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Very interested in replies as i also have to option for contact with someone fitting 2b

:eek::(

Thank you so much for all the hard work over many years that you have put in Suzy @Dx Revision Watch it scares me to think where we would have been without it, you have made a difference to the lives of millions, and it scares me where we will be when you take your very well earned retirement...

thank you both

I told somebody yesterday (when they had classic covid symptoms but test came back negative, that the swab testing for active covid 19 in the uk isnt 100% reliable so they could still have it, and that the test they use has a significant false negative rate. They responded as if i were from the...

https://www.disabilityrightsuk.org/news/2020/august/ground-breaking-public-consultation-proposals-better-benefits-system Sorry no energy too foggy to explain what link contains perhaps someone else could do that pls?

In the Diff.MS from ME study.... what do the M & SD stand for? is it Mean & standard deviation? I get befuddled - does n=120 vs 269 mean there were 120 MS patients responding & 269 PwME? If so then I am too foggy & was never good at maths.... can someone explain how you work out the comparison...

That sounds really good @Hutan :)

Completely agree. As others mentioned up thread happens for PArkinsons patients etc (sorry dont have the energy to scan through to quote. Yes i'm afraid I fell into this category - to my eternal shame. Hence my having such difficulty when it happend to me... Needless to say i changed my thinking...

Thats fascinating @Shinygleamy because I'm aware of someone who saw a health psychologist who had the exact opposite experience, i'm so pleased you had a good one. But it brings me back to my point that the type of therapy/counselling/psychology etc isnt the main point, but rather the belief...

I dont disagree @Snowdrop I didnt say it applied to lots of people or that CBT was the most efficacious way to deal with it. I possibly didnt word that very well. I am no particular fan of CBT, quite the reverse. - Personally i detest it because i was badly harmed by the whole 'positive...

my bolding All the above CBT may have value when you are struggling with thoughts/beliefs that are not rational/logical, leading to unhelpful behaviours. PwME are just as likely to suffer from such ideas as anybody else and they can make your life miserable... For example 'being ill is...

Yes that is troubling to me too, thats a massive increase in risk. But i am not a scientist can someone, perhaps @Jonathan Edwards peruse the actual study to check if the conclusions are warranted from the actual data. I reduced my dose of PPI recently because of the increased risk of...

my thoughts entirely I hope you will. I feel a sense of outrage at the patronising nature of the response "i hope that answers some of your concerns" Ewww! :sick: I cant stand it when they start to 'educate' people who clearly are very well aware, as if they were entirely new to the field...

How utterly absurd. Is Scotland not covers by NICE or the DOH?

No, and it actually makes me quite cross that people who clearly do not understand ME think they can go around on twitter telling people what it isnt - telling people what PwME do not suffer from. precisely This. Every word of it. I am trying to avoid talking about this other than on here...

yes, intensely uncomfortable not painful. Its one of those symptoms i dont mention because the others are worse and it also tends to invoke the disguised (or indeed overt) eye roll from the doc.

"evidenced based behavioural treatments"... isnt that an oxymoron?

yes mine too, i used to describe it as 'my extremities are full of diet coke', similar to pins n needles but different

Eww! :sick: