Kathleen McCall, Chairman Invest in ME:
Letter to the Author of "New GP Guidelines for Chronic Fatigue Syndrome" - published in Innovait, 8 July 2011
InnovAiT is a journal published monthly as a benefit of AiT membership of the Royal College of General Practitioners. Associates in Training of the RCGP receive a free subscription to the journal as part of their AiT membership of the College. The journal "promotes excellence in primary care and quality education". InnovAiT "supports and assists the learning and development of AiTs as they progress through training".
In Invest in ME's view these guidelines contain potentially dangerous and negligent views about this disease.
See also: Is ignoring clinical evidence The Way Ahead for the RCGP and Prof Christopher Ward ?
To: Dr Jeremy C Gibson
Dear Dr Gibson,
Invest in ME is a UK charity which seeks to educate about Myalgic Encephalomyelitis (ME).
We are advocates of better education regarding ME.
Invest in ME is concerned about the inaccuracies of the guidance published in InnovAiT which has far reaching consequences for the care of patients diagnosed with ME. [1]
The guidance states:
“In this article, we outline GP management of chronic fatigue syndrome (CFS), the condition also known colloquially in the UK as ‘ME’.
The paper is based on National Institute for Health and Clinical Excellence (NICE) guidelines and also incorporates evidence-based strategies available to specialist services. GPs are well placed to make an early diagnosis of CFS and give patients helpful advice to manage their fatigue, hopefully avoiding multiple inappropriate referrals to specialist medical clinics.”
ME (myalgic encephalomyelitis) is not a colloquial term for CFS.
It is the official term used by the WHO in its classification of ME as a neurological illness in ICD10-G93.3 as you quite rightly refer to later in your text.
ME should not be confused with TATT (tired all the time) or fatigue syndrome which has its own classification in (F48) and it would be helpful if these conditions were not mixed with ME.
It is also quite astonishing that you do not see the value in referring ME patients who suffer from a multisystem neurological illness to any specialists and trust GPs being knowledgeable enough in making a diagnosis within their short consultation time constraints.
ME is not medically unexplained. Professor Anthony Komaroff from Harvard Medical School, USA has collated ten simple facts which clearly show the biological basis of ME. [2]
The NICE guidelines ignored all biomedical evidence on the pretence that looking at the biomedical research on ME was outside their remit.
In July 2011 a group of experienced clinicians and researchers representing 13 countries published criteria for ME in the Journal of Internal Medicine.
They state:
“The label "chronic fatigue syndrome" (CFS) has persisted for many years because of lack of knowledge of the etiological agents and of the disease process. In view of more recent research and clinical experience that strongly point to widespread inflammation and multisystemic neuropathology, it is more appropriate and correct to use the term "myalgic encephalomyelitis" (ME) because it indicates an underlying pathophysiology. It is also consistent with the neurological classification of ME in the World Health Organization's International Classification of Diseases (ICD G93.3).” [3]
The RCGPs, with this guidance, is spreading misinformation with the document in this form and Invest in ME would like to ask you to request that the RCGPs remove ME from the mental health section in the GP Curriculum and place it in its correct section of neurological illness.
This should be performed immediately.
The RCGPs states that it “will always speak up in support of doctors in general practice and the improvement of patient care” and “aims to build stronger relationships between patients and their doctors, and ultimately give patients a say in the development of general practice.”
By continuing to classify ME incorrectly the RCGPs is not only compromising the health of patients – it is also compromising the work of healthcare staff and is guilty of extreme negligence.
After Invest in ME’s 2011 International ME conference in London in May one GP wrote to us saying that they were amazed at the science being presented and had never heard of some of it before the conference.
This demonstrates a vacuum in GP education regarding ME.
We are more than happy to send you the conference DVD that demonstrates that ME is a multisystem organic illness and not a mental illness and it would be extremely helpful for ME patients if the GPs in the UK were made aware of this information.[4]
In fact we have six years of CPD-accredited conferences, all documented on our DVDs, which are available for you and your members.
Yours Sincerely,
Kathleen McCall
Chairman Invest in ME
Charity Nr. 1114035
www.investinme.org
References :
1. http://www.oxfordjournals.org/our_journals/innovait/about.html
http://tinyurl.com/5snyp2l
2. Komaroff, A. Ten Discoveries about the Biology of CFS. The CFIDS Association of America. http://www.cfids.org/about/10-discoveries.pdf
3. Carruthers BM, van de Sande MI, De Meirleir KL, Klimas NG, Broderick G, Mitchell T, Staines D, Powles AP, Speight N, Vallings R, Bateman L, Baumgarten-Austrheim B, Bell DS, Carlo-Stella N, Chia J, Darragh A, Jo D, Lewis D, Light AR, Marshall-Gradisbik S, Mena I, Mikovits JA, Miwa K, Murovska M, Pall ML, Stevens S. Myalgic Encephalomyelitis: International Consensus Criteria. J Intern Med. (2011 Jul 20).
4. Invest in ME. International ME/CFS Conference 2011 DVD. http://tinyurl.com/4xj3fmz
See also: Cerebrospinal fluid profiles can differentiate between Lyme disease, ME/CFS and healthy controls
See also: Harvard Medical School: EEG spectral coherence data distinguish chronic fatigue syndrome patients from healthy controls and depressed patients
See also: Post-exercise acid exposure 50 times higher in ME/CFS patients vs healthy controls, with no reduction with repeat exercise
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