A letter to Sir Andrew Dillon , Chief Executive, NICE

Stonebird
27th July 2017

Sir Andrew Dillon,
Chief Executive,
NICE

Dear Andrew Dillon,

Re : Myalgic Encephalomyelitis

I have cared full time, for 25 years, for my wife who has a diagnosis of Very Severe ME, my Nursing Standard article "Supporting people with severe myalgic encephalomyelitis" is referenced by NICE in the original 2007 guidelines. In 2015 I was third place finalist, BJN, Nurse of the Year, for which I received an award specifically for my work in raising awareness of and advocating for people with Severe ME. I was Secretary of the 25% Severe ME Group charity for many years and represented the Group at the Gibson Parliamentary Inquiry.

In February the Joint Commissioning Panel for Mental Health document published Guidance for Commissioners of services for people with medically unexplained symptoms – practical mental health commissioning, which misinformed Commissioners that Myalgic Encephalomyelitis is a Somatoform, mental health disorder.

The response, in a letter to me, dated March 2nd, from the Co-Chairs of the Expert Reference Group for JCPMH Guide on Commissioning for MUS and the Co-Chairs of the JCPMH claimed that the: "The content of the MUS guide is fully in line with NICE guidelines and with current practice. Should the relevant NICE guidelines alter, or the evidence in this area change, then we will revise the guide accordingly."

On March 15, NICE assured me that CG53 does not list ME as a somatoform disorder. Therefore the MUS guidelines cannot be correct.

I raised the misinformation in the JCPMH Report with the Department of Health, who confirmed that the Government recognises the WHO classification of ME as a neurological disease. They advised me to take the issue up personally with you.

I am interested to know what you can do to correct the misinformation that the JCPMH has given to Commissioners, especially given the serious potential implication in regard to the current consultation on CG53?

I also have the following questions, given that NICE has confirmed that it does not consider ME to be a Somatoform Disorder:

1. Can you tell me why NICE itself lists ME under "Depression and anxiety disorders" on the IAPT webpage and can you reassure me that it will be removed? That surely is as great a misrepresentation of ME as the JCPMH document, especially given the recognition in CG53 that “ the physical symptoms can be as disabling as multiple sclerosis, systemic lupus erythematosus and congestive heart failure .”
 https://www.nice.org.uk/about/what-we-do/our-programmes/nice-advice/iapt

2. Can you explain the nature of IAPT’s involvement in ME, especially in light of the the CDC’s recent decision not to recommend CBT and GET? http://www.meassociation.org.uk/2017/07/cdc-removes-cbt-and-get-as-recommended-treatments-for-mecfs-11-july-2017/

3 Can you tell me what role, if any, IAPT played in the drafting of the recent CG53 Surveillance Document, which has been heavily criticised by all major ME Charities and thousands of patients for:
  •  its adherence to the widely disputed CBT/GET paradigm, which has been shown to make patients, especially the most severely affected, much worse. http://stonebird.co.uk/psurvey.pdf
  •  its many references to the universally discredited PACE Trial
  • its reliance upon vague diagnostic criteria that do not clearly identify or separate ME from mental health Chronic Fatigue (WHO F48). A wide definition helps no one; surely it is time to acknowledge that ?
  •  its scant regard for biomedical evidence
  • · its extraordinary decision not to update the 10 year old guidance which not only was condemned as “unfit for purpose” at the time, but continue to deny patients, like my profoundly physically ill wife, equal access to health care
  • its failure to accurately represent international clinical practice
  •  its failure to remove outdated treatment recommendations and its pronounced self-circular psychiatric bias.


4. I am very curious to know the composition of the Topic Experts and their knowledge base and impartiality. What biomedical representation, if any, did you have? What clinical input, outside of the biopsychosocial school, was involved for unbiased appraisal of the biopsychosocial content? Can you tell me who the Topic Experts were? Were any of the Royal College’s
involved?

5 Can you tell me why NICE only gave stakeholders two weeks to respond to the 56 page Surveillance document, making it incredibly difficult for those people who have ME themselves or full time carers, to have enough time to contribute adequately or at all.

6 Can you explain why NICE has relied heavily on an unfounded psychiatric theory of ME that is nothing more than that, with no real evidence itself, while ignoring the more than 9000 published papers that have been published world wide, detailing the biomedical abnormalities in ME?

7 Can you explain, given the statement in 2014 by Professor Mark Baker, Director of the Centre for Clinical Practice, at a Forward- ME meeting, that the Guideline failed to address the real issues in ME/CFS, does not promote innovation and has had a disappointing impact on specialist care and commissioning issues, why NICE has continued to stick to its outmoded, inappropriate, dangerous guidance?

http://www.meassociation.org.uk/2014/07/forward-me-meeting-and-the-nice-guideline-on-mecfs-statement-by-the-me-association-10-july-2014/

The Surveillance document does nothing, in my opinion, to challenge the misperception that ME is a mental illness, in fact it's decision to come off the static list, not for medical reasons, but because of the FITNET CBT/GET Trial reinforces the apparent psychosocial bias of the whole document and attitude of NICE.
If CG53 continues to contribute to a situation where people with ME are:

  • misinterpreted as having a mental health issue
  •  where biomarkers are not sought for and relevant tests are proscribed
  • where health professionals of every level are misinformed and their awareness skewed wrongly towards a biopsychosocial interpretation of a serious physical disease with ignored multi-system dysfunction, endangering lives and leading to mistreatment, misinterpretation, neglect and harm
  • where the guidance on Severe ME fails to recognise the terrible suffering and multiple physical symptoms patients experience, making it dangerously irresponsible. http://www.stonebird.co.uk/principles%20of%20care.pdf
  •  where ME is still not separated from and confused with mental health Chronic Fatigue and other poorly diagnosed diseases
  •  where services are geared towards a psychiatric diagnosis of wrong illness thought and deconditioning
  •  where patients are offered treatments that are inhuman, cruel, inappropriate and dangerous, because they are in direct denial of their physical reality- the potential for harm is enormous and terrifying in ME


then surely that is in contravention of your obligations under the Human Rights Act and the Equality Act?

The ME Community has been insisting for years that CG53 is not and never has been appropriate for patients with Myalgic Encephalomyelitis; the way forward is for ME to have its own biomedical Guideline and pathway, categorically without psychiatric interpretation and involvement.

Sincerely,

Greg Crowhurst
http://www.stonebird.co.uk/







Comments

Post a Comment

Popular posts from this blog

When I am 64 and other false positives : The PACE Trial.

Image
Greg Crowhurst 6 th February 2013 “Much of what we think we know based on conventional statistical studies published in the academic literature stands a good chance of just not being  so “  Roger Pielke Jr http://rogerpielkejr.blogspot.co.uk/2012/03/false-positive-science.html Imagine  I am a psychiatrist and for £5 million, say ,  I want to prove that CBT and GET are a safe and useful treatment  for ME. The good news is “ how unacceptably easy it is to accumulate (and report) statistically significant evidence for a false hypothesis ,  according to Nelson and  Simonsohn (2011).  Their frightening  paper “ False-Positive Psychology, ” shows  how  “ undisclosed flexibility in data collection and analysis allows presenting anything as significant ,” .  In fact Nelson and Simonshon statistically  “prove” that listening to “ When I am 64 ” by the Beatles can   make you a couple of years young...
Read more

Paralysis, a qualitative study of people with Severe Myalgic Encephalomyelitis

Image
Greg and Linda Crowhurst (August 8 th 2013). Synopsis Paralysis is a symptom that is rarely highlighted in the literature for ME, yet is found amongst the most severely ill ME population and even some of those not so severely affected. My wife has experienced it for almost 2 decades, without adequate exploration, alongside exposure to denial and dismissal, ignorance and neglect as well as harmful treatment. We wanted to find out if there was anyone else with a similar experience to my wife's or if she was a rare and very severe case. We wanted to highlight the seriousness of this symptom and ask why it is being ignored and down played not only by the medical profession, with its inappropriate focus on fatigue and the psychosocial response, but also by the main charities, none of whom, flag it up as a main symptom. This qualitative research study indicates that there are significant others experiencing apparently similar paralysis and that my wife is not un...
Read more

DO NO HARM, DO NO BETRAYAL

Image
By Diane  I'm not sure where to start but this is my story so far.  My name is Diane and I'm a carer for my adult daughter, Lili, who is completely bedbound with very severe myalgic enceplalomyelitis.  For Lili, M.E. didn't come slowly.   It very rudely crashed into her life and very quickly stole her health, taking bigger and bigger chunks of it as she deteriorated.  It all began when she experienced a gastric-flu virus of a sort she had never experienced before because this time she never regained her health.  A couple days later, she woke up with agonising head pain 'like her brain was on fire', with severe neck pain – she also couldn't move her neck, and her whole body was paralysed.  She's not sure how long she stayed like this as she was in and out of consciousness but she truly felt that she was going to die because her body was undergoing an extreme crisis.  To cut a long story short, it took a year to get a diagnosis durin...
Read more