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NICE does not list ME as a Functional Somatic Disorder


In their  letter to me dated March 2nd,the Joint Commisioning Panel for Mental Health  (JCPMH) claim that their "Guidance for commissioners of services for people with medically unexplained symptoms" which lists Myalgic Encephalomyelitis as a "Functional Somatic Disorder", in other words a mental disorder,  is "in line  with NICE guidelines and with current practice."

That is simply wrong.

I wrote  to NICE on March 13  to clarify whether the JCPMH Report is correct in stating that  ME is a somatoform disorder.  They confirmed (March 15) :

"Thank you for contacting the National Institute for Health and Care Excellence (NICE) regarding our guideline chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy): diagnosis and management (CG53)

We have not listed ME as a functional somatic disorder in the above guideline and unfortunately I am unable to comment on the report issued by the Joint Commissioning Panel for Mental Health."

It is a profoundly serious issue that the JCPMH, while claiming to act in accordance with NICE, has misinformed Commissioners that ME, a WHO Classified Neurological Disease is a "Functional Somatic Disorder."

The JCPMH needs to notify Commissioners immediately  that its guidance is wrong.

It also needs to withdraw  Myalgic Encephalomyelitis  from its wholly inappropriate  inclusion in  :"Guidance for commissioners of services for people with medically unexplained symptoms."

The implications for patients, of this wrong classification,  are vast and unquantifiable.

None of the big ME Charities, however, seem to be doing anything about getting the JCPMH Report retracted.

Greg Crowhurst

Ref :

http://www.jcpmh.info/good-services/medically-unexplained-symptoms/

25% Group and Stonebird Response to BACME article on care provision for severe ME.

Response to BACME  (British Association for ME/CFS) Working Group on Severe CFS/ME  Shared Clinical Practice Document Version 1

When you work with someone who has Severe ME you need to be more sensitive and aware than you can possibly imagine. Harm, even death for some, may follow poor treatment, care and ignorance.

 The frailty of someone with Severe/Very Severe ME cannot be exaggerated nor adequately described. You need to take the greatest of care.

The problem with this BACME document is its underlying psychosocial values and attitudes. If you expect a person to get better, that will be your intention, that will be your goal, that is going to influ-ence all your thoughts and actions in your caring role, especially if you set goals or limit care over time.

The care provided by someone with a biomedical understanding of Severe ME is going to be funda-mentally different, however much the starting point of care might appear to be similar in this docu-ment, to the person who has a psychosocial approach to, because of the opposing underlying values and attitudes.

The most important aspect of caring for a person with Severe Myalgic Encephalomyelitis (ME) is the 'how' of caring; the basic core beliefs the carer has about caring and the person to be cared for. What the carer
believes will subtly or overtly impact on how caring is provided and has a huge affect on the relation-ship, quality of care and health of the person receiving the care.

Great harm can be done by someone who is not fully aware that the person with Severe ME is serious-ly physically ill and that they are not going to be “made well” by changing their thoughts or increasing their activity in a graded way, as this dangerous document from BACME suggests.

The basic principles behind Severe ME-aware care are :

1. Never define the person by their behaviour.

2. Acknowledge the serious and severe physical illness underlying the person’s symptom expe-rience.

3. Adhere to a strictly defined definition of ME ( the ICC).

4. Honour the WHO classification of ME as a neurological disease and respond appropriately and equally as in any other recognised neurological disease.

5. Treat the person with respect on all levels; respect for the way interaction occurs, the physical and the cognitive limitations enforced on the person by their severely disabling multi-system dysfunction.

6. Honour what the person says regarding their physical and cognitive needs.

7. Listen to the person and to only interact at the correct time in the correct way. We call this the MOMENT approach, honouring the severe illness the person has whilst maximising the oppor-tunity to engage safely in order to help, not harm them, when undertaking all care needs. (Crowhurst 2015)

8. Understand any hypersensitivity issues (chemical, drug, touch, noise, light, movement, mo-tion, food); never ignore, undermine, negate or belittle them, recognising the danger of the ordinary environment as real, not just perceived.

9. Understand and comprehend that the person with Severe ME is not experiencing the world the same way as a well person and cannot fit into the demands and obligations imposed on them by others, easily or at all. A flexible, knowledgeable, sensitive, compassionate, non-judgmental, person-centred not goal oriented approach at all times is critical. Being aware of the after impact of any interaction is essential; that even something once achieved cannot nec-essarily be achieved or tolerated again or regularly or increased.

10. Recognise the irrelevance, unhelpful and dangerous nature of a psychosocial response and in-terpretation of Severe ME, a physical disease. Psychiatry has no right to first hand interven-tion in this disease which requires a biomedical response and care pathway .

It is vital to ensure that that you never put any overt or covert pressure, demand or expectation to im-prove, upon the person with Severe ME, nor any underlying belief that is in opposition to the truth and severity of the disease and very real lack of valid treatment and cure.

In ME when you push yourself you deteriorate, whether immediately or delayed, if you push too hard you may even enter worse illness experience than you have already experienced, beyond which you may not be able to recover from at all or only partly. The depth and level of physical and cognitive deterioration and harm that can follow is literally unimaginable before it occurs. The impact can be permanent or very long term.

There are many good observations and insights into the reality of Severe ME in this document; but its expectations of recovery that could impose unreasonable, unrealistic, even fatal demands, render it extremely dangerous.

Anyone who believes the message that people with Severe ME can do more than they physically can, by thought and activity, even if only over time, no matter how genuinely they believe it or how nice they are or how encouraging they are, can so easily do untold harm because they will exact subtle if not overt pressure, however kindly, upon the person to improve.

A carer following this guide, we fear, is unlikely to be able to separate care from treatment, to com-prehend the importance of flowing with the person, just to help them cope, rather than set goals for “recovery” , however seemingly small from the well perspective nor appreciate the long term com-mitment just to improve quality of life and comfort rather than quality of thought and ability.

There is no place for complacency, mediocrity or carelessness in the life of someone with Severe ME. A carer’s interventions can cause serious harm to the person's health. As the PACE and FINE Trials have shown, the psychosocial approach that this guide is constructed upon, is bound to fail and not just fail but cause real harm. (Vink 2017). It must be

Viewed within its psychosocial context, this document cannot possibly be recommended for anyone with WHO G93.3 defined Myalgic Encephalomyelitis.

References

Crowhurst G (2016) The MOMENT Approach http://stonebird.co.uk/main/index.html

BACME Working Group on Severe CFS/ME Shared Clinical Practice Document Version 1 (2017) http://measussex.org.uk/severely-affected-guidelines-february/

Vink M (2017) Assessment of Individual PACE Trial Data: in Myalgic Encephalomyeli-tis/Chronic Fatigue Syndrome, Cognitive Behavioral and Graded Exercise Therapy are Inef-fective, Do Not Lead to Actual Recovery and Negative Outcomes may be Higher than Report-ed. J Neurol Neurobiol 3(1): doi http://dx.doi.org/10.16966/2379-7150.136

Will you speak out ?

The mislabeling of ME as Functional Somatic Disorder, in other words a mental health issue in the recently published 'Joint Commissioning Panel for Mental Health (JCPMH) Guidance for Commissioners of services for people with medically unexplained symptoms', could not be more serious.

(http://www.jcpmh.info/resource/guidance-commissioners-services-people-medically-unexplained-symptoms/)

Left unchallenged the JCPMH Report is bound to have a damaging impact upon medical understanding and service provision.

I have made a complaint to the Royal College of psychiatrists, raising pertinent facts that show ME is a physical disease, classified by the WHO  as a neurological disease.

In response to my complaint, I  have received a letter  signed by the Co-Chair, Expert Reference Group for JCPMH Guide on Commissioning for MUS, Co-Chair, Expert Reference Group for JCPMH Guide on Commissioning for MUS, Co-Chair, Joint Commissioning Panel for Mental Health Royal College of Psychiatrists and the Co-Chair, Joint Commissioning Panel for Mental Health
Royal College of General Practitioners , claiming  that the guide's content  is "fully in line with NICE guidelines and with current practice'.

NICE does not list  ME as a functional somatic disorder.(See the Comments on NICE by Maraget Williams.

http://www.meactionuk.org.uk/Comments_on_the_NICE_Guidelines.htm

Every ME Charity, every ME organisation all concerned individuals must vigorously protest this unfounded, blatant  labeling of ME as mental health disorder.

The Report has already been disseminated, with very little protest from the ME Community,  to NHS  Commissioners.

I have posted a guide to the issues on Stonebird which might be of help:

http://carersfight.blogspot.in/2017/03/why-me-must-be-removed-from-jcpmh.html

Of particular concern is the apparent endorsement of the JCPMH report by so many major UK mental health organisations plus the Royal College of Nursing. I have been in touch with some of them and they, to their credit,  are also raising concerns.

Will you join me in speaking out about the misinformation ?

Please write to the Royal College of Psychiatrists, please write to as many of the organisations whose logo appear on the Report as you can.

Why ME must be removed from the JCPMH Report : Guidance for Commissioners of Services for People with Medically Unexplained Symptoms

The Joint Commisioning Panel for Mental Health has recently published "Guidance for commissioners of services for people with medically unexplained symptoms,
specifically listing Myalgic Encephalomyelitis as a "Functional Somatic Disorder".

This is not the first time that an incorrect reclassification has been attempted. In October 2001 an attempt was made to have ME ‘unofficially’ reclassified, as a mental disorder in a U.K adaptation of a WHO publication, the ‘WHO Guide to Mental Health in Primary Care’, developed by the Collaborating Centre of the Institute of Psychiatry, London and included under the classification F48.0 “Unexplained medical symptoms.” 

After a reprimand from the WHO, an erratum was eventually issued, acknowledging that the wrong classification.



For anyone wishing to challenge this report, the following may be of interest.


Background


Myalgic Encephalomyelitis (ME) has been recognised by the World Health Organisation since 1969 as an organic neurological disease, classified under ICD code G93.3. ME patients report worse pain than patients with rheumatoid arthritis or multiple sclerosis, conditions in which pain is recognised as a major symptom (Marshall et al 2010).

ME has a greater impact on functional status and well being than other chronic diseases such as Cancer, (Nacul et al 2011). In 1986 Ramsay, who followed many of those who fell chronically ill during an 955 epidemic for up to 34 years, until he died in 1989 (Hyde 1998), commented: “the too facile assumption that such an entity-despite a long series of cases extending over several decade -can be attributed to psychological stress is simply untenable.”

There was a time before the mid-1980' s, when ME was taken so seriously that an ME Bill was put before Parliament. The Bill required an annual report to Parliament: ' It shall be the duty of the Secretary of State (for Health) in every year to lay before each House of Parliament a report on the progress that has been made in investigating the causes, effects, incidence and treatment of the illness known as ME.'

Hansard (House of Commons) for 23rd February 1988 at columns 167-168 records: ' There is no doubt that ME is an organic disorder. The sufferers are denied proper recognition, misdiagnosed, vilified, ridiculed and driven to great depths of despair. ' (Williams 2010)

Way before the involvement of the psychiatric lobby ME was properly seen as the major public health risk that it is. For almost three decades, the psychiatric lobby despite the failure of scientific research to reveal any specific biological marker for any psychiatric diagnostic category, has dismissed the international biomedical evidence that ME, insisting that it is a mental (behavioural) disorder which can be cured by graded exercise and “cognitive re-structuring”. (Williams 2017)

There are now over 9,000 peer-reviewed articles describing the complex biomedical pathology of ME, yet this powerful group of psychiatrists, with "fixed views" who "torture data" (Vink 2017), continues to believe and assert that ME is an “aberrant illness belief” and that all patients with ME are really suffering from a mental illness, ie. somatisation.

Their so-called "biopsychosocial model" a " prime example of assumption and opinion-based medicine at a time when medicine should be evidence-based", (Vink 2017) is based on the assumption that individuals are suffering from maladaptive thinking. Their symptoms, the psychiatrists argue, are "not symptoms of illness but merely symptoms of deconditioning."

ME is not a Functional Somatic Syndrome (FSS)


A diagnosis of Functional Somatic Syndrome is a serious matter; the implications of misdiagnosing a serious neurological illness as a neurotic illness hardly bear thinking about.(cf Kemp 2012)

Myalgic Encephalomyelitis (ME) is listed in the International Classification of Diseases (ICD), chapter 6, under Disorders of Brain at ICD-10 G 93.3. It is not classified as a mental health disorder.

Following publication of the International Consensus Criteria in 2011, the Consensus Panel, a group of doctors with over 500 collective years experience of studying and treating more than 50 000 people with ME, issued a one stop, user-friendly reference in 2012 known as the Primer (Carruthers B et al 2012), that specifically targets primary care physicians and specialists in internal medicine. It very strongly affirms that ME is not CFS and outlines many underlying biological abnormalities that are present more often in patients with ME.

The involvement of psychiatry in ME, however, has lead to a situation where physical causes are not sought and even argued against or positively proscribed. The tests required to prove the disease are not being widely offered , developed or easily developed. People with ME are trapped in a cycle where their physical disease is denied and where this is seen as justification of Functional Somatic Syndrome label. It is the perpetrators of the psychosocial paradigm who have helped create this nightmare environment, by their misinterpretation of ME.

A “Functional Somatic” interpretation of ME creates a chicken and egg situation where you have to have the tests to prove you are ill, but the psychiatrists have denied you those tests , so you will not have the proof to prove you are ill.

Yet wanting to have the tests or being concerned about your health, because of your symptom severity, is seen as "maladaptive thinking" and proof of Functional Somatic Syndrome; in that sense a diagnosis of Functional Somatic Syndrome sets up a vicious self-fulfilling circle, endangering the lives of people with ME, especially the most severely affected.

In the current climate patients with ME are massively at risk of having their physical reality denied.
In 2015 the influential USA Institute of Medicine, stressed that ME is a medical, not a psychiatric or psychological illness.(IOM 2015)

The National Institute of Health ( USA) concluded in 2015 that the criteria the psychiatrists use, the Oxford Criteria are flawed and should not be used anymore.

Last year the USA Agency for Healthcare Research and Quality, found no evidentiary basis for the use of CBT/GET in ME.(Johnson 2016)

In the UK the controversial PACE trial, the largest Cognitive Behavioral Therapy (CBT) and Graded Exercise Therapy (GET) trial for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) conducted thus far, has dominated and influenced policy, however recently it has been exposed as a failure, there was no “recovery” and up to 96% of participants may have had their health adversely affected . (Vink 2017)

The ME Association, based upon member’s experience has explicitly stated that CBT and GET have no role to play in the management of ME (MEA 2015)

The 25% Group and Stonebird surveys (Crowhurst 2005 and 2007) of the most severely affected, for example, showed that 95% of members were made worse by Graded Exercise and Cognitive Behaviour Therapy.

In a joint statement Stonebird and the 25% Group called for the removal of psychiatry from front line involvement in ME. (25% Group)

ME has no place in this document.

That needs raising far and wide.


References


25% Group Rightly Outraged http://www.25megroup.org/info_news.html

Bell and Lapp (1999). Letter to the editor of the Annals of Internal Medicine. Newsletter AAFCFS, Aug/Sep. 1999.


Carruthers B et al (2012) Myalgic Encephalomyelitis - Adult & PaediatricInternational Consensus Primer for Medical Practioners International Consensus Panel
http://www.hetalternatief.org/ICC primer 2012.pdf

Crowhurst (2005/7) Severe ME Patient Surveys http://stonebird.co.uk/psurvey.pdf

English (1999)Letters responding to Wessely et al. Lancet 1999, 354, 2078-9.

Hyde B ( 1998) Are Myalgic Encephalomyelitis and Chronic Fatigue Syndrome Synonymous Terms? Nightingale Research Foundation Paper Presented by Byron Marshall Hyde M.D. - New South Wales, February 1998 http://www.nightingale.ca/ICaustralia2.html

Institute of Medicine(2015) Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
Redefining an Illness https://www.ncbi.nlm.nih.gov/books/NBK274235/

Johnson C (2016) Federal Report Says Theres (Almost) No Evidence CBT/GET Work in Chronic Fatigue Syndrome (ME/CFS) https://www.healthrising.org/blog/2016/08/18/federal-report-says-almost-no-evidence-cbtget-work-chronic-fatigue-syndrome-mecfs/

Kemp P (2012) DSM-5 Somatic Symptoms Work Group submissions 2012: Last chance to tell SSD Work Group why it needs to ditch flawed, unsafe and unscientific proposals.
Submission from Peter Kemp, UK advocate http://dxrevisionwatch.wordpress.com/

Marshall E, Williams M (2006) INQUEST IMPLICATIONS? http://www.meactionuk.org.uk/Inquest_Implications.htm

Marshall R et al (2010) Pain Characteristics of People with Chronic Fatigue Syndrome June 2010, Vol. 18, No. 2 , Pages 127-137 (doi:10.3109/10582452.2010.483966) Journal of Journal of Musculoskeletal Pain http://informahealthcare.com/doi/abs/10.3109/10582452.2010.483966


Nacul et al (2011) The functional status and well being of people with myalgic encephalomyelitis/chronic fatigue syndrome and their carers. Public Health. 2011 May 27;11:402 http://www.ncbi.nlm.nih.gov/pubmed/21619607


Pall ML(2007) Explaining Unexplained Illnesses, Disease Paradigm for Chronic fatigue Syndrome , Multiple Chemical sensitivity, Fibromyalgia, Post-traumatic Stress Disorder, Gulf War Syndrom and Others Harrington Park Press, New York and London pp189/90

Vink M (2017) Assessment of Individual PACE Trial Data: in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, Cognitive Behavioral and Graded Exercise Therapy are Ineffective, Do Not Lead to Actual Recovery and Negative Outcomes may be Higher than Reported. J Neurol Neurobiol 3(1): doi http://dx.doi.org/10.16966/2379-7150.136

Williams M(2009) ME/CFS: TERMINOLOGY http://www.meactionuk.org.uk/ME_CFS_TERMINOLOGY.htm

Williams M (2010) Evidence that the official UK position is that ME/CFS is a neurological disorder http://www.mecfsforums.com/wiki/Evidence_that_the_official_UK_position_is_that_ME/CFS_is_a_neurological_disorder

Wiliams M(2017) The Power of Propaganda ? http://www.margaretwilliams.me/2017/power-of-propaganda.pdf