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@Michiel Tack it is very definitely a good thing you wrote about it! It was a much needed post and I’m also glad you edited the ME-pedia page (from what I read many months ago, it was not good at all before). I’m not saying to delete anything you already wrote. I’m just saying, an additional...

Thank you very much, I am very open to hugs. :) :)

To everyone reading, I want to say I’m very sorry for my paragraphs in my earlier posts, it’s been pointed out quite rightly by an admin that my paragraph lengths were too long, and many with M.E will struggle. I certainly understand that and should have known better. Over the past two years...

Yes indeed. I did think along those lines, which is what I was trying to explain in my posts :) Yes please. “The clinical picture of CCI is quite different from ME/CFS” would be better. However I think it is also equally important to point out in this context that neck pain and many of the...

@Michiel Tack i just edited my above post as I wasn’t sure I was explaining myself properly. Yes I think the confusion comes from the fact that you wrote the symptoms of both are clearly different. Thats the sentence I talked about and that’s where my worries came in - as I took it to mean, well...

Hi @Michiel Tack sorry I didn’t word it right, regarding the ME-pedia page, the bit I meant was when you wrote “For some patients, this might be the first source they read that indicates there is currently no scientific connection between ME and CCI, that fusion surgery has severe and common...

@Michiel Tack thank you for your reply. I just want to address one point, that is: you wanted to write a resource that mentions that the symptoms of M.E are very different to CCI (listing symptoms of CCI). I think you should be aware when you say this, that it may actually backfire and have the...

I agree with this. I’m just wading in to this thread as someone who was really affected by Jen Brea’s recent articles on CCI (written in the medium), which were then widely disseminated throughout the ME action sites. I think both she and Jeff, and I’m sorry to call them out by name but I really...

Ah! What does GWAS stand for? That definitely sounds like a better way of providing data - visiting severely ill people in their homes. Edit: brain fog so I got confused. Just editing the part below. I used to think the UK biobank and the ME/CFS biobank were part of the same thing. Does the...

Thank you Trish. I do wonder then (and I’m sure this has been talked about already, sorry I just can’t read/understand all the replies),1) could it be the case that some of the people reporting M.E/CFS in the UK biobank may be misdiagnosed or not reporting as accurately as could be done if...

Hi, please bear with me as I have severe M.E and struggle a lot cognitively (despite having a maths & physics PhD background.. makes me very sad), although have tried to follow parts of this. Is it the case that @Chris Ponting is a member of the UK biobank? And his data does not support the...

In terms of sleep, I haven’t read all the posts, so sorry if what I’m saying is not relevant. but in my view sleep is directly linked to the illness. My sleep was fine until I became unwell with M.E. When my m.e becomes worse due to relapse, then, as a direct consequence; my sleep is often...

Hi Jonathan Edwards, @Jonathan Edwards I have severe M.E and live in south London, my mum has functional neurological disorder and is my carer and struggles greatly. I have had M.E for 4 years now and have had very little in the way of help (and the “help” I did have was disastrous - I was on...

Yay thank you so much! Will definitely try to Watch the video conferences :)

Thank you. I hadn’t read that latest twitter post, I don’t go on twitter as I find it too overwhelming but occasionally go to check his posts. But I also meant whether they had managed to find anything yet, any preliminary results, or are they still in the imaging only stage? And when they...

Hello Robin Durham, I was wondering if you there is an update on how Michael Van Elzakker is doing / if there’s any updates to how the study is? Since reading his two papers I’ve been so excited (not good for M.E, I know! :p). I’ve read a lot of research papers but reading his papers on the...

Hi, Of course, that is why I asked first :) Ok :) I am happy to send him a private message is Jaime doesn’t respond here in a couple of days. Just let me know.

I too would like to know this. (I’m new to this forum but decided to create an account for this..) I am very happy that a potential biomarker has been found, but i too wonder if the team had been able to do some of the things Sasha mentions, then Some of the “ scientists” from the SMC and...