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Thank you Trish. It does help a lot. I think what you and others have written have given me more clarity than I’ve really had over the past 4 years. Like you say, even surviving gives us symptoms. And I think I’ve understood now why it’s been so hard and painful trying to constantly be told to...

Thank you so much Wonko. Don’t be sorry, it’s not garbled at all. what you and others have written is so helpful and is very different from anything I had heard from anyone else before. It made me think last night about all the things I’ve been told by professionals and tried over the past 4...

This is exactly it. I can only speak from my experience and from the interviews I listened to on curable from other people using the app, as well as things I picked up during the PRINCE trial. In the app - they specifically have a bit all about education of “pain science” which they apply to...

But I don’t know what I actually can and can’t do. :( I don’t really know what helps people with severe M.E. I try to rest but am not getting any better as a result of that, and I cannot sit up much at all for years now. It’s getting harder and I am scared, and I don’t know what I could do to...

Are you sure this is graded exercise? Oh my god I feel like crying now. But I’ve been through GET on the PRINCE trial and it wasn’t like this.

Ok, so I’ve read some of these posts and am very confused, please can people clarify? I’m working with a physio at the moment. She is very nice. it’s an organisation that has been helping people with M.E for a while. However - she definitely is working with definitions of baseline. And people...

Emails mentions cfs in one

I’ve tried this app, still have it as I bought a years subscription when on offer and now cannot give it back, will post more when I can on details + screenshots. It’s ridiculous. Made me feel like my trauma was behind it. Also referenced lots of studies but forgot which ones.something about...

Yes. The shared sense of all of us together, who are all in this position with M.E. One day we will all get the answers we need and all of us will be able to get treatment. even if it is very hard until then, we will get there :) <3

And @rainy it makes me very sad to read how you’ve been feeling. It is a very hard burden to bear. Please know you’re not alone. There are lots of us, including me, who understand <3.

Oh rainy.. all of what you’ve said, I felt that 100% too. It has been so, so painful since the CCI issue came out and truthfully over the past months I did become suicidal over it...the whole process, the hopelessness, the anxiety, fearing that I would get worse if I didn’t do surgery, not...

Hi Grigor: https://www.s4me.info/threads/mepedia-articles-on-neck-surgery-for-me-cci-aai-chiari-stenosis-and-intracranial-hypertension.9818/page-2#post-187916 Just a note I didn’t get surgery - I didn’t get that far! I have severe M.E, and it caused me a lot of distress because I’m in the UK...

Thank you @Adrian, also I think the Guardian’s reply is just weird and they haven’t addressed any of your points.

I wish they would do the going away part. And yes it is like a cult, one that the NHS and many other healthcare systems have bought into completely.

It actually kept coming up as adverts on social media. It came up on insta a few times and I kept ignoring it because i only use Instagram to keep up to date with book releases and Harry Potter news and wanted nothing to do with it. Then it came up on Facebook. Then it came up on Instagram...

That’s surprising. It’s been a month since then.

Did you get a reply Trish? Personally I am happy if someone is studying this. I just want to know how they’re studying it and on what basis. Like a proper study. Because we do need more answers from proper research, and not theories. Until then, theories are taken as fact by some people, and...

No, it’s not like that, it’s on his website. http://www.chiarinsc.com/word/New patient form2xx.doc It’s got some of these things but a lot more. Some of these I can understand being on the questionnaire. Others i really cant. And in most of the categories, there are usually always one or two...

Yes I think you are right.

Somewhere in the booklet it says “your symptoms are real” But.. Elsewhere it says, “you have nothing to lose” And: “ Firstly, let’s begin by better understanding how the human body works. Our body consists of physical body parts (skeleton, skin, muscles, internal organs etc.) and body systems...