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this is a really good idea It would also act as way of comparing ME subtypes and demonstrate fluctuations over time / life times between patients. Yes. this would be really helpful as I can speak quite fluently, but am quite forgetful now, whereas two friends have a lot of word finding issues...

Bolding mine What transpired seems to be the opposite. My reading of this that it was to be a co production, foregrounding the patient experience, identifying gaps in provision and bridging the gap between clinicians and patients to identify how to resolve these gaps and meet unmet needs. (To...

Thank you for sharing these comments @bobbler they really resonated with me. I have found myself thinking about this all morning, as they have provoked some very strong feelings, but am not sure that this is the most appropriate place to share them. Perhaps we should have a members only thread...

This sounds like a really great proposal @Trish I use a bullet journal and there seems a large chronic illness subsection of that community I use a monthly tracker and include a sleep tracker and boxes for visible score, mood, pain, fatigue (the latter on a 1-5 numerical score where 1 = normal...

Yes, exactly. We need some way of communicating that awful reality. Even talking to people like our MP, who is really supportive and we have been talking to for over six years, still didn't quite understand how much I am impacted, but using this scale and explaining what 30% capacity looks...

I agree, it doesn't entirely capture my reality, but find it is useful to be able to say I have about 30% functional capacity on a standardised scale. It gives some idea what that looks like. I have used it for PIP and when talking to our MP - it gives a broad strokes pen portrait, at least -...

I wasn't aware that the MEA produced a disability scale. I use the Functional Ability Scale that Action for ME produced a lot https://www.actionforme.org.uk/uploads/pdfs/functional-ability-scale.pdf

This. Also much screaming at articles when I read about "dealing with worry" and get the super helpful advice to give yourself 15mins and then tell yourself you are going to sleep and will worry about it later. Where is the off button for that?! I have practiced mindfulness for 13 years...

THIS. This really gets to me; other people being able to make choices that affect our lives and have no consequences for them. Worse, that this happens over and over to millions of people. I like the idea of "nothing about us without us" as there needs to be a collective way of saying...

Not an ME/CFS book but The Long Covid Handbook by Danny Altmann and Gez Medinger has some of the history of ME, covers management strategies and has good chapters on acceptance and on mental health with these illnesses. I found it incredibly helpful and refer to it a lot (I also have Long Covid)

This. I find this a very bitter pill to swallow. It makes me so very angry that my life has and choices have been taken away because of this hateful, patient blaming approach To add further insuIt to injury, we have to learn how to accept the unacceptable and unjust of diminished lives and...

I don't doubt the S4ME squad, if anyone has the spoons to write, I'm sure it will be polite and factually accurate. I am however deeply cynical as to how any message will be interpreted and how our words might be potentially used against us. He has form, after all.

While justified, would this be playing into his victim persona and persecution complex about us vexatious, militant patient activists?

Moved post Slightly off topic - apologies to the mods - but an article below was interesting too: https://thecritic.co.uk/the-disingenuous-anti-vax-blame-game/ The disingenuous anti-vax blame game - People have short memories about the MMR scare I wasn't aware that Richard Horton published...

I find i can't get close enough to the worktop with a high stool, so end up at a weird angle and keep having to get up to the cooker, sink etc. I have low stool I can sink onto while waiting for thing to boil, cook etc.. which works for me.

I claim my prize; IBS is on that list I've had CBT for my IBS on a group course. By the last session we had stopped taking it seriously and had broken out the sarcasm. Back in the real world, I saw a dietitian privately as the NHS one was utterly clueless and she introduced me to the low...

I was due an ESA reassessment in 2021 it magically got extended, without telling me, but they couldn't tell me how long for. When my MPs office asked, and I was finally given (eventually) a review date at the end of May. When it never arrived, and the the DWP were again contacted, they said "it...

Random thought: The government NEVER move this fast; If they have produced a response to the Work Capability Assessment: Activities and Descriptors Consultation in less than a month, they they were already writing it before the consultation closed, weren't they? And that means they knew exactly...

This. I was mild-moderate until the DWP repeatedly told me I was fit for work - having had to leave my career due to severe health issues, even before I got diagnosed with ME - and I got pushed into part time work. That lasted 13 months before I was physically and mentally destroyed and became...

This is absolutely insane.