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

Trish said:
The Chalder Fatigue Scale is just a list of 11 statements vaguely related to fatigue that you rate on a 2 or 4 point scale. I can't imagine anyone finding it long and arduous. Nonsensical idiotic and pointless I would agree with. I can't imagine why anyone would pay to use it. You just add up the score and get a meaningless number.
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I think if anyone has paid they should ask for a refund because the CFQ (not scale) is not fit for purpose in measuring fatigue and it certainly isn't a scale.
 
Alena Lerari said:
We had a clinical lead of one of the paediatric CFS/ME specialist services in our group. I will refer to them as they, to avoid he or she, since we are not disclosing :). When I brought up the issue of there not being aids and adaptations mentioned for the guideline, they went on to say that they hardly ever prescribe wheelchairs for children and many children come from GPs who prescribed wheelchairs while these children have (and I quote) "behavioural problems". They went on to say that it should only be specialist tertiary services that should be able to prescribe aids (or rather deny those as it happens).
They also said that the Trust does not want them admitting children for inpatient stays and that everything should be dealt with on an outpatient basis. However, as they deal with these children and they are the experts, they continue to admit the kids for inpatient stays anyway.
Other quotes include "it is very different for children...these children can be ill one day and run around the next" and "most children improve with the available treatments".
I am seriously concerned about "these people's" influence.
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I think you should name them so that parents are warned.

Last time QMUL or Barts (basically White) wrote a submission to NICE saying aids and adaptations should not be given to patients.
 
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
The Perrin Technique is one of the interventions being looked into by NICE for the new ME guidelines. Last year FORME funded a successful research trial on the diagnosis of ME using the Perrin Technique and we are passionate about this being available on the NHS so early diagnosis can be obtained by all ME sufferers.

If you would like to see the Perrin Technique diagnosis and/or treatment included in these guidelines and available on the NHS we encourage you to email cfsme@nice.org.uk to lend your support. Ideally before the consultation for the draft ME/CFS NICE guidelines begins on 21 June 2018.

Together we can help secure a better future for all.
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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.
 
Keela Too said:
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.
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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.
 
i think there may be symptom relief for some people I was having some sessions a year or so ago but they used to knock me out a lot and I was trying to keep working.

but the paper they are talking about only tested his diagnosis approach not the lymphatic drainage massage so the treatment offered isnt backed by evidence and shouldn't be up for consideration for the guidance until they obtain some
 
NelliePledge said:
i think there may be symptom relief for some people I was having some sessions a year or so ago but they used to knock me out a lot and I was trying to keep working.

but the paper they are talking about only tested his diagnosis approach not the lymphatic drainage massage so the treatment offered isnt backed by evidence and shouldn't be up for consideration for the guidance until they obtain some
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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.
 
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