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I'm hoping the NICE guidelines might move things in the right direction, but it will still leave us with a long way to go no matter what. Realistically, i don't think people like Crawley will go. Shuffled sideways eventually is probably the best we can hope for. Otherwise there would be an...

All of us here do. I just get twitchy....seen so many people demanding more care and treatment without specifying they mean they want treatments that actually help and not more of the same. Then being upset and annoyed when they get what they asked for.....

:thumbup:. Brilliant!

They would - but only with the right training and expertise - which I am sure is what you're saying @adambeyoncelowe. Members of my family attend assorted specialist clinics and the nurses are specialist nurses and a great help. If the nurses were to be trained to current cfs clinic...

If done responsibly - i.e. not feeding people's fear and panic- then I would view it as timely information rather than cashing in. The tone would have to be carefully judged - in a way that was what I was thinking about in thread about reaching out to help those struggling with isolation...

Definitely. We know that many have suffered ongoing problems post viral infection. How many of those will develop ME and how many will end up suffering further at the hands of IAPT and the BPSers?

Absolutely. Me too, murder as we didn't get on! Plus the whole family shared one bathroom, that kinda makes it tricky too. Some people have no idea just how privileged they are.

Yep, mine too @Arnie Pye. If you were screaming then you were breathing and would probably be fine.

Agreed. Bad days and worse days is more accurate for many rather than good days and bad days. Then at the very severe end of the scale there really isn't much by way of fluctuations.

Yes, there booklet on applying for ESA gives good advice on explaining the fluctuating nature of the condition to the DWP. Without that I'm not sure I would have been able to get my case across & be awarded the benefit. It would be wonderful to see the flip side of this - where the NHS start...

That would be good and it's certainly something to quote but in my experience it's fairly arbitrary which piece of advice or information medics choose to believe. Certainly no harm in having another reference to throw at them.

Wow. It took me a couple of goes to get my head around the title. Words for the sake of words. I can't be bothered. I'll wait till a few more reviews have been done and then read the meta analysis on that thanks.

I can't say I've seen this before, but then I sometimes wonder if the left hand even knows the right hand exists ket alone what it gets up to with NHS England & NiCE etc. They say: I guess this is because they don't understand that, like an iceberg, what they see and understand about ME is...

Yep. I used exercise regularly and treat myself to a massage every month or so. Since I got sick massages are just far too much even if they're lovely at the time, I'm bedbound feeling vile for weeks after. . I have tried the Perrin technique, though not at this clinic. It made me much, much...

Yes, there's that too. A lot of patients are simply too scared to end up making the relationship even worse or being left in limbo without a GP. It not just about capacity. It's also about fear. For so many their diagnosis came with the unwelcome realization that they are now less than...

Just reported on SkyNews - apparently NHS official advice is, for Covid 19, take paracetamol not ibuprofen unless otherwise advised by a doctor.

It's not happened to me person, but as far as I know if a practice removes you from their list, there's not a lot you can do. Other practices are not obliged to take you on and if you have a reputation as a troublemaker then they may be less likely too. Even if your practice doesn't strike you...

And it's not even April Fool's day. Are they taking the......?

Yep. There's the odd occasion when bingo! I feel "normal". It always seems to occur at about 11pm and I feel fantastic just when I'm supposed to be going to sleep.

Me too. Of course if you've gone into remission while having LP or Perrin then others have a vested interest in getting your story out there. Especially if you're high profile. If you want to retract later....they won't be so keen to out your comments on their websites and in their...