Memorandum by Doris M Jones MSc (AL 26)
SUMMARY
Allergic phenomena, such as food allergies or
intolerances, conventional allergies like asthma, hay fever or
urticaria, extreme sensitivities to chemicals and other environmental
factors such as pesticides, and adverse reactions to prescribed
medications, are an integral part of many patients with a diagnosis
of ME (Myalgic Encephalomyelitis), CFS (Chronic Fatigue Syndrome),
FMS (Fibromyalgia Syndrome) or MCS (Multiple Chemical Sensitivities).
Such problems go mainly unrecognised, are usually not acknowledged
or deemed to be psychological by many GPs. Appropriate treatment
within the NHS is all but non-existent and provision in the private
sector scant and often expensive. There is an urgent need for
a thorough re-assessment of necessary specialist treatment centres,
NHS funding and suitable patient support groups.
1. This Memorandum is submitted as an individual.
2. I am an independent researcher and writer,
with a particular interest in the effects of environmental factors
on people's health, in particular on their manifestation as allergic
phenomena in patients suffering from disorders like ME (Myalgic
Encephalomyelitis), CFS (Chronic Fatigue Syndrome), FMS (Fibromyalgia
Syndrome) or MCS (Multiple Chemical Sensitivities). I was also
a Reference Group Member of the CMO's Working Group on CFS/ME
between 1999 and 2001.
3. I first became aware of the fact that
allergic reactions are very common in patients with a diagnosis
of ME or CFS when completing an MSc thesis on these disorders
in 1992. Such reactions consisted of food allergies or intolerances,
conventional allergies like asthma, hay fever or urticaria, extreme
sensitivities to chemicals and other environmental factors like
pesticides, and adverse reactions to prescribed medications. Indeed
they were frequently an integral part of their often unrecognised
health problems.
Almost without exception these patients reported
experiencing extreme difficulties, not only in having these problems
accepted as being real and serious components of their condition,
but even more so in obtaining appropriate treatment, especially
on the NHS.
A subsequent study on patients with a diagnosis
of MCS (Multiple Chemical Sensitivities) provided further information
on the difficulties such patients experienced in having their
health problems acknowledged, recognized and treated:
Details on 76 patients showed that:
(i) on average six GPs were consulted before
a diagnosis was made;
(ii) in 54% of cases six or more practitioners
were seen;
(iii) in 24% of cases a psychiatric diagnosis
was made at least once;
(iv) in 54% of cases practitioners were not
prepared to consider environmental causes for health problems;
and
(v) in 31% of cases their MCS problems were
not being taken seriously.
Frequently these patients were given various
other diagnoses (often multiple), notably ME/CFS/PVFS (Post Viral
Fatigue Syndrome). In a few cases pesticide or chemical poisoning
was acknowledged, and in some health problems were deemed to be
manifestations of depression. Their wide-ranging health problems
in essence were ignored by NHS practitioners. Whilst in a few
cases patients were successful in securing an ECR (Extra Contractual
Referral) to a specialist private clinic for appropriate treatment
of their predominantly allergic problems, most were given inappropriate
treatments or their problems were ignored.
4. There were two notable specialist centres
where some patients were referred to and did obtain appropriate
treatments; one was the Breakspear Hospital, Hemel Hempstead,
under Dr Jean Monro, the other was the Airedale Allergic Clinic,
Keighley, Yorks, under Dr Jonathan Maberly or Dr Honor Anthony
(this Clinic is now closed or may have been demolished). Patients
with pronounced food allergies or intolerances were sometimes
referred to Dr (now Professor) Jonathan Brostoff, then at the
Middx. Hospital, London. There were some other GPs who specialised
in treating patients with pronounced allergic problems, but most
carried out only private treatment, which many patients could
ill afford or not at all. ECRs evidently became increasingly difficult
to secure, with inevitable increasing problems for affected patients.
5. Difficulties experienced by patients
in having their health problems recognized and treated appropriately
in part at least is because articles published in major UK medical
journals like the BMJ or the Lancet have dismissed such problems
as either non-existent or existing only in the minds of individuals
(eg Howard LM, Wessely S: "The Psychology of Multiple Allergy",
BMJ 1993;307:747-48); Howard LM, Wessely S: "Psychiatry in
the Allergy Clinic: The Nature and Management of Patients with
non-allergic symptoms', Clin + Exp Allergy, 1995;25:503-14; and
many others). It is therefore unsurprising that GPs adopt a dismissive
attitude to patients suffering from such allergic problems.
6. Details of my studies have been shown
at international conferences and various meetings. They have also
been submitted to the CMO's Working Group on CFS/ME.
7. I recommend that:
(a) a thorough re-assessment be made
concerning the establishment of specialist centres, where patients
with such health problems can be referred to for appropriate treatment.
(b) ECRs or new equivalent facilities,
be made available to affected patients to enable them to obtain
such treatments from the private sector until such time as the
NHS can provide an equivalent service.
(c) Affected patients can seek advice
from suitable support groups, such as Allergy UK, Action Against
Allergy, MCS International and others and that this information
be made widely available in GP surgeries, Hospitals etc.
8. I will be available to give oral evidence
should this be desired.
May 2004
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