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I'm quite a chill person, and really the only time I experience huge amounts of stress is either dealing with the benefits people or when I have to see bps medics or sympathisers. They seem obsessed with at least offering some treatment, even if it's bad, but imagine how good it would be if the...

How awful, that they know it's bad enough to consult with lawyers, but yet they still won't put a stop to the harm it's all causing! I just don't understand how they can live with that, and then to also throw back the nonsense responses...

"expect things to happen then they do" I wish they didn't, but comments like this really hurt me deeply. I don't know about anyone else, but when i got sick i fully expected to get better. That was 22 years ago now, i was 15 years old, with the rest of my life ahead of me. I expected it would...

Perhaps an opportunity to highlight the lack of a yellow card system, or the like, for patients to report harms... If you refuse to colect data on harms in trials, and refuse to provice a system for patients to report harms, then the absense of reports of harms is really not the same as being...

I don't understand. He says folks are coming in saying they've got MS or Diabetes, but also says he can't get folks with other illnesses? Sure just take those folks blood and instead of putting them in the healthy category, put them in the other illness category... And have they asked ME...

I don't know if it's just in Scotland, but we have a thing called NHS SHARE ( https://www.registerforshare.org/ ) where you can sign up to agree to allow researchers access your anonymised coded data to see if you are suitible for their studies and then you get contacted to ask if you would...

I'm glad PG's better, and really hope it's true he is, and it's not just the LP tell everyone you're better / fake it till you make it... And while i do think he bears some responsability for what he posted, and I was very hurt by what he wrote, I also think the BMJ bear responsability as well...

Might be worth saving the testimonies on the twiter feed to compare to the research when it is published? I don't know how to do that though...

Please forgive my inability to remember specifics, but didn't someone, perhaps JohntheJack?, do a freedom of information request for some important PACE data but was denied it because no-one could access the data anymore... I think this is even the second paper released since then. Perhaps worth...

grateful thanks. Kx

I've gone from sleeping up to 18 hours a day to insomia (prob because of medication i've had to take since surgery last year.) On the rare occasion now that i do sleep through the night (like 6-8 hours continuous sleep), i wake up with what feels like sore lungs? And it feels like it used to...

Absolutely. I'd wait until the ME NICE guidance has been confirmed and we see they've not walked it back. But i would hope we wouldn't forget those still stuck in the MUS disaster, and continue to fight for them too.

Sorry for just throwing things into the convo, my brain fog is bad at the moment, but i really care about the outcome of this. Hoping the scraps of my thoughts might help someone who has a clearer head... Thinking about the new guidline's advice on therapists helping ME patients exercise but...

Do you think that even though the new NICE guideline sort of gives a backdoor enterence to this, that because the NICE guide also says clearly that exercise and CBT should not be given as curative treatments, that we could then complain if they were given? At the moment, we can't complain...

I'm glad the guideline is explicit against the deconditioning / false illness beliefs theory. (I was very releived to read this, and enjoyed imagining having those key sentences tattooed onto my body ;) ) But, i noticed about a year ago various medics i have had to see seemed to stop talking...

I'm not part of MEAction, i'm too ill. But ME Action have had a huge impact in Scotland in terms of getting the parliament to take it more seriously, and i'm sure they have played a huge part in SNP trying to be better for us as patients and trying to change things. Recently, because NICE is...

Here's my annotated version of what @DigitalDrifter posted... it's not perfect, there will be spelling errors, but it is 2am in the morning where I am and i'm unable to sleep so...

I'm sorry i cant read the long posts. My worry is that all the names mean so many different things to different people. CFS in UK means something different to people from Incline Village in America, to folks at the CDC, to folks in Tapenui in NZ. In the UK for the last 15 years or so, most...

@Dolphin CNN have a youtube page. I don't think you can watch whole shows but they have lots of long (10mins ish) clips, including ones by Cuomo. Or if you know the name of who he's interviewing, and type them both into youtube sometimes you get lucky and someone has uploaded the clip. Hope that...

In Scotland NICE is less important and not something Doctors have to follow (Although many do, as it's often quite helpful for other illnesses.) But for ME the document that has more power would be the Scottish Good Practice Statement on ME-CFS. If a dr is saying that ME/CFS is no-longer...