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Apparently women have increased risk of voice loss from around age 40 anyway? Which would explain why absolutely nobody has ever looked into it.

It’s so annoying that we don’t even know if it’s the fatiguability of the muscles involved, or an autonomic thing, or a mucus/lack thereof thing. It’s observable, it’s easy to run a battery of tests to identify or exclude factors, but nobody has, have they? Do we know what causes it in MS? I’ve...

Does anyone know what the cause of voice problems in ME/CFS is? A long shot, I know. I have a lot of issues with my voice, many people have asked if I have MS as I sound like someone they know who does. Sometimes I have to talk through my nose to force some sound otherwise I’m just whispering...

I only like ME/CFS because it’s an easier search term online than “ME” which is a nightmare.

It was a bit disappointing so I wouldn’t bother searching it out. It was very “the whole system isn’t geared towards ME” very restrained and nothing explosive. I am hoping the 27th September brings something up about the need for systemic changes, I’m hoping there is a Prevention of Future...

Yes Dr Shenton gave written replies which were covered on the last day of the inquest hearing.

Yes when I was mild and still working, the only person who understood/had the same level of fatigue had HIV and wasn’t getting the right combination of drugs. After a lot of changes to find the right ones, he’s lived a near enough normal life and had a successful demanding career.

I’d like to know the answer. I often go by “how much money would you force yourself out of bed and jogging to x for” Some days I’d give it a go for £20k, others I would need to be offered £1million

It’s upwards of 6 million viewers, mainly over age 55, few under 25. It’s less populist/more cerebral than its rival on ITV, there are really only BBC, ITV and SKY if you’re watching at that time (or you want to watch cartoons!) it’s got prestige.

I meant to the media - we were discussing how Sophia M wasn’t mentioned in the coverage on Maeve.

Well then someone needs to get the word out that pwME keep dying because they can’t eat or drink, and that is unconscionable

She was at home when she died. She had been unable to eat or drink. When they broke down the door with the police to section her two years earlier, she was released after only a few weeks? on a ward, thanks to a tribunal or some kind. Obviously after that experience she crashed and never...

As I say, it doesn’t seem similar (on the surface) to Maeve’s story. And on the surface Maeve’s story is about lack of ME services and knowledge, and that she couldn’t eat, hospital “couldn’t” help so she died. Its really not coming across to the average person reading the press or seeing the...

I feel like the younger generation, many with LC have got the social media skills and savvy (clear messaging, strong case studies- not just ability to create a hashtag) plus the LC generation don’t have our war wounds. They all very obviously became unwell at the same time, after a virus. They...

I’m a bit consistent, except not always, but I am sometimes.

In my defence I’m very tired! Sorry both

Well done @JemPD its got a bit of a wave going!

People are already shocked that I don’t have a consultant. Or an annual review. By people, I mean friends with MS, or Cancer. Imagine if they knew that the care and support plan, which they have themselves, one of the major ME charities acknowledges thousands of pwME cannot get anyone medical to...

Psychology seems very paternalistic. BSP is in many ways abusive. The kind of hegemony which is smashed once people can form online communities, and easily speak to others who have the same issues, experiences and concerns. They really shouldn’t rush to psychologise patients.

Never any questions about “I tend to leave things half completed” “I do more than I intended, but less than I needed” “I usually stop myself before I’ve finished a task”