group believes that the MRC should be more open-minded in their
evaluation of proposals for biomedical research into CFS/ME and
that, in order to overcome the perception of bias in their
decisions, they should assign at least an equivalent amount of
funding (£11 million) to biomedical research as they have done to
psychosocial research. It can no longer be left in a state of flux
and these patients or potential patients should expect a resolution
of the problems which only an intense research programme can help
resolve. It is an illness whose time has certainly come.
Thus concludes the report from Dr
Gibson’s Group on Scientific Research in to Myalgic Encephalomyelitis (ME) –
otherwise known as the Gibson Inquiry. Unfortunately, that time is too late for
some of the victims who have lost their lives to this devastating illness.
Invest In ME welcomes the broad
message of this parliamentary report and thanks Dr Gibson and his group for all
their efforts. The Inquiry calls for this illness to be given due recognition,
alongside heart disease and cancer. It also calls for ring-fenced money for
bio-medical research as happened with AIDS. ME in fact affects five times as
many people as does AIDS but can have a much more devastating impact on quality
of life. The Inquiry recommends that research must be made a priority and
suggests that £11 million should be made available for research to redress the
balance in an illness where too much emphasis has been put on psychological
“coping strategies”. The Inquiry accuses the MRC of merely “paying lip-service”
to the call for bio-medical research.
Invest In ME feel it is a relief
that at last a government body is acknowledging that ME is a severe,
incapacitating, illness and that those who suffer from it, as well as their
carers and families, may have their lives completely ruined. We have been asking
for a long time for very simple, common-sense things such as the adoption of
comprehensive diagnostic criteria and epidemiological studies. We are delighted
that this report agrees that this is vitally important.
This report does not stint in its
criticism of the Medical Research Council and NICE. Indeed, it warns that NICE
should rethink very carefully one of its recommended treatments, Graded Exercise
Therapy (GET) because there is evidence that in 80% of M./E. sufferers there is
diastolic cardiomyopathy. Invest in ME has warned NICE only last week that by
recommending GET they would put patients lives at risk, and risk Judicial
Review. We can only hope that NICE will take notice.
Invest In ME also welcomed the
call for an independent scientific committee to be established to oversee all
aspects of research, as well as an inquiry into the vested interests of
insurance companies whose advisors also act as advisors to the DWP. Dr Gibson’s
Group recommends an investigation of these vested interests by a standards
committee because too often, it states, patients have to live with the double
burden of fighting for both their health and their benefits.
Invest in ME now believe that we
must move forward and ensure that people are correctly diagnosed with this
illness and that doctors and scientists treat patients knowing and accepting
that they have a genuine and serious illness.
Invest in ME
now ask that the government and MRC take this opportunity and work with the ME
community and biomedical researchers to ensure that this illness can be
understood, that proper biomedical research is funded and that archaic and
unjust perceptions by government departments, sections of the health service and
those responsible for deciding funding strategy are once and for all discarded.
This is an
opportunity to benefit patients and find a cure for this illness.
Invest in ME
ask the government to ensure that this opportunity is not lost and that yet
another generation of UK citizens is not abandoned.
Some highlights from the Inquiry report -
The Group calls for a further Inquiry into the Scientific Evidence
for CFS/ME by appropriately qualified professionals. This Inquiry
should be commissioned by government undertaken by an independent
panel of scientific and medical experts, including virologists,
immunologists, biochemists etc who can objectively assess the
relevance and importance of the international scientific data.
The NICE draft guideline makes little reference to
the possibility of viral investigation in ME patients.
The Group recommends, firstly, that these studies and
others like them must be examined by an independent scientific
advisory committee such as the one proposed above. Secondly, many of
the studies we received were conducted on a very limited scale and
their findings need to be confirmed or refuted by large scale
investigation. Until this happens, the field will remain confused.
Provision of resources for biomedical research is
urgently needed. The committee would like to see a similar
arrangement to the AIDS programme funded previously by the MRC.
The MRC should do more to encourage
applications for funding into biomedical models of ME.
The Groups feels that patients with CFS/ ME, which is often an
extremely long term condition, should be entitled to the higher rate
DLA. The sooner there is a biomedical model of assessment for this
illness the better.
There have been numerous cases where advisors to the DWP have also
had consultancy roles in medical insurance companies.
Particularly the Company
UNUM Provident. Given the vested interest private medical
insurance companies have in ensuring CFS/ME remain classified as a
psychosocial illness there is blatant conflict of interest here.
The Group find this to be an area for serious concern and recommends
a full investigation of this possibility by the appropriate
standards body. It may even be that assessment by a medical ‘expert’
in a field of high controversy requires a different methodology of
ME and CFS have been defined as neurological illnesses by the World
Health Organisation. Various clinical and epidemiological research
studies in countries around the world have suggested CFS/ME to have
a biomedical cause. The UK has not been a major player in the global
progress of biomedical research into CFS/ME. Although some
interesting biomedical research has been done in the UK precedence
has been given to psychological research and definitions. The Group
believes the UK should take this opportunity to lead the way in
encouraging biomedical research into potential causes of CFS/ME.
No representative who appeared at the Oral Hearings proposed CFS/ME
was entirely psychosocial. So why has this model taken such a
role in the UK?
The MRC should call for research into this field
recognising the need for a wide ranging profile of research. The
committee would like to see a similar
arrangement to the AIDS programme funded previously by the MRC
It is recommended that NICE should rethink very carefully one of its
recommended treatments, Graded Exercise Therapy (GET), because there
is evidence that in 80% of ME sufferers there is diastolic
It is recommended that ME be recognised as one which requires an
approach as important as heart disease or cancer. There is no
evidence it is a purely psychosocial
The challenge now will be to harness the momentum generated by this Inquiry
to proceed with proper funding for biomedical research and a will to find
a cure for this illness.
expectation for such an Inquiry is that the plight of people with ME is
recognised and that we make progress in treating the illness properly. This
includes proper funding of biomedical research into the aetiology of the illness
and in developing diagnostic tests to ensure that ME is not treated as a dustbin
illness. After years of apathy and neglect from government, MRC and the media it
is unlikely that all of the wrongs done to people with ME will be righted
overnight, unlikely that immediate redress is made for the bad strategies of the
Even the Gibson Inquiry itself was
hampered by lack of official funding and staff.
We are glad to hear that the Inquiry’s
task is to highlight the ongoing struggle of the CFS/ME community and to ensure
that the voice of the patient is heard. For far too long, and throughout too
many patients’ lives this has not been so.
The governments of the last twenty to
thirty years, and their appointed officials, have let down their citizens.
The Gibson inquiry report will, if taken
seriously by parliament, the government and the MRC, move the debate on ME on to
a level where patients can begin to receive correct treatment and the illness
can be prised away from those vested interests which have so discriminated and
violated people with ME.
Invest in ME believe that the results
from the Gibson Inquiry will help move us on and provide a solid opportunity for
improving all of the necessary points mentioned above.
IiME welcome the acknowledgement by the
Inquiry that, in Britain, there has been a clear historical bias towards
research into the psychosocial explanations of CFS/ME despite Parliament
recognising ME as a physical illness in a Private Members Bill as far back as
The Inquiry makes a very telling point
by clearly showing the current bias and ignorance toward ME shown by the medical
“At present, the British Medical
Association endorses Kumar and Clark’s ‘Clinical Medicine Fifth
Edition’ and ‘Clinical Medicine Sixth Edition’.
Yet it only discusses the
illness in the section on psychological medicine. In the fifth
Edition it does list Post Viral/CFS Under “Infectious Diseases”
however it immediately directs the reader to also see the
Psychiatric Section and suggests “two thirds of patients with a
symptom duration of more than six months may have an underlying
IiME agree with the Inquiry –
CFS/ME remains only in the Psychological section of medical
discourse, there can be little chance of progress”.
The term CFS/ME is stated to be the term
recognised in the UK. Most patient groups would choose ME or ME/CFS and this
correlates with the WHO.
IiME welcome the comments in the Inquiry
over the subterfuge surrounding nomenclature of ME with a commonly held belief
circulating that the World Health Organisation (WHO) categorises CFS/ME under
both neurology (i.e. disorders of the nervous system) and neurasthenia (mental
and behavioural disorders or other neurotic disorders (which the report notes is
reported in medical textbooks).
The Group found this assertion to be
IiME also welcome the acknowledgement
that the Chief Medical Officer’s Report 2002 had no mention of this
classification and neither are they in the current guidelines.
As the Inquiry report states CFS is
currently not present under any code in the ICD-10 on the WHO website current
Tabular version and the ICD-10 categorises Lethargy and Tiredness under section
R “Symptoms, signs and abnormal clinical and laboratory findings, not elsewhere
classified” specifically under R53 ‘Chronic Malaise and Fatigue’. The WHO
specifically excludes ME and PVS (G93.3) and fatigue syndrome (48.0) from this
It is relevant to constantly remind all that
the WHO in Geneva holds an internationally recognised classification
that ME is a neurological disease.
The report and press release clearly
highlight the inadequacies of NICE. The lack of epidemiological studies is
The Inquiry states that
has been thought that children could not suffer from CFS/ME but the
Group accepts that CFS/ME is prevalent amongst teenagers and
possibly in children. However it is very unlikely to occur in
infants and young children and so should not be confused with
Munchausen by proxy for example.”
IiME say that there are examples of ME
being diagnosed for children from the ages of 5-8. In any case if the Inquiry
states elsewhere that “CFS/ME is
difficult to categorise, to diagnose and often impossible to treat”
then how is it possible for it to categorically state that “it
is very unlikely to occur in infants”?
The report clearly states that the
association between ME and
has prompted a search for infective agents and there is now
reasonably convincing evidence that some infections do precipitate
research therefore needs to focus on efforts to categorise the
illness or illnesses and on possible infective or other
precipitating causes and into the factors contributing to a person’s
predisposition to the disease.”.
This is welcome comment and matches what
many ME groups and patients have been arguing for.
The statement in the report
there is not enough evidence to determine whether post-viral CFS/ME
is a separate illness from CFS/ME.”.
What is certain is that there is enough
evidence to show that ME is separate from any form of somatisation which
psychiatrists, backed by government funding, have been attempting to prove for
IiME welcome the recognition that
are indications that some people, particularly children, who have a
diagnosis of CFS/ME were exposed to organophosphate (OP) pesticides
before they became ill.”
As the report states
is essential that a comprehensive history of possible occupational
and recreational exposures to these toxic chemicals is taken in
order to exclude OP poisoning as a diagnosis. Again research should
be designed to test any hypothesis.”
It is interesting to compare this
statement with the lack of substance on this subject in the NICE guidelines.
The Inquiry suggests that –
present the only treatments are symptomatic and psychosocial. For
the extremely affected sufferer this is not satisfactory. Nor is the
current state of affairs satisfactory to this Group.
We suggest that it is not only
unsatisfactory to the severely affected – this current state of affairs has
implications for all people with ME.
We agree with the Inquiry that the NICE
guidelines recommend treatments based only on their selection of randomised
control trials and ignore further research which might lead to alternative
Invest in ME contend the statement that
(Simon) Wessely is considered by many to be the leading expert on
Wessely is NOT seen as an
expert by biomedical researchers or by ME patients or ME patient groups and
neither by most ME charities.
He is seen as quite the reverse and most
in the ME community who have researched and lived with this illness doubt any of
the findings produced by Wessely or his associates.
Invest in ME do agree with the following
is great dispute over the findings and beliefs of Professor Simon
Wessely. Many patient groups believe Wessely and his colleagues are
responsible for maintaining the perception that ME is a psychosocial
Invest in ME feel the following comment
has no place in this report -
gave up the research side of his work possibly due to extreme
harassment he received from a very small fringe section of the ME
Wessely has not been the subject of
extreme harassment from a section of the ME community. It is up to individuals
to be responsible for their own acts and IiME feel that stating that sections of
the ME community have harassed Wessely to be a little economical with the facts.
If this is to be considered as part of the
report then the inquiry should also look into the threats made
against Professor Malcolm Hooper and also against other physicians
who have stated that ME is a biological illness. Invest in ME know
of some doctors working in the MRC who have had threats against them
simply because they believe in the organic origin of ME).
The murky world of ME needs to be
investigated for sure – and perhaps a starting point might well be with those
with vested interests intent on retaining the present status quo regarding
public funding of elements of the psychosocial model.
It would have been interesting if the Inquiry had
been able to analyse more which groups and individuals are
benefiting from having their work funded by the MRC and which
individuals receive funding from insurance companies or military
departments to continue their somatisation of ME.
A great deal of the controversy
surrounding ME relates to these issues and is maybe one of the main reasons that
progress on finding a cure for ME has been so deplorably slow.
The further statement that -
is conflicting evidence available regarding Wessely’s true opinions”
seems to go
against public statements by Wessely on his true beliefs regarding ME.
Certainly the ME community are in no
doubt where Wessely and his associates have their true beliefs and do not
consider his, or his colleagues, as pertinent to proper research, treatment and
future cure for ME.
IiME welcome the observation from the
Inquiry that -
NICE draft guideline makes little reference to the possibility of
viral investigation in ME patients.”
Likewise IiME welcome these comments -
Group recommends, firstly, that these studies and others like them
must be examined by an independent scientific advisory committee
such as the one proposed above. Secondly, many of the studies we
received were conducted on a very limited scale and their findings
need to be confirmed or refuted by large-scale investigation. Until
this happens, the field will remain confused.”
Under Existing Treatments the report
selected for trials of these treatments are likely to have been
selected using the Oxford Criteria”
The Inquiry report makes the same
mistake as the NICE guidelines in discussing CBT (section 4.3). The section
begins by stating
most effective psychological therapy, which has been shown as such
in controlled clinical trials, is Cognitive Behaviour Therapy (CBT).”.
It then changes this to be a treatment
treatment certainly has a role to play in treating CFS/ME”
IiME feel that it is this imprecision
that is part of the downfall of the NICE guidelines and it is to be regretted
that this false impression is again given in this report. However many times ME
patient groups and patients state this it always seems to be ignored. So IiME
state this again –
The ‘success’ of CBT for CFS/ME patients is based on use of
the flawed Oxford criteria (already derided as insufficient earlier
in the report). The Oxford criteria use as broad a range of fatigue
states (and patients) as possible, as mentioned in the report
itself. CBT is not successful for treating ME patients and results
from trials using as broad a range of fatigues states as possible
Perhaps this could be noted by all
We again take issue with the statement -
is most effective in those with less severe forms of CFS/ME and
appears to be much less effective in those with severe disease”
For the same reasons as stated above we
Similarly GET has never been used for
severely affected ME patients. It has found to be harmful for ME patients. IiME
welcome the recognition by the Inquiry that
Exercise Therapy (GET) is an area for particular concern”.
As IiME have written to NICE, so the
Inquiry also states
that the NICE guidelines are
recommending these treatments without caveats”
We would go further and demand that its
use is removed as a therapy/treatment for ME patients.
The Inquiry has received reports of a
risk of heart trouble in patients with CFS/ME which has serious implications for
IiME welcome the recommendation by the
the heart function is examined, especially in the severely affected,
before GET is recommended. “
with milder forms of CFS/ME are usually easier to treat and more
often relieved of their symptoms than those with severe disease.
Treatments which have been claimed to help such patients include
Cognitive Behaviour Therapy and pacing”.
Where is the
evidence for this other than from those with vested interests in promoting the
somatoform approach to ME and from research which has been wholly biased toward
the psychosocial model of ME using flawed diagnostic criteria?
If the Inquiry accepts that the Oxford
criteria should not be used then the results of trials using these criteria also
have to be rejected – for the discussion of myalgic encephalomyelitis.
Quite clear directives can be gleaned
from the Inquiry’s report and these are relevant for NICE to take on board -
CBT is not the standard treatment for cancer
or other organic illnesses.
CBT does not work on ME patients if correct
diagnostic criteria are used for patient selection for trials.
GET is harmful for patients suffering from
IiME regret that the inquiry has not
gotten off the fence on these issues.
However, IiME do agree with the Inquiry
statement that –
is clear however that no matter how successful or unsuccessful CBT
may be it is at best only a partial answer.”
the above treatments are prescribed, they should be regarded as
symptomatic treatments, not as cures”
of our evidence suggests that GET carries some risk and patients
should be advised of this. “
The Inquiry states that
seems probable that, as with most other diseases, there is likely to
be a physical element and a psychological element to the illness.”
IiME wonder whether this is said for
cancer, or diabetes or heart disease?
Of course a physical illness may cause
psychological consequences – but one follows the other, not vice-versa!
This, we feel, needs to be underlined as
it unnecessarily leaves open the debate on whether ME is a somatoform illness.
As the report clearly indicates the
obfuscation of true facts regarding ME by certain parties over the years has
caused the ME patients to be the casualties of this situation – often literally!
The Inquiry should note that many children/teenagers with ME remain positive and
optimistic – a strange attribute if the above statement were true.
is no scientific proof of benefit from the use of vitamin or other
We feel this is
incorrect and that research into EPA usage, for example, has been shown to be
beneficial and, if not a major treatment or success, needs to be given equal
billing to CBT (unproven) or GET (harmful).
IiME agree with the Inquiry regarding
Alternative and Complimentary therapies and feel they deserve as much attention
as psychiatric paradigms. We particularly agree with the Inquiry’s observation
availability of these therapies under the NHS would be another
advantage of the recognition of CFS/ME.”
as this would take a further (financial)
burden away from ill people.
In the same way we feel the use of some
supplements which are found to be useful in treating symptoms of ME should also
be available under the NHS.
IiME feel that the Inquiry should be
knowledgeable of the fact that patients are only referred to these (Treatment)
centres if no other illness is found. ME could be misdiagnosed due to lack of
knowledge by the examining physician and the presence of an ME centre may be of
IiME agree with the Inquiry that
is clearly a need for research into causation, the spectrum of the
illness over time, therapeutic interventions and models of care. It
is indeed surprising that, given the talent and interest that there
is, huge frustration remains in providing funding for research and
the different approaches to research. The NICE guidelines must
surely recognise the inadequacy of our knowledge in all these areas
and indeed we may inhibit discovery and make profound mistakes in
the absence of a national, all round research policy.
IiME agree with the statement that
“The existing treatment centres
would be ideal places to undertake or initiate large-scale
epidemiological research studies of the type the Group feel are
vital in this field. Providing they were conducted according to
an acceptable criteria””
But the ‘according
to acceptable criteria’ is a key phrase here and
diagnosis must be accurate.
As the report acknowledges
CFS/ME treatment centres set up by the NHS have been to his
(Wessely) model. “
As the Inquiry later states
patient groups oppose these treatments because, although they are
founded on the positive results of controlled clinical trials, they
are psychologically based.”
If the centres are allowed to continue
to be based on the Wessely model then there will be no progress with ME. To be
worth anything these centres must adopt the most “stringent (NICE’s own word)”
criteria – i.e. the Canadian criteria.
MRC & Strategy & Research
Although the remit for the Group was
limited to the state of ME since the 2002 CMO report IiME feel it would have
been worthwhile noting that there is evidence to support the notion that
epidemics of ME have occurred and can occur and that this may also be an area
which needs further research.
The Inquiry states clearly what the ME
community have been saying for years - that the Medical Research Council (MRC)
is not serving the patient or holding out any hope of providing effective
treatments or cure for ME with its current policies. The Inquiry states that the
MRC has invested over £11 million in research into ME/CFS but these have focused
on the psychosocial aspects of the disease and in particular on controlled
trials of treatments of this aspect of the illness – and no major biomedical
research projects funded by the MRC have been brought to our notice
IiME agree with the Inquiry that the
Government should fund more research into potential causes, which might lead to
better diagnostic tests, and invite applications. Investigating potential
subgroups must be a strong priority.
We wholeheartedly agree that
of resources for biomedical research is urgently needed. The
committee would like to see a similar arrangement to the AIDS
programme funded previously by the MRC. “
It is interesting that the government
health minister is quoted as stating that few good biomedical research proposals
have been submitted to the MRC. We feel this shows the lack of knowledge, indeed
apathy, from the DoH and also shows the one-tracked, myopic approach shown
toward ME by the MRC.
|Is this the same minister
who routinely returns template letters to pwme or their carers when
they send in letters to the DoH asking for more research funding,
for a change in direction and when they explain what suffering is
being caused by this illness?
the same minister who has out of hand rejected an invitation to come
to the May 2007 ME/CFS Conference organised by Invest in ME?
We entirely agree that –
MRC should do more to encourage applications for funding into
biomedical models of ME”
The inquiry shows clearly the current
bias of the MRC to the psychosocial model by the evidence showing funding for
in the psychiatric/psychosocial domain”.
IiME completely endorse the criticism of
the MRC by the Inquiry. As the Inquiry has stated the MRC has paid lip service
to advance the understanding of CFS/ME and yet has itself confirmed
that from April 2003 to date, it has turned down 10 biomedical
applications relating to ME/CFS because they considered they were
not of high enough scientific standards to compete against the many
calls on its funds.”
“By contrast, since April 2003
the MRC has funded five applications relating to CFS/ME, mostly in
the psychiatric/psychosocial domain”
As with IiME and other patient groups
group were concerned by the MRC CFS/ME Research Advisory Group paper”
which concentrates research effort on case management and “potential
interventions” rather than “cause,
pathogenesis or means of confirming the diagnosis saying this
approach is as appropriate for CFS/ME “as it is in other illnesses”
of unknown cause”.
IiME have stated before that the MRC is
looking in the wrong direction. What has not been known for sure was whether
this was a deliberate policy of obfuscation.
The Inquiry gives the benefit of doubt
to the MRC – something which many ME groups may find a generous conclusion.
Whichever way one views this what is
clear is that the Inquiry now forces the MRC to provide proper funding and
recognition for biomedical research. A change of direction is necessary and the
MRC are now shamed into taking action – far too late – whereas they could have
listened to patients and researchers.
IiME fully agree with the following
statements, which are worth repeating in their entirety -
Group is concerned that this diverted attention away from the need
for more research into causation and diagnosis. The Group feels that
ME/CFS cannot be viewed in the same light as other illnesses of
unknown cause such as the malignant diseases which can be diagnosed
with appropriate existing investigations. The crucial issue with
CFS/ME is to identify diagnostic tests for it even before its cause
is clarified. Of course you can research the effects of treatment of
a proven specific cancer without knowing its cause. The same does
not apply to an illness where the diagnosis has not been positively
IiME would have liked the Inquiry to
make one other recommendation –
the MRC’s peer reviewing function be overhauled.
If so much biomedical research is being
rejected for a neurological illness, yet funding is given for psychiatric
research for the same illness, then the MRC peer review system is not working.
Maybe this can be
accomplished by a complete review of the way the MRC is managed and
operates and we would welcome that too.
Invest in ME have already
comprehensively responded to the NICE draft guidelines on CFS/ME (see
In the absence of known causes or cures patients require
considerable care, compassion, understanding and support and, in
particular, acceptance that they have a genuine and serious illness.
Dismissal of symptoms is unhelpful and only encourages strong and
counterproductive antagonisms between some patients and some
doctors. The NICE (National Institute for Health and Clinical
Excellence) guidelines indicate they are starting to introduce a
more patient centred approach.”
Unfortunately NICE state this whilst
attempting to enforce these same psychiatric paradigms onto the ME community
with their draft guidelines. We hope NICE read this report intently and follow
the obvious conclusions and the recommendations.
The Inquiry effectively admits that the
Oxford criteria are flawed for serious diagnosis of ME –
to the general nature of this guideline it is possible that patients
with a spectrum of fatigue symptoms whom are unlikely to have
authentic CFS/ME will be included in research”.
This means that any research based on
these criteria (which includes most of the psychiatric research) is suspect and
of little use in discussion of ME.
The report recommends that -
reporting studies it should be clearly stated which of these two
syndromes is being studied”
Just to reinforce this point it is worth
displaying the Inquiry’s further remarks on the Oxford criteria –
Group found that the international criteria paid far greater
attention to the symptoms of CFS/ME while the Oxford Criteria focus
very little on any symptoms other than long term tiredness. There is
concern that the broad spectrum of patients who may be included in
these criteria may lead to inaccurate results in patient studies of
CFS/ME. The Group feels that there is room for a further review of
the criteria which should be updated, in light of the peer reviewed
and evidence based research done both internationally and in the UK
in the past 15 years.”
spells the end of the Oxford criteria
– and all research associated with it – one of the points noted by
IiME in our response to the NICE guidelines.
This also means that the ongoing PACE trials now ought to be
halted and the money directed to biomedical research.
DWP & Social Services
The Inquiry states that
present ME/CFS is defined as a psychosocial illness by the
Department for Work and Pensions (DWP) and medical insurance
companies. Therefore claimants are not entitled to the higher level
of benefit payments. We recognise that if ME/CFS remains as one
illness and/or both remain defined as psychosocial then it would be
in the financial interest of both the DWP and the medical insurance
The Inquiry should have asked how this
can be so when the government itself accepts the WHO classification of ME as a
neurological illness of organic origin. These two do not match.
The DWP (supported (encouraged ?) by
insurance companies) are out of step with government statement on support for
IiME completely agrees with the Inquiry
when it recommends that -
“patients with CFS/ ME, which
is often an extremely long term condition, should be entitled to the
higher rate DLA. The sooner there is a biomedical model of
assessment for this illness the better.”
This is excellent news. Finally some
reality, and humanity, is being applied to this issue.
IiME feel that the Inquiry has exactly
identified one of the main issues –
medical opinion is better informed as to the nature of this illness
ME sufferers will have to live with the double burden of fighting
for their health and their benefits”
The Inquiry is to be congratulated for
bringing out this point which we and the ME community have been saying for a
The Inquiry has again hit the nail on
the head with regard to how the DWP formulate policy for ME –
are genuine problems in the benefit assessment procedures for ME/CFS
and as yet there is no agreement on new written guidance to replace
that which is currently in use. This consultation process, involving
meetings and redrafting, has been going on for over a year, but
government looks like adopting a new benefits policy which may still
leave it discriminating against claimants with ME/CFS.
IiME support the inquiry in changing
this. We also applaud the Inquiry for having the courage to come out and
directly name and shame vested interests who are subverting the future of proper
treatment of ME. The use of advisors by the DWP who have links to insurance
companies is a grotesque indictment of the current system in relation to people
“There have been numerous cases
where advisors to the DWP have also had consultancy roles in medical
insurance companies. Particularly the Company UNUM Provident. Given
the vested interest private medical insurance companies have in
ensuring CFS/ME remain classified as a psychosocial illness there is
blatant conflict of interest here. The Group find this to be an area
for serious concern and recommends a full investigation of this
possibility by the appropriate standards body. It may even be that
assessment by a medical ‘expert’ in a field of high controversy
requires a different methodology of benefit assessment”
IiME welcome the Inquiry’s statement
aspects have received less attention or support than they deserve
and that this shortcoming must be addressed”.
IiME support the Inquiry’s statement
origins and causes of the whole CFS/ME problem will only be found
through further scientific research.”
IiME also support the Inquiry’s call for
further Inquiry into the Scientific Evidence for CFS/ME by the
appropriately qualified professionals. This Inquiry should be
commissioned by government undertaken by an independent panel of
scientific and medical experts, including virologists,
immunologists, biochemists etc who can objectively assess the
relevance and importance of the international scientific data.”
This needs to be performed as soon as
This will potentially move the case of
people with ME forward into becoming a mainstream illness, and recognised as
such by health departments, social services and the media.
IiME agree wholeheartedly with the
group’s recommendation that, despite ME being defined as neurological illnesses
by the World Health Organisation, and various clinical and epidemiological
research studies in countries around the world having suggested that ME has a
biomedical cause, that
“The UK has not been a major
player in the global progress of biomedical research into CFS/ME.
Although some interesting biomedical research has been done in the
UK precedence has been given to psychological research and
definitions. The Group believes the UK should take this opportunity
to lead the way in encouraging biomedical research into potential
causes of CFS/ME.”
IiME believe the UK could well become
the leading light in researching a cure for ME provided the will is there and
the finances used in the correct areas.
IiME welcome the call for
epidemiological studies of large populations of patients to help
delineate subsets of patients.“
This will only help the proper treatment
of ME. More importantly this will help all patients get the correct treatment
for the illness from which they suffer.
The Inquiry states –
representative who appeared at the Oral Hearings proposed CFS/ME was
entirely psychosocial. So why has this model taken such a prominent
role in the UK?”
IiME welcome this question from the
The answer is also gained by earlier
statements about vested interests – especially the links between the DWP and
IiME feel that, on balance, the Inquiry
have helped to lay the grounds to destroy the imbalance in perception, funding
and justice for patients with ME.
As the Inquiry states
is no compelling evidence it is a purely psychosocial”
the findings of the CMO’s Report some three years ago. There has
been no massive investment in funding of research into ME. Instead,
we have seen a review of treatment by NICE based on existing
evidence and existing symptomatic techniques.“
Another question we should also ask is why is the CMO so
quiet? He has refused to come to speak or listen at the Invest in ME/CFS
Conference in May 2007. He has refused to allow a group of ME
support groups to visit him to discuss making ME a
notifiable illness in schools. One can only conclude that Sir Liam Donaldson
has no interest in ME or has other reasons for not commenting. We wonder whether
this report might provoke some response for the CMO.
We entirely agree with the Inquiry that
we must research to find alternatives to the current and past failures to treat
IiME feel that the Inquiry has made a
very bold and important recommendation by calling for an approach to this
illness as important as that given to heart disease or cancer.
We look forward to the Inquiry’s
recommendations being taken on by the government, MRC, DWP, CMO, PCTs and
universities to allow people with ME to hold out some hope that they may see
some justice and proper treatment within their lifetime.