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

Mojisola

silkkat50 wrote: »

I have just started reading this article and am overjoyed to read that there is now a test for M.E. I have had this for about 8 years now and am going to print this out and take it to my doctor to ask him about it. Im betting he wont have heard of it but theres always a chance... Kat xxx

The GP probably won't have heard of it and won't be able to get it done for you because the NHS won't pay for it.

maytaurus

Supporters were invited by Trev Wainwright to join him outside the Royal Courts of Justice for a Vigil to support the Judicial Reviewand they did!
http://www.nicemecourt.co.uk/Outside_the_court.htm

Latest info from original link (first page)
The Judge has reserved his decision, the lawyers have three working days (Fri, Mon and Tues) to get further information to him.We do not know when he will release his verdict
updated 19.45 12th February 2009

tomk wrote: »

Just wondering whether you saw the letter from the Liverpool centre?

Many of the people who work or have worked there have strong views.

I'm appending an example. They ignore that the people in receipt of sickness benefit may be the sickest who tend to be the hardest to treat so that might be why they didn't improve with CBT-type treatment. Also the people who improved may have had some general fatigue syndrome.

Predictors of response to treatment for chronic fatigue syndrome.
Bentall RP, Powell P, Nye FJ, Edwards RH.
Br J Psychiatry. 2002 Sep;181:248-52.
The stated Results were:
"Poor outcome was predicted by membership of a self-help group, being in receipt of sickness benefit at the start of treatment, and dysphoria as measured by the Hospital Anxiety and Depression scale. Severity of symptoms and duration of illness were not predictors of response."

Did you see this tomk and everyone else with ME/CFS

OPEN LETTER TO DR. NYE
( Clinical Champion, Liverpool ME/CFS Clinical Network Co-ordinating Centre) :rotfl::rotfl::rotfl::rotfl::rotfl:

http://www.sayer.abel.co.uk/MES-Nnye.html

You, along with your colleague at the Royal Liverpool Broadgreen Trust, Pauline Powell (Senior Therapist referred to in the above-mentioned job description), were involved in the "Predictors of response to treatment for chronic fatigue syndrome" along with Richard P. Bentall.
http://bjp.rcpsych.org/cgi/content/full/181/3/248
DR. NYE has now retired

Have a l@@k here

ME - A Hidden National Scandal Exposed
http://www.youtube.com/watch?v=hkGq0BH6AHw&feature=related

A symptom list: Myalgic Encephalomyelitis
http://www.youtube.com/watch?v=QCdcAGAHlvg&feature=related

M.E. / Chronic Fatigue Syndrome - Sleepydust Video
http://www.youtube.com/watch?v=r0w9-eQ_fKQ&feature=related

http://readmeukevents.wordpress.com/

tomk_3

Earlier in the thread, I posted some of the comments from the Barts CFS Service on the draft NICE Guidelines.

Here are some more which give an idea how this important centre thinks. When you think of "clinical champions" I don't think you're supposed to think of people who are trying to deny you access to drugs, etc. And not just deny their patients but deny patients around the country. If you are sensitive to chemicals, make sure to check out (viii) including the references.

(iv) On Neuropathetic pain and Gabapentin:

Draft Text:
Gabapentin: The GDG noted that the wider survey was supportive of gabapentin in severe CFS/ME sufferers. The GDG was uncertain why this was the case. Because of its side effects, the GDG did not think that it should be used for mild pain but there will be certain individual cases when it might be considered despite a relatively high side-effect profile. The GDG decided not to make a positive or negative recommendation.

---

SH St Bartholomew's Hospital Chronic Fatigue Services
87 FULL 233 1

The GDG noted the survey support of the use of gabapentin in CFS/ME. However this drug is licensed for neuropathic pain. There is no evidence that patients with CFS/ME have a neuropathy and we would not recommend the use of this drug, particularly as one of its significant side effects is sedation, without empirical evidence for its support, which is currently lacking. It would be surprising if NICE gave guidance based on anecdotal evidence, an inaccurate indication, for a drug, which has significant adverse effects.


GDG Response:
Noted and we have recommended that people should be referred for specialist pain management if appropriate.

====================
(v) Bowel symptoms and CFS/ME:

Draft text:
6.4.5.5 Prescribing of gut anti-spasmodics (such as mebeverine, alverine, and peppermint oil) should be considered for adults and children with bowel symptoms, such as cramp or bloating.

SH St Bartholomew's Hospital Chronic Fatigue Services
85 FULL 229 6.4.5.5
"..gut anti-spasmodics.." are not treatments of CFS/ME since bowel symptoms are not part of CFS/ME. You should make it explicit that this treatment might be indicated for the treatment of IBS, if present comorbidly. Alternatively, and perhaps more wisely, you could suggest that IBS, if present, should be treated in the light of the best available evidence, and refer readers to appropriate guidance, which may or may not include considering antispasmodics as the treatment of choice for "bloating", although we would doubt it. You do mention IBS on page 233, line 12.

NICE:
We have revised this recommendation and referred to the NICE IBS guideline – currently in development.

=====================
(vi) On Drug Intolerance and CFS/ME:


Draft text:
6.4.5.2 Adults and children with CFS/ME may experience greater intolerance and more severe adverse/side effects from drug treatment. Where appropriate, drug treatment used for symptom control should therefore be initiated at a lower dose than in usual clinical practice, and should be increased gradually.

SH St Bartholomew's Hospital Chronic FatigueServices
84 FULL 229 6.4.5.2
We are not aware of any reliable and replicated evidence to support the statement that patients with CFS/ME are more intolerant or have more severe adverse effects; and "more intolerant" than whom? We do not agree that drug treatment should be initiated at lower dose than in usual clinical practice. This possible myth is repeated within the guideline at various points, and is important since it may make doctors more likely to prescribe sub-therapeutic doses. If you are going to keep this included, you should make sure that the anecdotal level of evidence for this is explicitly stated. We would suggest changing to "..drug treatment at lower doses may be considered…."

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

(vii) On Recovery times:

Draft text:
6.3.6.16 When planning a programme of GET the healthcare
professional should:
• discuss with the patient ultimate goals with the patient that are important and relevant to them. This may be, for example a 2 x 15 minutes daily brisk walk to the shop, a return to previous active hobby such as cycling or gardening, or, if more severely affected, sitting up in bed to eat a meal.
• recognise that it may take weeks, months, or even years to achieve goals, and it is essential that the therapy structure takes this pace of progress into account.

SH St Bartholomew's Hospital Chronic Fatigue Services
75 FULL 188 6.3.6.16

These goals should include recovery, not just exercise and activity goals. If it takes "years" to achieve goals, then either the goals are wrong or the therapy is wrong. What other treatment in medicine would take years to work? We suggest "or even years" is deleted. If a therapy is not helping within a few months, either the therapy or the diagnosis or both should be reviewed and changes considered. We suggest that this advice is pertinent to all treatment approaches, not just for GET.

NICE:
The statistics indicate that total recovery is relatively rare and the GDG felt that to include recovery as a goal may lead to disappointment. As the goals are patient derived they may be long term. Interim goals would be developed.

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

(viii) on Multiple Chemical Sensitivity (MCS):

Draft text (this is in a section on severe CFS/ME):
"Family life may also be affected as people with severe CFS/ME are often sensitive to sounds and smell. For example, the person may be unable to tolerate light or cleaning products whilst they are often unable to control their body temperature, thus impacting on the living environment."
and
"..Those caring for an individual with severe CFS/ME professionally need an understanding of the illness and the needs of the individual to meet the challenges of, for example, cooking or cleaning for an individual who is sensitive to the smell of food or of cleaning materials or bathing an individual who finds touch painful. Therefore proper training should be given about the condition with the involvement of the patient for any particular problems."


SH St Bartholomew's Hospital Chronic Fatigue Services
92 FULL 261 3 +

A patient with increased sensitivity to the smell of various chemicals may be suffering from multiple chemical sensitivity, but you would be making a dubious assumption to state this is part of or even characteristic of severely disabling CFS/ME. MCS is a potentially remediable condition through a graded exposure programme on the basis that the underlying pathophysiology is a conditioned response. It should not be considered as a part of CFS/ME.

(See: Staudenmayer H, Binkley KE, Leznoff A, Phillips S. Idiopathic environmental intolerance: Part 2: A causation analysis applying Bradford Hill's criteria to the psychogenic theory. Toxicological Reviews 2003;22:247-61.

Bornschein S, Hausteiner C, Zilker T, Forstl H. Van den Bergh O, Devriese S, Winters W, Veulemans H, Nemery B, Eelen P, Van de Woestijne KP. Acquiring symptoms in response to odors: a learning perspective on multiple chemical sensitivity. Annals of the New York Academy of Sciences 2001;933:278-90.

Otto T, Giardino ND. Pavlovian conditioning of emotional responses to olfactory and contextual stimuli: a potential model for the development and expression of chemical intolerance. Annals of the New York Academy of Sciences 2001;933:291-309.)

NICE response:
This section has been removed.

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

(ix) Point about whether CFS/ME is an incurable chronic disease or not:

Draft text:
1.3.1.6 The objectives of the individualised programme are to:
• sustain or gradually extend, if possible, the person's physical, emotional and cognitive capacity
• manage the physical and emotional impact of their symptoms.


SH St Bartholomew's Hospital Chronic Fatigue Services
103 NICE 18 1.3.1.6

The emphasis here would be appropriate for someone suffering from an incurable chronic disease, which CFS/ME is most often not. The aim of an individualised programme should be to help the patient recover, or, if this is not possible, to help the patient improve their quality of life and minimise disability. The expectation of both the patient and the practitioner is vitally important in determining outcome, and these current aims are too conservative, and inconsistent with the best available evidence.

NICE Response:
The Guideline Development Group had to balance a positive outlook with the
recognition that some people will not recover.

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

(x) On liasing with employers:

Draft text:
• Healthcare professionals should be proactive in advising about fitness for work and education, and recommend adjustments or adaptations to work or studies to enable rehabilitation of adults and children with CFS/ME. This includes liasing (with the person's consent) with employers, education providers and support services e.g: occupational health services


St Bartholomew's Hospital Chronic Fatigue Services
FULL 23 22 thru 27
Sometimes acting as an intermediary between patient and employer may
encourage dependence rather than fostering recovery via empowerment.
We therefore suggest adding the word "may" on line 24 to read, "This
may include…"

Magenta

THANK YOU to the OP.

I have just found this thread.

maytaurus

The Judicial Review of the NICE guideline on ME/CFS
Saturday, 14 February 2009
http://www.meassociation.org.uk/content/blogcategory/30/161/

summary of High Court proceedings prepared by Dr Charles Shepherdhttp://www.meassociation.org.uk/content/view/791/161/

mardatha

Can I just say something here .... years ago when I first got ill, I was in all the self help groups on the internet and they were mainly american. I used to read about the treatment they were offered and rage at my gp. They seemed to have so many tests and drugs that we dont. But I noticed after many months that nobody got better ! so there isnt a miracle cure .
And even the things that people said had helped them differed wildly.
In the end what made me feel better was accepting this illness and this new me, and keeping the head. Going back to old fashioned eating & patterns of living. Take tons of multi vits and dont eat too much rubbish. I havent got better but I feel better in myself.
So yes by all means appreciate the fighters for ME but dont set your heart on a cure YET ! lol

CJ

Hi All
I got my my letter from DLA to day, they have given me higher rate mobility and lower rate care. They wouldn't back date to Dec and ignored my reasons for it being a week late, they have really tightened up procedures but I can't complain too much. The downside is my gas is going up £36 a month, sods law I suppose

tomk_3

Kizzy_S wrote: »

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

As I said before, the article , "Smoke and Mirrors" on the ME Research UK website http://www.meresearch.org.uk/information/publications/niceguideline.html is speaking about the "draft guidance" - but in any case, the quote DOES also appear, unchanged, in the final NICE guideline (FULL, not the shorter, version of 22nd August 2007) on page 252 (of 317 pages) which can be found at http://www.nice.org.uk/Guidance/CG53/Guidance/pdf/English.
"The GDG did not regard CBT or other behavioural therapies as curative or directed at the underlying disease process, which remains unknown. Rather, such interventions can help some patients cope with the condition and experience improved functioning, and consequently a improved quality of life."

This is a summary of MERUK's central point regarding the NICE guidelines:
'The practical consequences of NICE's recommendations can be seen in the "Quick reference guide" to the NICE Guideline, which (unfortunately) is the only part of the extensive guideline read by most healthcare professionals and GPs. On page 6, the Pathway to Care (see box) ends at a category called "Specialist CFS/ME care", inside which CBT and/or GET are the only "treatments" alongside activity management. Whatever the merits of these therapies in themselves for psychological illnesses, it is surely unreasonable for them to be enshrined in established national guidelines which feed into clinical care and government policy - at a potential cost to the country of £45.2 million over a 5-year term - on the evidence available".'

daska

tomk wrote: »

Earlier in the thread, I posted some of the comments from the Barts CFS Service on the draft NICE Guidelines.

Here are some more which give an idea how this important centre thinks. When you think of "clinical champions" I don't think you're supposed to think of people who are trying to deny you access to drugs, etc. And not just deny their patients but deny patients around the country. If you are sensitive to chemicals, make sure to check out (viii) including the references.

(iv) On Neuropathetic pain and Gabapentin:

Draft Text:
Gabapentin: The GDG noted that the wider survey was supportive of gabapentin in severe CFS/ME sufferers. The GDG was uncertain why this was the case. Because of its side effects, the GDG did not think that it should be used for mild pain but there will be certain individual cases when it might be considered despite a relatively high side-effect profile. The GDG decided not to make a positive or negative recommendation.

---

SH St Bartholomew's Hospital Chronic Fatigue Services
87 FULL 233 1

The GDG noted the survey support of the use of gabapentin in CFS/ME. However this drug is licensed for neuropathic pain. There is no evidence that patients with CFS/ME have a neuropathy and we would not recommend the use of this drug, particularly as one of its significant side effects is sedation, without empirical evidence for its support, which is currently lacking. It would be surprising if NICE gave guidance based on anecdotal evidence, an inaccurate indication, for a drug, which has significant adverse effects.


GDG Response:
Noted and we have recommended that people should be referred for specialist pain management if appropriate.

====================
(v) Bowel symptoms and CFS/ME:

Draft text:
6.4.5.5 Prescribing of gut anti-spasmodics (such as mebeverine, alverine, and peppermint oil) should be considered for adults and children with bowel symptoms, such as cramp or bloating.

SH St Bartholomew's Hospital Chronic Fatigue Services
85 FULL 229 6.4.5.5
"..gut anti-spasmodics.." are not treatments of CFS/ME since bowel symptoms are not part of CFS/ME. You should make it explicit that this treatment might be indicated for the treatment of IBS, if present comorbidly. Alternatively, and perhaps more wisely, you could suggest that IBS, if present, should be treated in the light of the best available evidence, and refer readers to appropriate guidance, which may or may not include considering antispasmodics as the treatment of choice for "bloating", although we would doubt it. You do mention IBS on page 233, line 12.

NICE:
We have revised this recommendation and referred to the NICE IBS guideline – currently in development.

=====================
(vi) On Drug Intolerance and CFS/ME:


Draft text:
6.4.5.2 Adults and children with CFS/ME may experience greater intolerance and more severe adverse/side effects from drug treatment. Where appropriate, drug treatment used for symptom control should therefore be initiated at a lower dose than in usual clinical practice, and should be increased gradually.

SH St Bartholomew's Hospital Chronic FatigueServices
84 FULL 229 6.4.5.2
We are not aware of any reliable and replicated evidence to support the statement that patients with CFS/ME are more intolerant or have more severe adverse effects; and "more intolerant" than whom? We do not agree that drug treatment should be initiated at lower dose than in usual clinical practice. This possible myth is repeated within the guideline at various points, and is important since it may make doctors more likely to prescribe sub-therapeutic doses. If you are going to keep this included, you should make sure that the anecdotal level of evidence for this is explicitly stated. We would suggest changing to "..drug treatment at lower doses may be considered…."

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

(vii) On Recovery times:

Draft text:
6.3.6.16 When planning a programme of GET the healthcare
professional should:
• discuss with the patient ultimate goals with the patient that are important and relevant to them. This may be, for example a 2 x 15 minutes daily brisk walk to the shop, a return to previous active hobby such as cycling or gardening, or, if more severely affected, sitting up in bed to eat a meal.
• recognise that it may take weeks, months, or even years to achieve goals, and it is essential that the therapy structure takes this pace of progress into account.

SH St Bartholomew's Hospital Chronic Fatigue Services
75 FULL 188 6.3.6.16

These goals should include recovery, not just exercise and activity goals. If it takes "years" to achieve goals, then either the goals are wrong or the therapy is wrong. What other treatment in medicine would take years to work? We suggest "or even years" is deleted. If a therapy is not helping within a few months, either the therapy or the diagnosis or both should be reviewed and changes considered. We suggest that this advice is pertinent to all treatment approaches, not just for GET.

NICE:
The statistics indicate that total recovery is relatively rare and the GDG felt that to include recovery as a goal may lead to disappointment. As the goals are patient derived they may be long term. Interim goals would be developed.

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

(viii) on Multiple Chemical Sensitivity (MCS):

Draft text (this is in a section on severe CFS/ME):
"Family life may also be affected as people with severe CFS/ME are often sensitive to sounds and smell. For example, the person may be unable to tolerate light or cleaning products whilst they are often unable to control their body temperature, thus impacting on the living environment."
and
"..Those caring for an individual with severe CFS/ME professionally need an understanding of the illness and the needs of the individual to meet the challenges of, for example, cooking or cleaning for an individual who is sensitive to the smell of food or of cleaning materials or bathing an individual who finds touch painful. Therefore proper training should be given about the condition with the involvement of the patient for any particular problems."


SH St Bartholomew's Hospital Chronic Fatigue Services
92 FULL 261 3 +

A patient with increased sensitivity to the smell of various chemicals may be suffering from multiple chemical sensitivity, but you would be making a dubious assumption to state this is part of or even characteristic of severely disabling CFS/ME. MCS is a potentially remediable condition through a graded exposure programme on the basis that the underlying pathophysiology is a conditioned response. It should not be considered as a part of CFS/ME.

(See: Staudenmayer H, Binkley KE, Leznoff A, Phillips S. Idiopathic environmental intolerance: Part 2: A causation analysis applying Bradford Hill's criteria to the psychogenic theory. Toxicological Reviews 2003;22:247-61.

Bornschein S, Hausteiner C, Zilker T, Forstl H. Van den Bergh O, Devriese S, Winters W, Veulemans H, Nemery B, Eelen P, Van de Woestijne KP. Acquiring symptoms in response to odors: a learning perspective on multiple chemical sensitivity. Annals of the New York Academy of Sciences 2001;933:278-90.

Otto T, Giardino ND. Pavlovian conditioning of emotional responses to olfactory and contextual stimuli: a potential model for the development and expression of chemical intolerance. Annals of the New York Academy of Sciences 2001;933:291-309.)

NICE response:
This section has been removed.

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

(ix) Point about whether CFS/ME is an incurable chronic disease or not:

Draft text:
1.3.1.6 The objectives of the individualised programme are to:
• sustain or gradually extend, if possible, the person's physical, emotional and cognitive capacity
• manage the physical and emotional impact of their symptoms.


SH St Bartholomew's Hospital Chronic Fatigue Services
103 NICE 18 1.3.1.6

The emphasis here would be appropriate for someone suffering from an incurable chronic disease, which CFS/ME is most often not. The aim of an individualised programme should be to help the patient recover, or, if this is not possible, to help the patient improve their quality of life and minimise disability. The expectation of both the patient and the practitioner is vitally important in determining outcome, and these current aims are too conservative, and inconsistent with the best available evidence.

NICE Response:
The Guideline Development Group had to balance a positive outlook with the
recognition that some people will not recover.

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

(x) On liasing with employers:

Draft text:
• Healthcare professionals should be proactive in advising about fitness for work and education, and recommend adjustments or adaptations to work or studies to enable rehabilitation of adults and children with CFS/ME. This includes liasing (with the person's consent) with employers, education providers and support services e.g: occupational health services


St Bartholomew's Hospital Chronic Fatigue Services
FULL 23 22 thru 27
Sometimes acting as an intermediary between patient and employer may
encourage dependence rather than fostering recovery via empowerment.
We therefore suggest adding the word "may" on line 24 to read, "This
may include…"

I read through this list and thought - OK, if these things are not ME then how many comorbid conditions have I got? Why can't I control my body temperature? Why am I sensitive to noise? What is causing the insomnia - or making me want to sleep all day (it changed radically when I came off Prozac? anyone else had this?) Why am I sensitive to smells? Why am I fatigued? Why can't I concentrate? Why do I have digestive problems? What is causing the muscle weakness in my hands and legs? Why is my balance even more problematic? Who nicked my memory? Why do my muscles feel as if they're being sandpapered and my joints like someones stuck metal pins in them? Why did increasing my exercise not make me feel better? WHY? WHY? WHY?

I don't think I'd mind so much if they could come up with some logical explanations but they haven't and, I suspect, can't!

tomk_3

daska wrote: »

I read through this list and thought - OK, if these things are not ME then how many comorbid conditions have I got?

Good point. I think it's an attempt to try to get away with saying "Chronic Fatigue Syndrome"="Chronic Fatigue". Lots of other conditions can have lots of symptoms.

Also for some reason the same submission had no problem about antidepressants being given out for depression at clinics i.e. depression is more likely to be a co-morbid separate condition than some of the other symptoms.