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It seems nobody else was either; perhaps a useful mechanism for control or exertion of influence? I was struck by the descriptions of it as "duplicative" of processes in DHSC. Just an extra layer of people with influence giving them a sphere to work with?

Still shielding at home, alone, since March 2020. Only totally essential contact and masked where possible. Unfortunately I got covid straight away and was already infected trying to get set up to shield in 2020. I am now too sick to go for walks as covid made my ME/CFS severe again - walks...

Sean I think you would have felt worse by now if there was a problem? I don't think I have any more info (I never got put on the meds but I'm not up to date with appointments anymore due to covid and my worsened ME/CFS from covid). Just some stuff I read online of a speculative nature that I...

I thought statins were known to make ME/CFS worse? In fact a doctor was going to prescribe me cholesterol lowering medication. She was very good. I told her I was worried about it making ME/CFS worse. She shocked me by telling me that she had seen patients with my condition deteriorate on...

Thank you for writing this post. I really relate to this and exactly describes my experience as well. I feel less alone reading this and some other responses here. Love to all. x

There is not enough understanding of the point that there is often a conflation between "autism" and co-occuring conditions. People want to treat the co-occuring conditions that are causing various problems with functionality. But autism itself is not eg epilepsy or developmental delay. To the...

Is anyone planning on doing updates on the inquest or is the only way to follow it by emailing the address to ask for a link? Has anyone done this? I would like to follow but not sure how to do it and would appreciate it if anyone knows that someone is doing summaries. I hope this helps the...

Thanks for the laugh, @Andy! I do hope we get a sterilizing vaccine in my lifetime, in all seriousness. I can't afford to get it again so I am still shielding or whatever we might want to call that now! If anyone has any good or hopeful news, I'd love to hear it!

For me the main problem is that PEM is not under the main symptoms on page 1. I have no idea how this happened. None of the statements are a description of PEM. The main problem as I see it is that nobody understands the characteristic symptom of the disease which is key to what it involves...

I have been unable to follow some of this; is anything happening/is there any movement? Is it just more delay or is it saying the review will stay up? (Is there a difference at this point)? xx Edit: I had not seen this, but am still wondering what people think will happen/what the upshot is

I had to redo my sample as it had not been extracted properly apparently. But i sent it off a while ago and it was received. Should I be worried that I never got a further correspondence saying it was okay and has been extracted successfully? Sorry if this is the wrong thread. Thanks in advance...

Is there any hope of eg the charities flagging this issue in their materials to put pressure on NHS England to change the website before whenever it was supposed to be in 2024 that they are making a change?

Who at NHS England will be responsible for the content of this? They have not been good on various matters re: the pandemic, and SW is on the board now. Additionally will the NHS website ever be updated appropriately in line with the actual content of the NICE guidance? :( Is this what is...

I feel like in the UK they never acknowledged this as part of LC officially? (Unlike in the US, where they did.)

EDIT: Janet Dafoe: "The director of Dr Tedros’ office just called me. Ron and I spoke with her at length. She is lovely! We were able to tell her a lot of things and Ron offered to work with WHO like he did in the past and she was just really interested in all of it. Tedros will follow up soon"

I am a bit lost. Is that what is happening? If so, what?? Can someone explain; I am really sorry. :(

As far as I was aware there isn't anything that "CBT" actually is, and that pretty much anything can be called "CBT"?

Thank-you for posting this. I have no words at present!

Anecdotally I have found CoQ10 to be helpful. It didn't do anything when I tried it at lower doses; 800 mg per day was what I used. I now take ubiqinol instead of the regular ones (ubiqionone) and take 200mg of that daily. I find if I stop my chest pain comes back; it really appeared to help...