ME/CFS LINKS & INFO (*NICE Guideline Judicial Review High Court11/12th Feb 2009*)

tomk_3

Kizzy_S wrote: »

Tomk - the quote in the table you linked to does not seem to appear anywhere in the NICE guideline.

That article was on the draft NICE guidelines so that was probably where the quote was from. But the basic point about what conditions NICE recommends CBT for stands.

I don't think people should be taken in by the spin. CBT is not used as a front line treatment for Cancer. People with Cancer get drugs, radiation, chemotherapy, etc. A percentage may then develop secondary psychological issues which might be treated by CBT.

With ME or CFS, the proponents think that GET and CBT based on GET is all that we require. This causes all sorts of problems.

I don't think people should believe all the hype about it being "evidence-based". In Belgium, they had five clinics where people had CBT and GET for on average 41 sessions. There was basically no change in the exercise results at the end and on average people were working less.

tomk_3

daska wrote: »

CBT is fine as long as it is recognised for what it is - a way of identifying thoughts and beliefs that are unhelpful and replacing them with ones that are positive. That's as good as it gets. It is not a cure. For someone like myself, who has always found ways to cope, or get around the not coping, it is of little relevance. For someone who always focuses on what they can't do and how awful it is, rather than more positive aspects, it's very valuable.

Some of CBT may help people. But some of the CBT for CFS is designed to persuade people to exercise and do more i.e. is based on the GET model of the illness.

tomk_3

Kizzy_S wrote: »

That sounds awful! I can't imagine how I'd feel if a doctor told me that. Luckily I'd already read up on GET and I knew much better than my GP what it actually is! It's not about 'pushing your limits' at all - and again, the NICE guideline does make that pretty clear.

I'm not sure how clear the NICE Guideline makes this at all.

Richard Eddleston one of the patients reps said they "lost" the debate/vote on whether there was an activity ceiling in the illness i.e. one shouldn't find in the document any reference that people only get to a certain level and will get stuck.

This is what CBT/GET proponents believe - gradually people can do more and get fully better.

This might be a nice think for people going through a treatment to believe but isn't most people's experience.

And this view causes all sorts of problems.

If patients can't get better, the blame is put back on the patient for doing the programme incorrectly.

nicenotnice4ME

Kizzy_S wrote: »

That sounds awful! I can't imagine how I'd feel if a doctor told me that. Luckily I'd already read up on GET and I knew much better than my GP what it actually is! It's not about 'pushing your limits' at all - and again, the NICE guideline does make that pretty clear.

Hmmm, interesting "Kizzy_S". Why have you suddenly appeared on this forum to promote the views of the psyches and their pet CBT and GET therapies, and to argue against those who are supporting the JR against the NICE guidelines? Did someone alert you to this discussion and send you along to "do your bit"? Are you from that rotten lot at AYME or AfME by any chance? Who tipped you the wink about this discussion? Funny eh?

If you are someone who has had CBT and GET then maybe you are one of those people who claim to have/have had ME but who really have a fatigue state which can be treated with CBT and GET? These people are making things worse for genuine ME sufferers for whom CBT and GET worens their condition. How can CBT and GET improve the function of the mitochondria which are now proven to be defective in true ME sufferers? How can GET help those who suffer from post-exertional exacerbation of their symptoms. Recent American research has shown that results from true ME patients' repeat exercise tests are unlike anything seen before and are totally against the norm of what is expected in a healthy person.

To be honest you write just like the psyches do. Funny that. Got a vested interest to push or something?

Kizzy_S

Ah, a conspiracy theorist I see!

I'm just an individual patient - not associated with any group or anything like that. I heard about the judicial review and googled it, because I'm worred that the treatment I'm getting - which is working for me - will be withdrawn if the NICE guideline gets withdrawn. This forum post was one of the things that came up in the google search. It's as simple as that.

And Tomk - this is the NICE definition of GET. It seemed pretty clear to me when I first read it that it's not about pushing yourself as far as you can go etc.

An evidence-based approach to CFS/ME that involves physical assessment, mutually negotiated goal-setting and education. The first step is to set a sustainable baseline of physical activity, then the duration of the activity is gradually increased in a planned way that is tailored to the person. This is followed by an increase in intensity, when the person is able, taking into account their preferences and objectives, current activity and sleep patterns, setbacks/relapses and emotional factors. The objective is to improve the person’s CFS/ME symptoms and functioning, aiming towards recovery.

It also says:

The following strategies should not be offered to people with
CFS/ME:
• Advice to undertake unsupervised, or unstructured, vigorous exercise
(such as simply ‘go to the gym’ or ‘exercise more’) because this may worsen
symptoms.

maytaurus

ME/CFS A multisystem illness that robs its victims of their health and their dignity.

Received December 2, 2008; accepted January 12, 2009; available online January 15, 2009
paper
"Chronic Fatigue Syndrome and Mitochondrial Dysfunction"

(authors: Prof Norman Booth of Oxford University, Dr John McLaren Howard of Acumen and myself), presenting evidence that chronic fatigue has a physical basis

EXERTS FROM FULL PAPER;
There is mounting evidence that the symptoms of ME are due to dysfunctions on the cellular level.

A widely-held hypothesis (A) is that the metabolism of people with CFS is normal, but the fatigue and other symptoms are due to psychological factors.
An alternative hypothesis (B) is that there is a metabolic dysfunction with the result that not enough energy is being produced.
However, hypothesis A' is not supported by experiment in many cases as we will see below.
There is considerable evidence that mitochondrial dysfunction is present in some patients. Muscle biopsies studied by electron microscopy have shown abnormal mitochondrial degeneration
Biopsies have also found severe deletions of genes in mitochondrial DNA (mtDNA), genes that are associated with bioenergy production
both the Canadian and the new NICE criteria use the term ME/CFS although their criteria are very different.
At the present time the CDC criteria are internationally widely used as the criteria for research purposes despite their lack of precision !!
http://www.cdc.gov/cfs/

maytaurus

Smoke and Mirrors — ME/CFS NICE Guideline

http://www.meresearch.org.uk/information/publications/niceguideline.html

The role of NICE and the controversies surrounding its decisions and criticised on a number of grounds are well known
(see the article,Thursday, 12, Feb 2009 09:32
http://www.politics.co.uk/briefings-guides/issue-briefs/health/nhs/national-institute-clinical-excellence/national-institute-health-and-clinical-excellence-$366617.htm
the Institute expects to come under fire, and probably treats its wounds as badges of honour. Yet, there is something unusual — unique, in fact — about the current uproar
Essentially, the Institute has not got to grips with core issues surrounding the debilitating illnessME/CFS

daska

tomk wrote: »

Some of CBT may help people. But some of the CBT for CFS is designed to persuade people to exercise and do more i.e. is based on the GET model of the illness.

Yes, sorry, I didn't make it clear that I recognise how CBT has been misapplied in conjunction with GET. However, what I said stands; CBT, in it's true form, is helpful in many conditions but it is not a cure, it is merely a way of finding coping strategies. I was prescribed CBT about 12 years ago (entirely unrelated to ME) so I have experience of 'the real deal'.

tomk_3

Kizzy_S (and all),

Just because the NICE Guidelines say things about not telling people to do more, etc doesn't mean that's what is going to happen or what many of the proponents of the GET approach believe. As I recall, the Barts submission on the draft NICE guidelines objected to some suggestions like this. The people from Barts are the people who train a lot of the therapists into how to do GET

The objective is to improve the person’s CFS/ME symptoms and functioning, aiming towards recovery.

The thing about GET for ME or CFS (Fukuda defined) is that it hasn't been shown to bring it about recovery. For example, the authors of the report on the Belgian CBT/GET clinics (over 600 patients) said there was basically no recoveries.
But it sounds great that people can aim for recovery. This is the point I was making - the proponents think there is no activity ceiling, that people should just be able to keep increasing although they might stabilise for a while at different levels.

It's so seductive this idea that one can gradually do more. What at least one study found was that people can be cutting other activity out of their lives to do the GET so they aren't necessarily doing much more in total.

If only it was as easy as just doing more. But it's not. But the propaganda machine doesn't tell the patients or doctors this. This causes all sorts of problems.

The difference between people who believe in the pacing approach and the GET approach is the people who believe in the pacing approach accept there can be activity ceilings. They would encourage people to try to do more. But they recognise there is something unusual going on in the bodies of people with ME or CFS. The GET proponents, if you read what they write in medical journals, believe it is things like deconditioning and general poor lifestyle, bad habits, etc.

tomk_3

Here is a sample of some of the Barts CFS Service's submissions on the Draft NICE Guidelines. It shows where they are coming from. The Barts service is probably the most influential service in the country. It has a large catchment area with various services in other counties being connected to it. And they're involved in training professionals.

(i) On Disability aids and equipment:

Draft text:
6.3.6.8 For adults and children with moderate or severe symptoms,
provision of equipment and adaptations (for example, a wheelchair,
blue badge or stairlift) to allow individuals to improve their
independence and quality of life should be considered, if
appropriate and as part of an overall management plan.

SH St Bartholomew's Hospital Chronic Fatigue Services
69 FULL 183 6.3.6.8
"…equipment and adaptations (for
example, a wheelchair, blue badge or
stairlift)…"
We disagree with this recommendation.
Why should someone who is only
moderately disabled require any such
equipment? Where is the warning about
dependence being encouraged and
expectation of recovery being damaged
by the message that is given in this
intervention? We are in no doubt that it
is a powerful message for a therapist of
any sort to provide such aids. Our view
is that such aids should only be
considered by a multi-disciplinary
therapeutic team as a whole, and
usually in the context of providing a
temporary means for a patient to
ncrease their activity levels. An
example would be providing a wheelchair
for a bed-bound patient as part of
their active rehabilitation programme. In
our opinion, such aids should never be
seen as a permanent solution to
disability in this illness.

NICE:
We have recommended such
equipment only if appropriate, and
as part of an overall management
plan and as an aid to independence.

---

Another quote along these lines:
In reply to (Draft NICE text):
1.3.1.8 For adults and children with moderate or severe symptoms,
provision of equipment and adaptations (for example, a wheelchair,
blue badge or stairlift) to allow individuals to improve their
independence and quality of life should be considered, if
appropriate and as part of an overall management plan.

Barts wrote:
Equipment and aids may hinder
recovery as much as help it, and their
prescription needs to consider both
outcomes. We believe disability aids
can help a patient towards recovery if
their use encourages a widening and
increase in their own activities, on a
temporary basis, as a means of
supporting a rehabilitation
programme. They should rarely if
ever be used for patients with only
moderate disabilities.


=====================


(ii) On making information available on audio tape:

SH St Bartholomew's Hospital Chronic Fatigue Services
91 FULL 260 13

Why should anyone with concentration difficulties find it easier to
use audiovisual technology, which by your implication does not involve
reading, more than reading itself (from either a book or computer
screen)? Would it not be more effective to negotiate a simple graded
programme of reading to help such a patient improve their reading
ability, along with helping to improve their cognitive capacity
through improving sleep and mood? What might be effective advice is to
encourage the use of voice-activated software in someone who finds
typing using a keyboard physical tiring, and needs to meet a deadline
in their job or studies.

NICE GDG:
Noted and removed – we consider that the text on including cognitive
activities addresses these points.

================================

(iii) On Weight loss in CFS/ME

SH St Bartholomew's Hospital Chronic Fatigue Services
88 FULL 248 6.5.5.2

"Adults or children who experience
severe weight loss should be referred
to a dietitian for assessment, advice
and nutritional support, which in
extreme cases may include tube
feeding."
This is alarming and arguably negligent
advice, which we strongly condemn.
Any patient who experiences severe
weight loss should be referred for
appropriate assessment, not by a
dietician alone, but by an appropriate
specialist doctor (gastro-enterologist or
psychiatrist) so a diagnosis can be
made. We do not know of any reliable
or replicated evidence that severe
weight loss, in deed any weight loss at
all, is a part of CFS/ME. Whereas we
are aware of patients referred to our
service with a diagnostic label of
CFS/ME who on assessment have an
alternative diagnosis, most commonly
anorexia nervosa (sometimes
presenting atypically without a body
image disorder, which is well described
in the anorexia nervosa literature), but,
on occasion, malabsorption.

NICE
This recommendation has been
removed.