NICE guidelines: Final scope and equality impact assessment published

Remark by the Royal United Hospitals Bath NHS Foundation Trust:
Groups to be covered should also include those who suffer with chronic fatigue even though this maybe secondary to other acute /chronic conditions. The chronic fatigue maybe the most debilitating factor and they should not be excluded from specialist support
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Answer:
The guideline intends to provide recommendations for people with ME/CFS. . It will be beyond the resources of this guideline to develop recommendations for people with chronic fatigue associated with other disorders e.g. multiple sclerosis and heart failure. Recommendations on management of fatigue associated with MS are already included in the MS guideline.
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I have skimmed through the document and so far haven't seen anything seriously worrying in the developers' responses.
 
Primary Care Rheumatology Society wanted to add Fibro into the guidelines because they believe there is an overlap (not that Fibro shouldn't be treated seriously but that's like me saying Gulf War Syndrome should be included as I believe there is an overlap).
The scope identified is limited to CFS/ME and the Primary Care Rheumatology Society wonders why there is not an extension to include Fibromyalgia. The prevalence of CFS/ME is identified as 0.2% but the prevalence of fibromyalgia is much higher, and poses a huge burden in Primary care and we believe there is an overlap between the conditions.
The prevalence of Fibromyalgia is estimated at 5.4% (Prevalence of chronic pain in the UK: a systematic review and meta-analysis of population studies A Fayaz1, P Croft2, R M Langford3, L J Donaldson4, G T Jon. https://bmjopen.bmj.com/content/6/6/e010364 )
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Our friends at Royal College of Psychiatrists
Co-morbid depression and anxiety are high in ME/CFS and the rates of suicide are increased compared to the general population. It is essential that a biopsychosocial approach is taken so the mental health needs of those suffering from ME/CFS are addressed. We take the view that a mind-body split is unhelpful and can prevent patients accessing the care they need. This applies to all long term conditions, including ME/CFS
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and
The choice of diagnostic criteria for ME/CFS should favour inclusivity and clinical feasibility to ensure the guidance is of practical use for health professionals and does not inadvertently exclude groups of patients.
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My interpretation: don't take our cash cow away from us, our careers have been made on useless treatments and we want that to continue. ;)

ETA: South London & Maudsley NHS Foundation Trust submitted the same response as above - at the very least they did admit that the same person was responding for both bodies!
 
We do have some reservations about negative and unbalanced comments in the document regarding the role of cognitive behavioural therapy (CBT) and graded exercise therapy (GET) as evidenced based treatment.
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Some?!!!
We understand that feelings run high, often because of poor or unacceptable experiences of patients with health professionals, and also that these treatments are not suitable or helpful for all
people.
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Almost four decades of this shit and they still dont understand that the onus is on them to prove the treatments SCIENTIFICALLY. They have failed to do so and have sat by promoting junk science.
We hope that the individual experiences of patients are properly heard and acknowledged during this process.
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Why have you ignored them for decades then?

However, we believe it is important in this process that the scientific
evidence is not distorted and seen in its proper context.
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If that does happen the emperor will be revealed as naked. Its laughable that they don't realise that by doing a real scientific review of the evidence they loose hands down and will be shown up as snake oils purveyors.

The principles of CBT and GET for example are both helpful in managing fatigue in neurological conditions such as MS where they are generally welcomed by patients (for example - J. Pöttgen, et al, Randomised controlled trial of a self-guided online fatigue intervention in multiple sclerosis, J. Neurol. Neurosurg. Psychiatry. (2018) jnnp-2017-317463.).
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MS has primary treatments fools. Lets see some data for CBT and GET alone in MS without primary biological treatments then you can compare efficacy in both. Not hocus pocus claims and even in MS with real primary treatments no one claims 30 -60% recovery rates by changing study protocols and redefining recovery to be worse than entry criteria.

We expect and look forward to a NICE guideline that will rigorously and objectively appraise the evidence for treatment as well as reflect the diversity of experience, good and bad, of patients suffering from ME/CFS.
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Suddenly they dont want to drop objective measuring.
 
One of the things that is fundamentally flawed in modern science is claims like 'xyz is used in MS successfully'.

This kind of statement is an appeal to authority and can build an even higher house of cards.

Without examining every basic premise a slight of hand can be performed.

People like the BPS crowd like to obfuscate real issues and sidetrack to throw off real examination. If its the likes of them who are running the CBT and GET studies in MS that just about says it all.

They can just as easily say 'as we know CBT and GET work in ME it will most likely work in MS'.

Its just a circle jerk protected by the fact that all of their claims are taken in blind faith.
 
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large donner said:
One of the things that is fundamentally flawed in modern science is claims like 'xwy is used in MS successfully'.

This kind of statement is an appeal to authority and can build an even higher house of cards.

Without examining every basic premise a slight of hand can be performed.

People like the BPS crowd like to obfuscate real issues and sidetrack to throw off real examination. If its the likes of them who are running the CBT and GET studies in MS that just about says it all.

They can just as easily say 'as we know CBT and GET work in ME it will most likely work in MS'.

Its just a circle jerk protected by the fact that all of their claims are taken in blind faith.
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Just in case anybody gets the impression from the comments that I'm quoting that all the comments made were bad then that is definitely not the case. As I'm going through the 354 pages of them I'm just picking out those that stand out to me and those do tend to be the worse ones. This isn't meant to invalidate large donner's comments, I just wanted to add a bit of perspective to things.
 
No surprise that this comment comes from Royal United Hospitals Bath, NHS Foundation Trust (Bath being within easy reach of Crawley at Bristol).
We question whether the statement that for “most people complete recovery is unusual” is supported by the current research evidence we have available to us.

Recovery from ME/CFS is complex to define and research studies into interventions for ME/CFS have shown that recovery is possible for some people, both from an objective assessment and subjective perspective (e.g. Nijhof et al 2012). Although some people do suffer for a long time, statements saying that recovery is unusual, could lead young people who suffer with ME/CFS to believe
that recovery is not possible, when for them it may be.
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Yeah, lets not be realistic about chances of recovery, as that might upset a few people. And no, recovery from ME/CFS isn't complex to define - if I recovered from ME I would not suffer from it, how is that complex?
 
Next, presumably unintentional, comedy moment from Royal College of Psychiatrists and South London & Maudsley NHS Foundation Trust
Recovery, and certainly improvement, are not unusual.

See this systematic review which looked at the course of at the course of CF/CFS without treatment / intervention: Cairns R, Hotopf M. A systematic review describing the prognosis of chronic fatigue syndrome. Occup Med (Lond) 2005; 55: 20–31.
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My interpretation: if we look at something different, but call it CFS, then we get magic recovery figures! Aren't we great!!
 
BPS-ers don't get things their own way.

Royal United Hospitals Bath NHS Foundation Trust commented
Groups to be covered should also include those who suffer with chronic fatigue even though this maybe secondary to other acute /chronic conditions. The chronic fatigue maybe the most debilitating factor and they should not be excluded from specialist support.
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NICE answered
Thank you for this suggestion. The guideline intends to provide recommendations for people with ME/CFS. It will be beyond the resources of this guideline to develop recommendations for people with chronic fatigue associated with other disorders e.g. multiple sclerosis and heart failure. Recommendations on management of fatigue associated with MS are already included in the MS guideline.
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which suggests to me that they aren't keen for as broad a guideline as the BPS-ers would like.
 
Andy said:
Proof that the Association of British Neurologists are more concerned for their livelihood rather than protecting patients from harm

We do have some reservations about negative and unbalanced comments in the document regarding the role of cognitive behavioural therapy (CBT) and graded exercise therapy (GET) as evidenced based treatment.

We understand that feelings run high, often because of poor or unacceptable experiences of patients with health professionals, and also that these treatments are not suitable or helpful for all
people. We hope that the individual experiences of patients are properly heard and acknowledged during this process. However, we believe it is important in this process that the scientific
evidence is not distorted and seen in its proper context.

The principles of CBT and GET for example are both helpful in managing fatigue in neurological conditions such as MS where they are generally welcomed by patients (for example - J. Pöttgen, et al, Randomised controlled trial of a self-guided online fatigue intervention in multiple sclerosis, J. Neurol. Neurosurg. Psychiatry. (2018) jnnp-2017-317463.).

We expect and look forward to a NICE guideline that will rigorously and objectively appraise the evidence for treatment as well as reflect the diversity of experience, good and bad, of patients suffering from ME/CFS.
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Well, as long as it works with MS then it's bound to work for us, obviously.....
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From the trial registration for that MS study:

Study hypothesis
The study follows 3 major aims:
1. To show effectiveness of an online program to treat fatigue in MS with a cognitive behavioural therapy (CBT) approach based on the concept of Van Kessel (2009).
2. To show that improvement of fatigue will also improve cognitive performance (attention) as well as anxiety and depression.
3. To show that Magnetic Resonance Imaging (MRI) connectivity measures (i.e. DTI and resting state fMRI) will change by the intervention.
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http://www.isrctn.com/ISRCTN25692173

Can anyone see the results for their MRI outcome? Looks like they only reported the subjective self-report outcomes in their paper: http://sci-hub.tw/https://jnnp.bmj.com/content/early/2018/03/16/jnnp-2017-317463.info

Rona Moss-Morris is the second author.

Andy said:
Next, presumably unintentional, comedy moment from Royal College of Psychiatrists and South London & Maudsley NHS Foundation Trust

Recovery, and certainly improvement, are not unusual.

See this systematic review which looked at the course of at the course of CF/CFS without treatment / intervention: Cairns R, Hotopf M. A systematic review describing the prognosis of chronic fatigue syndrome. Occup Med (Lond) 2005; 55: 20–31.
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My interpretation: if we look at something different, but call it CFS, then we get magic recovery figures! Aren't we great!!
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So they claim recovery is not unsual, and to support this claim cite a systematic review that says: "Full recovery from untreated CFS is rare."

"Twenty-eight articles met the inclusion criteria and, for the 14 studies of subjects meeting operational criteria for CFS, the median full recovery rate was 5% (range 0-31%) and the median proportion of patients who improved during follow-up was 39.5% (range 8-63%)."

https://www.ncbi.nlm.nih.gov/pubmed/15699087

I think it's fair to describe something that only happens in 5% of cases as 'unusual'. The Royal College of Psychiatrists have an interesting approach to stats.
 
'Heres all the sourced proofs that large numbers recover from our treatments.'

'I see, are these studies all subjective endpoints, non blinded, carried out by the same people with dubious criteria, hidden data, changed protocols changed recovery definitions, whereby objective outcomes are dropped and the treatments rely on telling patients to report their experiences positively or they wont recover'?

Errr..Ye.

Hmm, you do realise that's the very reason we are doing this review?

Well the treatments work in MS so why wouldnt they work in ME?

Do they work in MS? Wheres the evidence?

Our studies above that we sourced the ones you are reviewing in ME.

 
OK, finally reached the end. My overall impression is that there is a broadly unified message coming from the patient groups, even when different language is used. I also thought that there was far less comment from the BPS-ers, and related groups, than I thought there might be - if anything, it does make me wonder if the document shows all comments made to NICE, but I guess we have no way of knowing.

Other thoughts off the top of my head. Perrin makes an appearance promoting his diagnosis-by-poking-you, as well as his pet support organisation. And I was surprised to see no comment by either BACME or the Sussex & Kent ME/CFS Society as I'd thought they would be all over this.

As I mention earlier in this thread, I've picked out the bad stuff to comment on in this thread and it's nice to be able to say that the bad stuff is far outweighed by the good comments.

One final thought, given that we've got a least one example of a comment being mangled so that it's original meaning is lost, it could be worthwhile for someone to double check all S4ME's comments, if anybody has energy and inclination to do so.
 
Am only on page 197, but agree with @Andy's overall impression. Was actually just thinking I was impressed at how unified the message from patient groups was, despite being written by so many different people. (Unlike South London & Maudsley and the RCP with their one respondent replying as two organisations!)

Andy said:
Next, presumably unintentional, comedy moment from Royal College of Psychiatrists and South London & Maudsley NHS Foundation Trust

My interpretation: if we look at something different, but call it CFS, then we get magic recovery figures! Aren't we great!!
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I am however frustrated that NICE have decided to remove the sentence saying recovery is unusual based on this and 1 or 2 other comments from psychs.
 
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