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Apologies, I did not mean to suggest that you, specifically were; I am extremely concerned about the FND mission creep. This. The FND diagnosis may well have legitimate and helpful uses in some instances. As we have both agreed, ME/CFS is not one of them and, as someone else has said it is on...

Thank you for the clarification @Jonathan Edwards and apologies for rushing to judgement. If this diagnosis is helpful to some people, does it lead to suitable treatment? My concern is when rehab is a hammer and everything is a nail and where FND is used as a full stop, not a comma and further...

I have just looked up this thread, and am physically shaking with anger at this whole FND approach. This. Questions need asking, very firmly. How did MEA decide that an FND researcher would be the best fit for this work? How is this allowed to continue? I have just seen this letter linked...

I have just looked up this thread, and am physically shaking with anger at this whole FND approach. This. Questions need asking, very firmly. How did MEA decide that an FND researcher would be the best fit for this work? How is this allowed to continue? I have just seen this letter linked...

I love your descriptions @Kitty I am stealing this; as it sounds like something a Victorian gentleman would say before slapping someone with a glove and challenging them to a duel "Damn you unplanned visitor, for you have caused me unspeakable payback - you shall answer for this!" Guess who...

Thanks @Hutan again, clarification appreciated. :thumbup:I am never quite sure how I come across so wasn't sure if this was helpful or a bit ranty!

Thanks for the clarification @Trish that is helpful and somewhat frustrating Quite. This seems to be a common problem. The DWP 's Back to Work plan is making the same mistake.

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?