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Yes, please! Only, if you have the time and energy though @Sly Saint.

It's very difficult. I often think that our descriptions of how having ME/CFS feels can make the condition sound psychological. I guess that's true of any conditions where you talk about how it feels subjectively. I agree with @ScottTriGuy too. We have an uphill battle in that not on!y are we...

Some of the issues I have, as someone who has been sick a long time now - Initially, I had some real unpleasantness from people because of their perception of the illness. I was caught in a Catch 22 in that, because I now was diagnosed with it, I was no longer a credible witness. So I...

Forgive my cynicism, but they are an easier sell for what's listed in the discussion section. Younger people are more likely to be demanding return to careers, working full time, having families.

Bolding mine. This whole thing is semantics. Use plain, clear English and be entirely unambiguous with the patient. Don't make vague optimistic half promises. Personal empowerment? Patronizing bullshit. As for the bit in bold -..... that might be true for some, but certainly not for many...

I had a brief look at the first few questions. The questions are asked in such a way that the survey cannot capture my experiences with neurology. It seems to assume that, if you saw a neurologist, they played some part in diagnosis. Not in my case. Also asked about what information you were...

If I remember the conversation when this last came up correctly, there may have been a suspicion at the time that some unaffected local took advantage of the situation in the hopes of compensation of some sort. However, in my eyes, just because that is a possibility it shouldn't be used to...

A member of my family was on the receiving end of this type of crap many, many decades ago. It involved thinking positively, avoiding certain foods ..... and coming off medication for a serious and debilitating medical condition. The argument being a) as a demonstration of commitment and faith...

I should have it around someplace. There were various tests repeated, but they were about 19 years or so ago. I started the supplements after I was diagnosed and while still working. I was in a bit of a mess and it's possible if I'd been further down the line and had stopped work, learned to...

I was found to have low omega 3 & 6. I have been supplementing using the products recommended by the specialist. I can't honestly say I have noticed any difference/ improvement. Maybe I'd be even worse without the supplements?

:banghead::banghead::banghead: Does it not occur to these people that, regardless of your personality type, anyone who has worked hard to establish a career, is paying a mortgage, has dependants and both personal and professional obligations and then becomes sick with an illness where very few...

This is a bit off topic, but same theme - Did you know that with the advent of the new "paperless" driving licences that your driving licence is now connected with your national insurance number? A friend is hiring a car abroad and they will want to see proof that there are no endorsements on...

Yep and it's deliberate. They want claimants to feel like they have absolutely no rights. In exchange for having the temerity to apply for benefits, you forfeit your rights to be treated honestly, fairly and without intimidation, soon you'll have to forfeit your rights to any privacy as the...

Because being video recorded when you are ill, stressed and vulnerable is more intimidating? Especially, when you aren't given a choice. Also it provides great training material, the better to create a hostile environment for an assessee. I can picture them reviewing the recordings and...

Welcome @Naomi10. It's great to have you here :).

Exactly - part of the feedback loop is missing as they apparently have no mechanism in place to see what is effective and what's not and if something isn't effective is it because of implementation, or simply because it doesn't work. Given the anecdotal evidence from patients about harm caused...

Of course. You can PM me anytime. I don't claim any expertise or knowledge though.

As far as I know /have read the NICE guidelines are (when it suits) just guidelines and it is up to the clinician to use their best judgement. I guess from the clinician point of view, unless they've done something stupid, if it goes wrong and they've followed the guidelines then there's no...

That's amazing @BeautifulDay. I hope you recover soon from what sounds lime a mammoth task! Thanks for generously allowing us this free download window too.

Please excuse if this is completely irrelevant and you may have answered the issue elsewhere @Amw66 - in which case just ignore. The first thought that springs to my mind is what dose if hydrocortisone was she in and for how long. How long had she been off it and was she tapered off it...