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I take 3, all on prescription - Lidocaine patches, Paracetamol and Nortriptyline. I would not be able to write or use my phone without it now (especially the Lidocaine which has been a godsend, especially once I started being actually prescribed it on the NHS instead of having to buy it from...

Could you make it so we can choose more than one?

Yeah. Unfortunately starting from a few governments ago, when IAPT started rolling out, pretty much most mental health / talking support services have now been replaced by CBT, or by group therapy. Two people close to me had to discharge themselves because they were sent to group CBT therapy for...

Looked up Dr Husain and he has some connection to the PRINCE trial. (haven’t read his evidence yet). https://www.slam.nhs.uk/national-services/our-experts/dr-muj-husain/

Another idea: That psychological therapies: CBT is not linked to in page 12 (Gecko has already mentioned this), but also moved out of “Managing ME” 1.11 in the guidelines itself, because as you say, this is not about managing symptoms and the fact it’s there with orthostatic intolerance (which...

Yes. I think this is a very good idea.

Actually CBT is, because symptom management on page 12 which you refer to, then links to many other things, one of which is a section which has its own title: Psychological support: CBT 1.11.43 -1.11.50. Although only physical maintenance is talked about on page 12, there is later on a section...

Yes, could you copy this over to the 1.11 Management of ME thread, when you have time? I think it’s really important.

Yes there’s a section about psychological therapy / CBT 1.11.43 - 1.11.50. Therapists help develop the self management plan. We see physios/OTs when we want to introduce activity (edit although it also says refer those with severe/very severe ME to OTs/physios for management plans).

Just had a quick look at the MS guidelines. From my skim read, the only mention of CBT is this (under fatigue): “Consider mindfulness-based training, cognitive behavioural therapy or fatigue management for treating MS-related fatigue.” So, we seem to be a “special case” where CBT is concerned...

I don’t know where to put this but: Why can’t we just not have CBT anymore? Why is CBT and psychological therapy still playing such a huge role in our care (or even the main role, with a little bit of input with OT physio). Why can’t we see a doctor - one main doctor who will oversee our care...

Sorry, think my point should have been clearer. The reason why I said “normal environmental levels” is that even in situations when noise levels are not “high” or irritating to others, ie just normal conversation in a normally busy corridor, with me in enough proximity to the conversation, is...

Yes, I’ve had a similar issue even when I was in a separate side room. It was awful. In my case though, no one else even seemed to think it was an issue, when I was there.

I agree with what you’re saying. I have to admit I use noise and sound interchangeably - I always used to think of them as the same! When my mum is cleaning something in my room, I say “stop making noise!”. I think even the word noise could be used though, given, that we make clear that what we...

I’m near tears with relief and happiness. I can’t read it all yet but just read this part of severe ME (sorry it’s coming up strange when I copy and paste): “Be aware that people with severe or very severe ME/CFS may experience some of the following symptoms that significantly affect their...

I initially wrote this in another thread but moving it here as I think it makes more sense here. (Joan Crawford wrote about Jo Daniels misrepresenting CBT for ME.) Exactly. When I did CBT, I was always told it was CBT, never GET, but during our sessions I was told to increase the amount of...

I sent the dialogues for neglected illness videos - the Severe ME page of the website - to the doctors I’ve been dealing with (who have so far been causing much harm / stress to me). I asked them to watch the videos on that page including the hospital admission one. I was so glad and it was...

Yes! I think that’s the one I must’ve been thinking of. Is this related to the same Oxford Brookes survey and report? So there were two reports produced?

I think that although with ME action, we can’t point to any specific big things like how ME association has Charles Shepherd sitting on the NICE guideline, or ME research U.K. which helps with funding, it is still important that we have a charity that is making noise and raising awareness in the...

Yes that’s the one! So ME action didn’t have any involvement in that then. I’m not sure why I’ve been thinking all this time that they did. That was the one big thing I could think of, that I thought they had done in the U.K! Well, I am then very grateful to the ME Association and ME research...