DORIS M JONES MSc
May 2004
MEMORANDUM TO THE HEALTH COMMITTEE
SUBMISSION FOR YOUR NEW INQUIRY:
THE PROVISION OF ALLERGY SERVICES
(Health Committee Press Release 29.4.2004)
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 6 GPs were consulted before a diagnosis was made;
ii)
in 54% of cases 6 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;
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 (e.g. 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.
8.
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.
I will be available to give oral evidence should this be desired.
Doris M Jones.
Please Note: These details were printed in Vol.II of the Health Committee’s Report on ‘The Provision
of Allergy Services’ – Sixth Report of Session 2003-04 (HC696-II), published on 2.11.2004, Ref.
AL26, documented as Ev 120-121.