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Hi, this may sound like a random question on this thread, but it’s not.. Out of interest, is anyone aware of any current practicing UK Neurologists who have shown genuine interest and understanding of ME? I know there will be a long list of those who we wouldn’t suggest, and I want to keep it...

Are all the charities and F-ME on board for the publication with national media outlets lined up for press releases?

I’m almost certain it was a timeline mentioned on one of the Decode webinars, but I could obviously be wrong. To my simple mind though, 2 years, 5 years, it doesn’t fundamentally change that there’s no guarantee that Decode will find anything of any use, yet, everything seems to be pinned on...

You'll have to forgive me if this initiative doesn't leave me with any more hope and optimism than I had this morning tbh. Ok, it's scant on details, but, as with so much of what I've seen of late in the UK, all the eggs are in a DecodeME shaped basket (having had the previous batch of eggs in...

No, I think her son does, though.

Thanks, it did feel very much a long shot, but had to try. Could probably have been dealt with more sympathetically I feel, at least from my GP surgery, with whom I have had amazing service since getting ill. Perhaps I wasn’t my usual charming self, feeling like crap as I was , she did at...

Having got COVID just under 2 weeks ago, I tried speaking to 111 and my GP about getting anti-virals as I was crapping myself that I would be make much worse from the virus. A GP from my surgery (not my normal GP) told me in no uncertain terms that she was 99% sure I’d not get them. But, she...

I’m in shock at seeing such overt coordination of/between the charities.. Hopefully this will be something we see more of under the F-ME banner - can but hope.

If one could trust that a questionnaire/answers would not be twisted/misconstrued by those assessing an ME patient, perhaps some of the questionnaires available could have a place. However, as they can easily be used to suit a desired narrative, I'd say, they have no place. Having been required...

Interesting question. When I was diagnosed in 2020, the proximity of my first becoming ill to the flu vaccine received (it was 24 hours almost to the minute that I noted initially feeling unwell), was cited as the trigger for my ME. The doctor said that 10%-15% of the patients he diagnosed with...

Just seen someone on a Facebook group saying they have just been diagnosed and been told by their diagnosing doctor that they should push themselves and allow others to 'bully' them into doing more/getting out of bed. Looks like things still have such a long way to go! Folks on the group have...

The trouble I also have is working out whether something has any effect, or, whether I have just done a sterling job of resting for a period of time or have overdone it. Is one masking the other? There are so many moving parts to living with ME and what worked at one point may not work at...

I’ve tried various supplements, taken at different times of the day, none really seem to make any discernible difference to anything. The only thing I take that helps sleep is melatonin and phenergan taken not long before bed. Everything else..well, when I don’t take them for periods of time, I...

Seeing the use of the Chalder Fatigue Scale is enough for me to stop reading any further than the abstract.

I'd like to share some of that optimism, I guess I just don't understand how the PSP would achieve this or anything, as opposed to our charities/groups of charities, that could/should be making far faster decisions on what the research priorities should be - especially building on the back of...

I'm a bit late to this thread, but I've got a real grump on about the PSP and the survey - sorry if I'm going over ground covered. I've not yet completed the latest survey as it all seemed rather overwhelming for a patient with such limited energy - so many questions, too much to think about...

Err, yes, I was slightly concerned when I saw how involved AC was in the Purple Book after I had bought it..

I had a private appointment with him earlier this year and whilst he confirmed the prior diagnosis of ME, he also told me that there was a deconditioning theory with ME and that I should be aiming to walk 30 mins, twice a day. I stopped listening at that point and thought, I want my money back...

This is my local clinic (though have been on the waiting list for >18 months) and I'd heard rumours of the closure at the weekend from some who have been under the care of the OT, but hadn't seen anything confirmed. Sounds like folks are being referred to rheumatology at UCLH as an alternative.

The thing is, who is all this actually aimed at? It feels like PG and others get off on baiting sick people (now there's a mental image I didn't want), cos other than his chums who may share the same views, in the grand scheme of things, no-one gives a hoot about ME or us that suffer from it. Is...