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

Adrian said:
There isn't really any evidence to point to in these areas. Without a good understanding of mechanisms its just clustering of reported symptoms and people making guesses over what is important/different.
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Well exactly. And there was a very limited amount of time. The debate around names is one we could have forever, but ME/CFS will do for now. It shows NICE is listening. This was always going to be an exercise in compromise, though.

There's a need to be pragmatic. If we'd spent an hour talking about the name, we wouldn't have had time to discuss other things. It was more important to stress that we need objective measures in these clinics, rather than more SF-36-type stuff; that co-morbidities shouldn't be ignored, even if they're not covered in detail in the guideline; that critiques and reanalysis of evidence also needs to be borne in mind; etc.

The key points at our table about criteria were that there needs to be stratification of patients around PEM, and an easy-to-use set of criteria for GPs.

Stratifying with PEM means we can start collecting data, and that will help us make the case in future about taking group x out of the equation or giving them their own guideline distinct from group y. It may actually help us prove, once and for all, if ME patients are distinct from CFS patients and whether they need separate guidelines.

The criteria also have to be easy to follow, so that GPs can start treating patients immediately, rather than delaying treatment for months or (as is more usual) years. They should have the leeway to start some things straight away for any 'suspected' cases.
 
Nathalie Wright said:
Yes of course we discussed the umbrella statement the importance of names etc. I know names and labels are important.
I just worry that spending a lot of time talking about how CFS isn't ME and vice versa isn't always helpful when there's so much to discuss. I mean specifically the idea that CFS and ME are two discrete illnesses.

I'd love to read their submission if it is publically available - do you know if I can?
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Thank you. As far as I am aware this is the joint submission from the 25% group and Stonebird

http://stonebird.co.uk/SCOPE/cover.html

Agree that it would have been hard spending time on one particular topic when (as you say so well) there was so much to discuss.

There also may be a difference of opinion between those representing the long term and severely affected on how important this issue is but I wasn't at your table so have no idea.

In my group it was very hard to steer the discussion back to the Scope. I went in with points on the Scope but it was almost impossible to get my group to discuss it. There were too many general questions and people who wanted to ask questions or make comments on things nothing to do with the Scope.

In particular our Facilitator was intrusive and time wasting.

Discussions on evidence as an example need to feed through to something concrete in the Scope as that is why we were supposed to be there.

The other point of view to consider was the idea that the whole thing was for show (after all our main points that should have driven the Scope were ignored and they lobbed in things like the Lightning Process which didn't get a mention at the original meeting as something we wanted included?) and that like politicians, some were using the Scope workshop to make general or specific points important to them.

I found the discussion at my table on how to include the severely affected in this NICE guideline to be just the type of red herring designed to make it appear as if they actually cared and a diversion away from the Scope.

I'd taken the time to put together a response to the Scope from my stakeholder group which included many long term and severely affected people but was stopped from actually discussing it because of a pointless discussion that went on and on.

The question I did want to put to the Facilitator was why they were asking this and what actual power they intended to give to any responses but didn't want to prolong the discussion more. It's not as if they will be given a majority vote when considering evidence or anything concrete and real. The horse .. will have truly bolted by then.
 
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ukxmrv said:
Thank you. As far as I am aware this is the joint submission from the 25% group and Stonebird

http://stonebird.co.uk/SCOPE/cover.html

Agree that it would have been hard spending time on one particular topic when (as you say so well) there was so much to discuss.

There also may be a difference of opinion between those representing the long term and severely affected on how important this issue is but I wasn't at your table so have no idea.

In my group it was very hard to steer the discussion back to the Scope. I went in with points on the Scope but it was almost impossible to get my group to discuss it. There were too many general questions and people who wanted to ask questions or make comments on things nothing to do with the Scope.

In particular our Facilitator was intrusive and time wasting.

Discussions on evidence as an example need to feed through to something concrete in the Scope as that is why we were supposed to be there.

The other point of view to consider was the idea that the whole thing was for show (after all our main points that should have driven the Scope were ignored and they lobbed in things like the Lightning Process which didn't get a mention at the original meeting as something we wanted included?) and that like politicians, some were using the Scope workshop to make general or specific points important to them.

I found the discussion at my table on how to include the severely affected in this NICE guideline to be just the type of red herring designed to make it appear as if they actually cared and a diversion away from the Scope.

I'd taken the time to put together a response to the Scope from my stakeholder group which included many long term and severely affected people but was stopped from actually discussing it because of a pointless discussion that went on and on.

The question I did want to put to the Facilitator was why they were asking this and what actual power they intended to give to any responses but didn't want to prolong the discussion more. It's not as if they will be given a majority vote when considering evidence or anything concrete and real. The horse .. will have truly bolted by then.
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Your table sounds like a nightmare! I'm sorry to hear that.

I got the opposite feeling from the meeting. LP needs to be in there for them to decide NOT to use it too. They can't just ignore evidence. They need to assess it first, even if it's terrible.

They were keen to state that it didn't mean LP would appear in the guideline. I doubt it will, either, as it's a secretive, copyrighted treatment that isn't sufficiently described in the literature. It's like prescribing a drug with secret ingredients.
 
adambeyoncelowe said:
Your table sounds like a nightmare! I'm sorry to hear that.

I got the opposite feeling from the meeting. LP needs to be in there for them to decide NOT to use it too. They can't just ignore evidence. They need to assess it first, even if it's terrible.

They were keen to state that it didn't mean LP would appear in the guideline. I doubt it will, either, as it's a secretive, copyrighted treatment that isn't sufficiently described in the literature. It's like prescribing a drug with secret ingredients.
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I wasn't trying to argue for or against the LP being in the draft Scope.

Point I was trying to make (albiet badly!) was that our last meeting was supposed to provide the key issues to populate the draft Scope. They don't appear to have listened very carefully to what we patients wanted to see in the draft Scope but they did find the time and space to pluck the LP out of somewhere. The draft scope seems to have been written by the same person or "we won't tell you their name" topic adviser as the surveillance document.

Largely apart from the odd very badly worded para in the Draft Scope (they even twist GET complaints to their advantage in a way) the last meeting may as well not happened.
 
Suffolkres said:
Now ECCH might be telling porkies.... Does any one know it it has to be paid for and, if so, how much?
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I don't see how anyone can charge for a Chalder fatigue score. You might have to pay for software to calculate the score I suppose if you wanted to get scores rapidly in clinic. However, I don't think these scores are of any real relevance to routine clinical use. They might be useful for audit but then you can work out the scores at the weekend in peace prior to producing an audit report.
 
Thought the grant information was interesting.......

https://impact.ref.ac.uk/CaseStudies/CaseStudy.aspx?Id=41185

22: Improved evaluation and treatment outcome for chronic fatigue syndrome
Submitting Institution
King's College London
Unit of Assessment
Psychology, Psychiatry and Neuroscience
Summary Impact Type
Health
Research Subject Area(s)
Medical and Health Sciences: Clinical Sciences, Public Health and Health Services
Psychology and Cognitive Sciences: Psychology

KCL researchers develop the Chalder Fatigue Scale
Initial work by KCL investigators involved finding the best way for patients to describe and rate their symptoms. In 1993 KCL researchers published their Fatigue Questionnaire (later known as the Chalder Fatigue Scale), an 11-item self-rating scale that measures physical and mental fatigue severity. Development research, which involved 374 GP attendees, found the scale to be both reliable and valid with a high degree of internal consistency. It is now adopted as the key measure of therapy response in subsequent studies (1). For instance, it was used in a 1997 KCL-led investigation of 2,376 GP patients aged 18 to 45 to ascertain how widespread the condition was in the UK. In this study, the point prevalence of chronic fatigue and CFS was 11.3% and 2.6% respectively (2).
Grants

• 1993: £105,574; The Wellcome Trust. A RCT of CBT for fatigue in primary care. PI: L Ridsdale.

• 1998: £18,210; South Thames research and development project grant scheme. 5 year follow up of RCT. PI: A Deale.

• 1998: £155,730; Linbury Trust. RCT of the equivalence of GET versus CBT for patients with CFS in general practice. PI: L Ridsdale.

• 2001: £39,831; King's College Hospital Joint Research Committee. Chronic fatigue in general practice: a qualitative study of patients' views. PI: L Ridsdale

• 2003: £6.6M; Medical Research Council and Department of Health. RCT of CBT, GET for CFS (PACE trial). PI at KCL: T Chalder

• 2003: £250,860; The Wellcome Trust. An RCT to compare the effect of GET and counselling, with usual care plus a booklet, for patients with fatigue in primary care. PI: L Ridsdale.

• 2008: £80,000; BRC at South London and Maudsley NHS Trust. A psycho-physiological model of CFS/ME in adolescents. PI: T Chalder.
 
Suffolkres said:
Objective outcome measures and "fatigue scales"- In our group I suggested that BACME acolytes and our local service, used the "Chandler Fatigue Scale"- which is long, demanding and patient unfriendly, local patients think it is a waste of time and energy_ plus it is "licensed" and has to be paid for- or so the Norfolk & Suffolk (East Coast Community Health) clinic told us!!? NICE seemed surprised it has to be paid for!

Now ECCH might be telling porkies.... Does any one know it it has to be paid for and, if so, how much?

Is Recovery from Chronic Fatigue Syndrome Possible?
Published: March 27th, 2013
Category: Blog-Posts

"Chronic Fatigue Syndrome (ME/CFS) is a multifaceted and complex condition characterized by debilitating fatigue, impairments in concentration, and musculoskeletal pain.
About 5 years ago, the UK government issued funding for a large scale study investigating the efficacy and safety of various treatments for ME/CFS, known as the PACE trial
the release of these findings, several key criticisms came to light.........
First, the results of the PACE study used the Oxford selection criteria as opposed to the CDC criteria, meaning that some of the participants might not qualify as having ME/CFS according to internationally accepted CDC criteria. Second, the protocol was changed during the trial. Third, the Chandler Fatigue Scale, designed by one of the researchers, was used by participants to rate fatigue, but it has not yet been accepted as an objective and scientific method for measuring fatigue. All of these factors could confound the results."

Meriem Mokhtech, BS
UF Center for Musculoskeletal Pain Research
https://rheum.med.ufl.edu/2013/03/27/is-recovery-from-chronic-fatigue-syndrome-possible/
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It'd be good to point out to whomever wrote this that it's the Chalder Fatigue Scale, not the Chandler Fatigue Scale. I know it's pedantic, but errors like this make it look as if the author is ill informed, which i'm sure they're not
 
The Chalder Fatigue Scale [edit: that should be Questionnaire, not 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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JemPD said:
I know it's pedantic, but errors like this make it look as if the author is ill informed, which i'm sure they're not
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Nothing wrong in being a pedant! I hope, ill informed I am not.......

I think actually "Chandler" was a Freudian slip?
Chandler, a peddler of wares, especially suited to KCL, ( SW) who, in particular loves a nautical bent in analogies!
I can always blame the predictive text on my phone........
 
I think that the expectation that stakeholders at the meeting could adequately cover all the content NICE threw at us was unreasonable. It might have been if seated at a table with other like-minds who wanted to stick to the topics and with a good facilitator.

NICE wanted us to cover

1. The composition of the GDG
2. The inclusion of different groups in the process (like focus groups and involving the severely affected)
3. The draft Scope

It just wasn't possible and in particular the Draft Scope which we had only just received a week before the meeting
 
Suffolkres said:
Nothing wrong in being a pedant! I hope, ill informed I am not.......

I think actually "Chandler" was a Freudian slip?
Chandler, a peddler of wares, especially suited to KCL, ( SW) who, in particular loves a nautical bent in analogies!
I can always blame the predictive text on my phone........
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haha lol they are 'chandlers' indeed....... what a marvellous freudian slip :D It should be called that from now on imo.

Sorry @Suffolkres i didnt realise you'd written it :confused: I wasnt suggesting in anyway that you were ill informed! Was clearly too fuzzy to be posting :rolleyes:
 
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.
 
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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Yes - aids just reinforce sickness behaviour. We had it formally recorded in paediatric notes when we turned up to a clinic appoint ment in a wheelchair.
Not having a blue badge meant we had to park a huge distance from the main entrance - the previous visit induced a tachyicardic episode later which we were trying to avoid. Explaining that went down like a lead balloon...
 
Email sent,

"Good morning Joshua,

In order to provide feedback for my organisation LocalME, it would be helpful to have the powerpoint and slides electronically.

Could they be sent please?

Because the time allocated to debate was cut, we did not address all points on your agenda, so I wish to submit a few additional comments under the individual slides to Peter Barry. He agreed to this after the meeting.

Also, is it possible to be provided with a delegates list or an organisations attending list, if that is more acceptable ?"

Reply from Coordinator. I have pdf of slides if anyone else needs them?

Dear B
I’ve attached copies of the presentations provided at the ME/CFS workshop last Friday.
Yes, that is fine to submit any comments you have for Peter Barry. Please send these to CFSME@nice.org.uk and these can be passed on to Barry.
I’ve also attached a list of organisations that attended the workshop last week.

Organisations that attended the ME/CFS workshop

Respect for ME
Parents of children with ME/CFS support group
Mast Cell Action
Hope 4 ME Fibro NI
ME Letterforce
25% ME Group
LocalME
F.O.R.M.E
Remember
Public Health Wales
Action for ME
Stockport NHS Foundation Trust
Support for ME
The Tymes Trust
Science for ME
Royal College of Psychiatrists
ME Association
London School of Hygiene & Tropical Medicine
Royal Free London NHS Foundation Trust
British Association for CFS/ME
British Society of Rehabilitation Medicine
PoTS UK
Royal Liverpool University NHS FT
Oxford University Hospitals NHS FT
Royal College of Psychiatrists
The ME Trust
University of Central Lancashire
Thought Field Therapy Foundation UK
Alder Hey Children's NHS Foundation Trust
MESIG Wales
The Centre for Welfare Reform
CFS/ME Research Collaborative
Stonebird
Optimum Health Clinic Foundation
Welsh Association of ME
Healthwatch Bolton
Royal United Hospitals Bath NHS FT
VIRAS
MEAction UK
South Asian Health Foundation
ME Research UK
Society of Homeopaths
BRAME
 
A few attendees that stood out to me

ME Letterforce - couldn't find anything about them via Google.

Thought Field Therapy Foundation UK - https://www.thoughtfieldtherapy.co.uk. Heal yourself through tapping on yourself. Can't find anything from them on the meeting.

VIRAS - Vector-borne Infection - Research, Analysis, Strategy, http://counsellingme.com/VIRAS/VIRAS.html, heavily focused on Lyme, nothing on the recent meeting.

South Asian Health Foundation - "promote good health in the UK’s South Asian communities.", https://www.sahf.org.uk. Nothing on the meeting that I can find. I wonder if its worth reaching out to them, given that they bothered to attend.

Society of Homeopaths - https://homeopathy-soh.org. Of course, there is only one person in this society but, by attending numerous meetings at one time, they are able to have a more powerful effect on each meeting. ;) No mention of attending these meetings anywhere.
 
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