Dr Ian Gibson MP: Position statement on the NICE CFS/ME Guidelines

On 7 May, Ann Keen, Parliamentary Under Secretary for Health, responded with a Written Answer to a series of questions submitted by Dr Ian Gibson MP, in relation to ME/CFS.  The first question Dr Gibson had submitted was:

“To ask the Secretary of State for Health what steps he is taking to

(a) ensure implementation of the National Institute for Health and Clinical Excellence’s guidelines on the treatment of myalgic encephalopathy (ME) published in August 2007″

It might be interpreted that in raising this question with the Secretary of State for Health that Dr Gibson endorses the implementation of the NICE CFS/ME Guidelines.

I wrote to Dr Gibson (Secretary to APPG on ME) and asked for a position statement on the NICE CFS/ME Guidelines. On 20 May, Dr Gibson provided me with the following response:

“I do not support the NICE CFS/ME guidelines. I feel they are detrimental to patients and that they fail to consider the relevant evidence about the illness.

I can understand your point on the specific wording of the question and I myself and not happy with the appearance of the word ‘ensure’ however the Clerks in the office often rephrase questions and may in this case have misread my intention. Parliamentary Questions are a way to extract information and flag up interest in a specific policy area, in that sense the question does serve it’s purpose. I am confident the DOH and the ME community is aware of my position on the guidelines given my previous public comments and ongoing correspondence over a number of years.” 

Ian Gibson, 20 May 2008

 

Dr. Des Turner MP (Chair, APPG on ME) has also asked the Secretary of State for Health:

“(3) what steps his Department is taking to encourage primary care trusts to implement the recommendations of the new guidelines on myalgic encephalomyelitis/chronic fatigue syndrome produced in August 2007 by the National Institute for Health and Clinical Excellence. [203964]”

Dr Turner will also be approached for a position statement on the NICE CFS/ME Guidelines.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

A copy of my email to Dr Gibson is appended.

To: Dr Ian Gibson, Secretary,
CC: Ms Sarah Vero, Researcher to Dr Ian Gibson

Re: In connection with

House of Commons: 7 May 2008

http://www.publications.parliament.uk/pa/cm200708/cmhansrd/cm080507/text/80507w0028.htm

To ask the Secretary of State for Health what steps he is taking to (a) ensure implementation of the National Institute for Health and Clinical Excellence’s guidelines on the treatment of myalgic encephalopathy (ME) published in August 2007 […] [201832]

______________________________________________________

Dear Dr Gibson,

I hope you and Sarah are well.

On Monday 12 May, Action for ME issued a media release calling “for more suitably trained GET therapists”.

The ME Association’s immediate response has been to issue two position statements on GET (Graded Exercise Therapy), prepared by Dr Charles Shepherd, with particular reference to the NICE CFS/ME Guidelines recommendation that everyone with mild or moderate ME/CFS should be automatically offered a course of GET.

The ME Association is calling for an urgent review of the NICE recommendation relating to GET.

The second is a joint statement with The Young ME Sufferers Trust who are also calling for an urgent review of the NICE recommendation relating to GET. Both charities have significant concerns that the implementation of GET as a blanket treatment for ME/CFS is likely to result in iatrogenic damage to some patients. We have appended both of these statements for your information.

I note that on 7 May, Ann Keen responded with a Written Answer to a series of questions submitted by you, in relation to ME/CFS, the first of which asked:

“To ask the Secretary of State for Health what steps he is taking to (a) ensure implementation of the National Institute for Health and Clinical Excellence’s guidelines on the treatment of myalgic encephalopathy (ME) published in August 2007”

It might be interpreted that in raising this question with the Secretary of State for Health you are endorsing the implementation of the NICE CFS/ME Guidelines.

On Sunday, 26 November 2006, to launch the publication of their Report, the GSRME panel issued a press release which stated:

“NICE has just finished consulting on their draft guidelines for treating CFS/ME. These guidelines have been widely criticised by patient groups and by the APPG on ME.

“Chair Des Turner described them in a meeting last week as ‘not fit for man nor beast’ Dr Ian Gibson MP of the Inquiry described them as ‘useless’.”

Given the considerable and ongoing concerns about the fitness for purpose of the NICE CFS/ME Guidelines – a view shared by Dr Shepherd, The Young ME Sufferers Trust, The 25% ME Group, RiME and many within the ME patient community, including ourselves, I would like to publish a position statement from you on the NICE CFS/ME Guidelines.

Would you be prepared to provide me with a position statement on the NICE CFS/ME Guidelines for publication?

Kind regards,

Suzy
Suzy Chapman

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Appendix 1: Two position statements from the ME Association on Graded Exercise Therapy (GET)

1] ME Association position on graded exercise therapy (GET)

Issued Monday 12 May 2008

The ME Association rejects calls being made this week for the number of graded exercise therapists to be increased because we have concerns about both the effectiveness and safety of this controversial approach to management.

The principal ones are set out below:

a GET makes a significant proportion of people with ME/CFS worse.

b One can argue about the percentage of people whose condition becomes worse as a result of GET (ie 30% to 50% in patient questionnaires) but this not just due to a problem with the way in which GET is being delivered. The fact is that a progressive and sometimes rather inflexible increase in physical activity, the key component to a treatment that is based on the scientifically flawed deconditioning model of ME/CFS, is just not appropriate for a significant proportion of people with ME/CFS.

c Any treatment that causes an adverse reaction in 33 – 50% of those using it cannot be recommended as a blanket form of treatment – as is the case in the guideline for treatment of ME/CFS that has been produced by the National Institute for Health and Clinical Excellence (NICE).

d If a drug treatment were causing this level of adverse reactions, then serious questions would have to be asked about its use – certainly by non-specialists.

e The MEA is therefore calling for an urgent review of the NICE recommendation relating to GET – which recommends that everyone with mild or moderate ME/CFS should be automatically offered a course of GET.

f The MEA today launches its own management questionnaire (at: http://www.meassociation.org.uk) as part of a major initiative to produce a multidisciplinary management programme that will focus on individual needs and one that will also be acceptable to the whole patient community.

g In the meantime the only form of activity management that the MEA endorses and recommends is pacing – a process whereby people make very flexible and, where appropriate, gradual increases in both mental and physical activity levels depending on stage, severity and variability of their illness.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

2] Joint Statement by The ME Association and The Young ME Sufferers Trust

Issued Thursday 15 May 2008

The ME Association and The Young ME Sufferers Trust today jointly reject this week’s call for the number of graded exercise therapists to be increased. This is because of our serious concern for the safety of patients given this controversial approach to management.

When patients are made worse by GET (which is based on the flawed concept of deconditioning) this is not merely due to a problem with the way in which the therapy is delivered. Post-exertional malaise is a key diagnostic criterion for ME/CFS. Put simply, the illness worsens as a result of physical and mental effort. Advocating progressive exertion is to show a worrying lack of knowledge about the nature of the illness itself.

Whilst it has been noted that children may be cajoled and persuaded to over-exert themselves, inappropriate levels of activity can only be sustained for a limited period. Do too much and they may suffer severe exacerbation of their condition. We do not consider it responsible for ME charities to promote such treatment for children or adults with ME/CFS.

Furthermore, any treatment that causes an adverse reaction in 33% – 50% of those using it cannot be recommended as a blanket form of treatment, as in the case of the guideline for treatment of ME/CFS produced by the National Institute for Health and Clinical Excellence (NICE). If a drug treatment were causing this level of adverse reactions, serious questions would be asked about its use.

The ME Association and the The Young ME Sufferers Trust are therefore jointly calling for an urgent review of the NICE recommendation that everyone with mild or moderate ME/CFS should be automatically offered a course of GET. We consider this is likely to result in iatrogenic damage to some patients. We have experience of cases that were mild or moderate which became severe with this form of treatment.

The only form of activity management that the ME Association and The Young ME Sufferers Trust can endorse or recommend is pacing a process whereby people modify their levels of exertion as appropriate with the severity and stage of their illness, so as to adapt to the characteristic fluctuations in their condition, maintain a sustainable level of activity, keep symptoms at bay and allow further recovery to take place.

Neil Riley
Chairman The ME Association

www.meassociation.org.uk  

Jane Colby
Executive Director The Young ME Sufferers Trust
www.tymestrust.org

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