Search results

I’m horribly cynical, but why would I put my face and name to this campaign when it probably won’t work? Actually, I don’t want to put my face and name to things, I enjoy being a private citizen. When will this trend of showing “the reality of the illness” pass?

They’re always working on developments, they seem reasonable (and are also ill) even if they say they looked into it and x,y,z were the stumbling blocks….I think they’d be helpful.

I don’t know anything about trade secrets or patents, but I’d consider having a discussion with the Visible team, they seem decent people and might have looked into this, or not.

I’d reply but all I have is *sigh*

No money with new ME Delivery Plan https://archive.ph/a3iYo

Moved post I’ve seen a quote from Sonya Choudhry on socials saying we need funding alongside the plan.

Probably not. Isn’t it just a Trojan horse? I’d love to talk to some of the old RCP lot.

There is this “magical” thing you can use called honesty and empathy. Where you say “we just don’t know enough about it for me to suggest anything, I’m sorry, I understand you want an answer, I don’t have any” but that’s impossible for a doctor to say. It’s hard to know whether it’s more...

I think it was the stomach consultant, because you can’t ever bypass the stomach without it seizing up and being irreparably damaged according to him.

Yeah, that’s what we have to deal with isn’t it.

I’m so sorry for your loss x

It’s an anecdote for @Jonathan Edwards - well really for the Dr who insisted Maeve Boothby-O’Neil would have died in 8 months.

https://incarsafetycentre.co.uk/products/ez-on-harness You can buy this for £200 lying-down harness.

Dunelm January sale, but many cheaper imitations on Amazon you could check the reviews?

Thank you. This idea of a new authority to make awards, plus a new advocacy service with people from charities working as advocates or an advocate coaching a family member, is a massive extra layer of admin/employment. Puts me in mind of the fragmentation of social care where everything is a...

Just doing the survey. Strongly advise that someone else summarises its contents(I’m foggy) as it seems very clear what they want to do. A separate authority to issue payments (not DWP) and an advocacy system for claimants. Lots of “your idea of a “good life” your barriers/your wishes” if...

People laughed at Trump for suggesting using bleach to “cleanse” the body of Covid 19 yet these people get whole careers making even less medical sense of ME/CFS and LC “treatment”. I’m feeling there’s some “inflammation” in my body just hearing about this bunkum…

Not in the mood to read, but if we change ME/CFS and LC to HIV+ how horribly offensive would it be? Also, if we substitute with “spontaneous human combustion” how hilarious?

no not for certain, which may or may not increase the anxiety of those affected. https://www.bbc.co.uk/news/articles/cd9qjjj4zy5o

Why would an unprecedented pandemic caused by an escaped lab-manufactured killer virus which interrupted life for a few years around the globe, killing millions and leaving millions more with residual ill health for which there is no explanation or treatment, cause those unwell survivors...