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I am 'out'. I post repeatedly and stubbornly on fb about ME, never cfs, draw attention to research, advocacy etc. I get relatively little recognition which hurts/ annoys me, but I still do it. It is so much part of me and what i can/ can't do that I wouldn't make sense if it wasn't known. Over...

@arina83 Thank you for the link to the HEDGE study. I look forward to the finding of a genetic marker for hEDS so that there can be no disputing the diagnosis. It is a serious condition which affects many body systems and is only recently beginning to get the medical attention it deserves.

What an honest, raw, brave account. Feeling very moved. What a special man. So sorry at this news.

Well done @PhysiosforME. You are making a huge difference.

Epidemiologist from Zagreb on BBC news just announcing that levels in U.K. are accelerating, especially in south east. He is advocating more action soon or it will get worse fast. He has just been thanked. Seems to have some link with Uni of Edinburgh but was speaking from Zagreb.

There has been a surge in cases in daughter's very large primary school in a deprived tier 1 area with a lower covid rate than national average. They did well until the middle of the week before half term but since then, she with the rest of the senior management team has been working flat out...

And Germany.... https://www.bloomberg.com/news/articles/2020-10-28/germany-agrees-to-impose-toughest-restrictions-since-lockdown edit to add- schools stay open "GERMANY’S NEW RESTRICTIONS: Restaurants, bars, nightclubs and similar establishments will be closed All leisure facilities, such as...

Breathlessness has become a severe issue for me since about 2016, not so much in the earlier years of the illness. In fact in the several years before the illness took hold in 2007, I had become something of a gym bunny as well as doing yoga and tai chi classes. It was the fittest time of my...

A very significant symptom for me, that is breathlessness not air hunger. Too late to write now but I will try and get back to this thread in the next day or two. Very interesting.

No email so reregistered with link provided by Andy. Two emails within a minute with links to info about study but no link to a survey.

Attached is a survey sent out by Lipoedema UK requesting participation in a survey by University Hospital of Bruxelles on quality of life experienced by people with lipoedema. Quite a large study- over 5000 responses so far. i haven't had a chance to go through the survey yet- tomorrow's job...

@Jonathan Edwards Thank you for your reply. I do hear what you are saying and appreciate you engaging with the issue. It is difficult however, as a patient who has been told by two separate NHS Professors ( not the recognised 'experts' that I think you are referring to, but others who could...

There are 13/14 types of Ehlers Danlos, most of which are very rare, and all of which except hypermobile Ehlers Danlos have a genetic marker. Hypermobile Ehlers Danlos, also known as Ehlers Danlos 3, is the commonest type (about 1 in 5000 people) and, interestingly, is increasingly being...

@Jonathan Edwards I did not express myself very clearly so apologies. I should have said that rates of hypermobility are higher in those with lipoedema which has progressed to be more severe.(stage2/3) This is interesting in that, as you say, people generally get stiffer with age but, since...

I came across this talk by Dr Karen Herbst which basically looks at the distinguishing features between lipoedema and Dercums. Lots of detail about slightly differing symptoms. Also a fair bit of discussion on lipomas which may interest you @yME . About 20 minutes in, she talks about...

https://www.intechopen.com/books/adipose-tissue-an-update/lipedema-a-painful-adipose-tissue-disorder An article identifying lipoedema and Dercums as painful connective tissue disorders. I hope it might be of use to you in your immunology appt @yME. I sympathise with the increase in number of...

Interesting especially in showing the systemic effects of hypermobility Ehlers Danlos, that it's not just hypermobile joints but can affect all body systems.

I believe I have mast cell irritability, a doctor's diagnosis not mine. I am reluctant to call it a mast cell activation disorder because it seems that getting this diagnosis from an NHS doctor is almost impossible. Interestingly despite this, my GP accepted the diagnosis immediately because...

It was one of a series of 10 articles posted in 2012 in a brochure to celebrate 10 years since the SMC was formed. I tried to describe this in post #122 rather incoherently, I'm afraid. I am not sure I am any more coherent today so I will be quiet- but first say the first para from the quote by...

Written but not posted earlier. Ran out of steam but I hope this makes sense. Do we know when this rubbish was posted? It's just the same old story- aggressive patients, harassed researchers- the latter disputed and dealt with by the 2016 Upper Tribunal. It's all they have. But why would...