lax joints and repeated references to pain. Many people with EDSlll do not merely experience lax joints and pain - that is not the issue. In fact i do not have significant pain at all. The issue is that if it is a connective tissue disease then the...

Anecdotally more than one M.E Dr reports up to a 1/3 of patients have co morbid hypermobility or EDS3. I know its not a study, but these need to be done. A very large group of us have EDS, OI of some kind and then usually MCAS as well. Some of these co morbid conditions can have symptoms...

This is a fantastic idea. I hope they have an effective campaign as well, not just a petition. My daughter missed her final year of school due to illness and also had no special help for exams - she either turned up or didnt. I had severe M.E hthen and couldnt drive her to school fr exams...

King Coffey and the Butthole surfers Butthole theme song come to mind

I have ticked a number of the different types pf pain, joints, stabbing, background ache, painful skin lymph nodes, not sure if any else, but the problem is i would generally consider myself to be one of those with M.E who doesn't really have pain in the M.E sense of the word, which means the...

I didn't like to say...

Yes, here it is, the Lipkin study https://www.mailman.columbia.edu/public-health-now/news/scientists-discover-robust-evidence-chronic-fatigue-syndrome-biological