NICE ME/CFS Guideline stakeholder scoping workshop, Fri 25th May 2018

Sue's absolutely right, it's critical patients are protected now, and scandalous that having admitted the present guidelines aren't fit for purpose that they are still left in place. Can they not see the absurdity, insanity of that?

 

I don't see that would work, the harm would then already be done, it needs to be a blanket ban on GET and CBT.

 

I know of someone who had aids and grab bars etc. around her home. Suddenly, the advice was that ME patients shouldn't have those, despite her being assessed as needing them in the first place.

So, instead of just leaving them, they showed up in a van and removed all the aids from her house, including her wheelchair. I believe she was told this was going to happen, but not given much notice.

The last I heard her husband was going to have to give up work, as without all the aids she couldn't cope on her own and they couldn't afford the equipment themselves.

These people have a lot to answer for.

 

Facebook post

 

Wow..talk about shooting ourselves in the foot

Is this proposed along with crystal healing aura cleansing and magic beans? I think I would prefer pottery in a MUS clinic and faking another GET session..isn’t this the thing where they aid “lymphatic draining” with massage ?

 

The trial they are talking about was discussed here, https://www.s4me.info/threads/can-p...-with-cfs-me-a-diagnostic-accuracy-study.351/

 

I had to reread the thread to jog my memory ...luckily on this occasion my memory about this is correct ...similar as my feelings about the credibility if the lightning process ...pure quackery and I can’t believe anybody would take this seriously as a diagnostic tool. Hopefully those on Facebook can counter this with something logical and rational.

 

I went to a Perrin sales pitch with Perrin himself when I'd been ill for about a year.
He thinks severe patients who 'lie on the floor in front of you' are attention seeking or hamming it up and if you don't take 8 Veg Epa pills a day then you 'don't want to get better'.

I have fairly strong opinions of my own about him too.

Oh, the 'Perrin points' he prods to diagnose ME patients are just pressure points, everybody hurts when they're prodded in those points.
He developed his technique by treating a long distance cyclist who was having back problems which 'cured his chronic fatigue' as a happy accident.
He genuinely seems to believe his own hype, but comes across as a snake oil salesman.

There should be no problem with NICE considering this 'treatment' there's no evidence base behind it and it can hardly be considered cost effective when patients have to go for weekly treatment for months on end. But I could be wrong, they might decide crystal healing and toad licking are cost effective treatments for ME, stranger things have happened.

 

Maybe some magic beans??

 

Well, i tried the Perrin technique with an osteopath, so, if I had a choice between the two, I'll take the toad licking!

....or perhaps the beans (but only the special gold ones).

 

I too had some Perrin massages. They were very nice , and relaxing, and the girl was lovely. She seemed as disappointed as I was that it didn’t make one jot of difference.

 

That sounds nice. That's not the effect it had on me though. Serious muscle weakness problems afterwards.

You were also supposed to apply alternating hot and cold ice packs to the spine. I ended lying on the kitchen floor unable to get up. I decided enough was enough.

 

Ice packs were never mentioned to me. Phew. Not hot packs either, but those might have been okay.

 

I do know 2 pwme whom.this helps.it is a cost benefit sum.as it is fatiguing afterwards . Both suffer from swollen lymph glands and it seems to help Not a cure more symptom relief.

 

I think it's only being considered for the diagnostic part of the guideline. However, I suspect NICE will go with something easy and accessible like the IoM criteria. CCC would be nice, but I'm not sure how easy it is for GPs.

 

I see they are recruiting for a double blind trial of Q10 + NADH in Barcelona: https://clinicaltrials.gov/ct2/show/NCT03186027