Group on Scientific Research in to Myalgic Encephalomyelitis (ME)
Invest in ME's Response
This 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 -
|o||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 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.
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.
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.
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
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
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.
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
No representative who appeared at the Oral Hearings proposed CFS/ME was entirely psychosocial. So why has this model taken such a prominentrole 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 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 cardiomyopathy.
It is recommended that ME be recognised as one which requires an
approach as important as heart disease or cancer. There is no
It is recommended that ME be recognised as one which requires an approach as important as heart disease or cancer. There is no compellingevidence 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.
The realistic 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 past.
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 1988.
The Inquiry makes a very telling point by clearly showing the current bias and ignorance toward ME shown by the medical establishment.
“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 psychiatric disorder”.
IiME agree with the Inquiry –
|“While 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 incorrect
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 definition.
|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 mentioned.
The Inquiry states that
|“It 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
|“infections has prompted a search for infective agents and there is now reasonably convincing evidence that some infections do precipitate the illness”|
|“Future 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
|“However, 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 years.
IiME welcome the recognition that
|“There 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
|“It 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 –
|“At 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 therapies.
Invest in ME contend the statement that
|“Professor (Simon) Wessely is considered by many to be the leading expert on treating CFS/ME“|
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 statement -
|“There 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 illness.”|
Invest in ME feel the following comment has no place in this report -
|“Wessely gave up the research side of his work possibly due to extreme harassment he received from a very small fringe section of the ME community.”|
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 -
|“There 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 -
|“The NICE draft guideline makes little reference to the possibility of viral investigation in ME patients.”|
Likewise IiME welcome these comments -
|“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.”|
Under Existing Treatments the report states that
|“Patients 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
|“The 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
|“This 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 are flawed.|
Perhaps this could be noted by all concerned.
We again take issue with the statement -
|“CBT 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 disagree.
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
|“Graded Exercise Therapy (GET) is an area for particular concern”.|
As IiME have written to NICE, so the Inquiry also states
|“(the concern) 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 GET.
IiME welcome the recommendation by the group
|“that the heart function is examined, especially in the severely affected, before GET is recommended. “|
IiME disagree that –
|“Patients 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 -
IiME regret that the inquiry has not gotten off the fence on these issues.
However, IiME do agree with the Inquiry statement that –
“It is clear however that no matter how successful or unsuccessful CBT may be it is at best only a partial answer.”
“If the above treatments are prescribed, they should be regarded as symptomatic treatments, not as cures”
“Some of our evidence suggests that GET carries some risk and patients should be advised of this. “
The Inquiry states that
”It 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.
Section 4.7.2 states
|“There is no scientific proof of benefit from the use of vitamin or other dietary supplements”.|
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 that
|“Wider 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 little use.
IiME agree with the Inquiry that
|"…there 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
|“the CFS/ME treatment centres set up by the NHS have been to his (Wessely) model. “|
As the Inquiry later states
|“Many 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
|“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. “|
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?
Is this 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 –
|“The 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 research -
|“mostly 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 the
|“need 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 and patients
|“The 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 -
|“The 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 confirmed. “|
IiME would have liked the Inquiry to make one other recommendation –
that 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 here).
|“1.4.6 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 –
|“due 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 -
|“In 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 –
|“The 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.”|
This effectively 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
|“At 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 companies.”|
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 the WHO!
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 –
|“Until 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 long time.
The Inquiry has again hit the nail on the head with regard to how the DWP formulate policy for ME –
|“There 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 with ME.
|“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 that
|“physical aspects have received less attention or support than they deserve and that this shortcoming must be addressed”.|
IiME support the Inquiry’s statement that
|“The 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
|“a 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 possible.
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
|“Large-scale 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 –
|“No 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 Inquiry.
The answer is also gained by earlier statements about vested interests – especially the links between the DWP and insurance companies.
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
|“There is no compelling evidence it is a purely psychosocial”|
|“Despite 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 ME properly.
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.