Forward-ME Group Minutes - 8th May 2019

Dr Charles Shepherd drew attention to a video made by Oxford Hospitals NHS Trust about graded exercise, claiming it is OK
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video here
https://www.ouh.nhs.uk/chronic-fatigue/treatment/whats-involved.aspx

some patients repeatedly call it chronic fatigue. One did use ME.

eta:
'patient' at the end says
"you've got nothing to lose. Don't be afraid of the word exercise"
"I would say to anyone considering it, absolutely go for it"
the therapist says
"you've got nothing to lose by exploring it"
 
Sly Saint said:
video here
https://www.ouh.nhs.uk/chronic-fatigue/treatment/whats-involved.aspx

some patients repeatedly call it chronic fatigue. One did use ME.
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It's a video from 2017 and it's definitely not ok. It's somewhat different than the GET in the trials. It seems more like graded activity with an emphasis on stabilizing patients' routine. But it's clear that patients are encouraged to exercise with the expectation that this will allow them to do more. In the end, we see one patient happily riding her bike, another is getting back to work while the third is going out for a run, telling listeners to not be afraid of the word exercise.
 
chrisb said:
Did Dr Charles Shepherd really claim that either the video, or graded exercise, were OK as is stated? Presumably it was the video that made the claims about GET.
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I find the summaries of Minutes for Forward-ME meetings are often ambiguously written. These Minutes will have been circulated to members for approval. Why does no-one pick up on ambiguities?

4.6 Dr Charles Shepherd drew attention to a video made by Oxford Hospitals NHS Trust about graded exercise, claiming it is OK.
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or should it have been (which I think is more likely)?

4.6 Dr Charles Shepherd drew attention to a video made by Oxford Hospitals NHS Trust about graded exercise therapy which claims that GET is OK.
 
Dx Revision Watch said:
I find the summaries of Minutes for Forward-ME meetings are often ambiguously written. These Minutes will have been circulated to members for approval. Why does no-one pick up on ambiguities?



or should it have been (which I think is more likely)?

4.6 Dr Charles Shepherd drew attention to a video made by Oxford Hospitals NHS Trust about graded exercise therapy which claims that GET is OK.
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I think it's the latter.
 
“4.5 Dr Willy Weir said he also had concerns because some in the medical profession (notably psychiatrists) were claiming – wrongly - that bedbound patients have a different illness. “

That’s a worry. I can see why they do, reduce ME to fatigue, get some better with exercise and treat the complex severe as something different. Which no mans land are they bring abandoned too I wonder ? ME is ME on a spectrum of severity and debilitation but with the same core characteristics and symptoms. It’s the unexplained fatigued who shouldn’t be lumped in.
 
Item 4.2 about psychological interventions is very concerning.


4.2 Dr Charles Shepherd said that he and Dr Willy Weir were on the NICE Guideline Committee; as members they were restricted in what they could say outside the committee. They could comment on which subjects are being discussed by the NICE guideline committee but could not report the proceedings of their meetings. Dr Willy Weir reported that at the last meeting there was an agenda item on “initial treatment” which he took to mean diagnosis; he was therefore worried when the term “psychological interventions” was used. He had raised objections but was ignored; he would bring them up again at the next meeting.
 
Cinders66 said:
“4.5 Dr Willy Weir said he also had concerns because some in the medical profession (notably psychiatrists) were claiming – wrongly - that bedbound patients have a different illness. “

That’s a worry. I can see why they do, reduce ME to fatigue, get some better with exercise and treat the complex severe as something different. Which no mans land are they bring abandoned too I wonder ?...
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Pervasive refusal shite, probably.
 
NB: Pervasive refusal syndrome is more recently referred to as Pervasive Arousal Withdrawal Syndrome (PAWS). Neither term has been included in ICD-11.

https://www.ncbi.nlm.nih.gov/pubmed/21733931

Clin Child Psychol Psychiatry. 2012 Apr;17(2):221-8. doi: 10.1177/1359104511403680. Epub 2011 Jul 6.
Pervasive refusal syndrome.
Wright B1, Beverley D.

Abstract
We report here on a case of severe pervasive refusal syndrome. This is of interest for three reasons. Firstly, most reported cases are adolescent girls; our case is regarding an adolescent boy. Secondly, he was successfully treated at home and thirdly, the serology showed an apparent infective pre-cursor to the illness with evidence of possible autoimmune serology. A 14-year old boy deteriorated from a picture where diagnosed CFS/ME developed into Pervasive Refusal Syndrome. This included the inability to move or speak, with closed eyes, multiple tics, facial grimacing, heightened sensitivity to noise (hyperacusis) and touch (hyperaesthesia), and inability or unwillingness to eat anything except small amounts of sloppy food. Successful rehabilitation is reported. Finally the issue of nomenclature is discussed, raising the question whether Pervasive Refusal Syndrome would be better renamed in a way that does not imply that the condition is always volitional and oppositional, as this can distract focus away from an alliance between family and clinicians.

PMID: 21733931
DOI: 10.1177/1359104511403680
 
Dx Revision Watch said:
NB: Pervasive refusal syndrome is more recently referred to as Pervasive Arousal Withdrawal Syndrome (PAWS). Neither term has been included in ICD-11.

https://www.ncbi.nlm.nih.gov/pubmed/21733931

Clin Child Psychol Psychiatry. 2012 Apr;17(2):221-8. doi: 10.1177/1359104511403680. Epub 2011 Jul 6.
Pervasive refusal syndrome.
Wright B1, Beverley D.

Abstract
We report here on a case of severe pervasive refusal syndrome. This is of interest for three reasons. Firstly, most reported cases are adolescent girls; our case is regarding an adolescent boy. Secondly, he was successfully treated at home and thirdly, the serology showed an apparent infective pre-cursor to the illness with evidence of possible autoimmune serology. A 14-year old boy deteriorated from a picture where diagnosed CFS/ME developed into Pervasive Refusal Syndrome. This included the inability to move or speak, with closed eyes, multiple tics, facial grimacing, heightened sensitivity to noise (hyperacusis) and touch (hyperaesthesia), and inability or unwillingness to eat anything except small amounts of sloppy food. Successful rehabilitation is reported. Finally the issue of nomenclature is discussed, raising the question whether Pervasive Refusal Syndrome would be better renamed in a way that does not imply that the condition is always volitional and oppositional, as this can distract focus away from an alliance between family and clinicians.

PMID: 21733931
DOI: 10.1177/1359104511403680
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Jeez, you can’t call an illness pervasive refusal and then add in a caveat that the refusal may not be of their own volition...,,to refuse is having ability or tolerance but saying no, to be unable , which is the case in very severe ME is therefore a reflection of being very sick or at least dysfunctioning.
 
“8 Christine had reported that she had been able to convey the reality of ME, the reality of living with ME its impact on daily life and mobility in respect of PIP and also the impact and life changing effect on the sufferer, carers and the whole family. She had also emphasised the particular problems of the severely affected, referring to the CMO Report of 2001 (poor prognosis for those who have been severely affected for more than five years). Along with the reports which she and Tanya had provided she hoped this would help towards achieving sensitive understanding, accurate assessment, correct award first time and appropriate review time.


7.9 Christine would like feedback about good or bad experiences with assessors so that she can report back to IAS and Capita as to whether the work she has done is proving successful or not.”



I wonder how Christine is contacted? I can provide feedback of an assessment soon as I’m to have a home assessment in the coming weeks.

I’ll also be reporting to Carol Monaghan and my own MP who is waiting to hear about it.
 
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