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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:
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“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:
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“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 :
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1. |
http://www.oxfordjournals.org/our_journals/innovait/about.html
http://tinyurl.com/5snyp2l
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2. |
Komaroff, A. Ten Discoveries
about the Biology of CFS. The CFIDS Association
of America. http://www.cfids.org/about/10-discoveries.pdf
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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). |
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4. |
Invest in ME. International ME/CFS
Conference 2011 DVD. http://tinyurl.com/4xj3fmz |
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