Not all in the mind - Health Division to reconsider its position on Chronic Fatigue Syndrome
The case for listing Myalgic Encephalomyelitis (ME) on the register of free national health services may be reopened in future, after research has shed new light on a little-known and controversial condition.
The Health Ministry has confirmed with MaltaToday that a review is currently in progress.
With regard to ME being recognised for the purposes of disability benefit, please note that the issue is currently pending evaluation and discussion as part of the social security review process, an official said this week.
But so far there is no indication of what governments new position (if any) will be. Nor are there any corresponding plans to screen local blood donations for a rare virus that has been linked to the condition, with local authorities claiming that more studies need to be conducted before any decision can be taken.
All the same, for local sufferers who complain of discrimination by local health authorities, this admittedly vague indication may represent a distant light at the end of a very long and dark tunnel.
We look forward to the outcome of the social security review process, with a view to the recognition of ME for disability benefits, a spokesperson for Malta ME Sufferers said in response to this statement. More importantly, we would like to see an educational outreach programme, alerting GPs to this condition and its management. ME patients have been neglected for far too long and the introduction of a monthly multi-disciplinary out-patients clinic at Mater Dei hospital, dedicated to this condition, would go a long way to relieve some of their suffering.
Also known as Chronic Fatigue Syndrome or CFS, ME is a condition characterised by severe and debilitating fatigue, painful muscles and joints, chaotic sleep patterns, gastric disturbances, poor memory and difficulties in concentrating, among other diverse symptoms.
It can affect people of all ages, and there are an estimated 17 million sufferers throughout the world many of them children.
Notoriously difficult to diagnose, ME was for years passed off as a psychological condition, and is still often dismissed as hypochondria by a sceptical medical establishment.
But this view has recently been challenged by a study conducted in October 2009, which found that, out of 300 ME sufferers, nearly 98% were infected by a recently-discovered retro-virus called XMRV (closely related to HIV, but with unrelated effects).
These results, which appear to contradict conventional knowledge of the condition, were published in the journal Science late last year, and have been the subject of controversy ever since.
I think this establishes what had always been considered a psychiatric disease as an infectious disease, lead report author Dr Judy A. Mikovits, research director at the US-based Whittemore Peterson Institute, told the New York Times.
If true, the XMRV link may open new avenues for treatment of ME, for which there is currently no known cure. It would also radically alter the publics perception of this condition, with far-reaching implications for health services in countries (including Malta) where treatment for such conditions would usually be covered by the national health service.
Only in Malta?
So far, however, Malta does not recognise ME as a health condition at all notwithstanding that the same syndrome is clearly listed under neurological disorders by the World Health Organisation(code: WHO-ICD-10-G93.3).
This in turn means that sufferers are not eligible for free medication or disability benefits: a situation labelled discriminatory by the local association representing ME sufferers in Malta.
If the government has a commitment to help disabled people then that commitment should apply to all those who are disabled; social services should not be allowed to pick and choose whom they serve, Nicola Reiss, co-administrator of ME Sufferers Malta, told this newspaper in a recent interview. At present people with ME are discriminated against. Even those who are bed-bound receive no disability benefits and no social services. This is simply not right and it is certainly unchristian.
Lack of social services is but one of the difficulties faced by ME sufferers another is the apparent dearth of information about the condition itself, for which no standard therapy appears to exist, in Malta or anywhere else.
Under the current scenario, diagnosis is possible only by a process of elimination which can take more than six months. So far, the only available treatment is restricted to symptomatic relief only; and even this limited therapy appears to vary in results from individual to individual.
From this perspective, news that a potential cause may have been identified would radically alter the direction of international medical research, with far-reaching and possibly controversial consequences.
The XMRV link
Discovered in 2006, Xenotropic murine leukemia virus-related virus (XMRV) is a retro-virus closely related to HIV, and believed to be amenable to at least four drugs used successfully for its better-known cousin.
It has since been linked to both prostate cancer and also ME though in both cases there is no consensus among the international medical community.
Since the publication of the Mikovits report, some scientists have argued that the presence of the virus alone is not proof of a causal link.
In theory, people with the syndrome may have some other, underlying health problem that makes them prone to being infected by the virus, which could be just a bystander, the NYT reported.
Furthermore, a separate study conducted by the Centre for Disease Control (CDC) appeared to reach opposite conclusions though in response, the Whittemore Peterson Institute claimed that the two studies had used completely different methodologies, and therefore the results could not be compared.
In a rceent interview with CFS Central, Dr Myra McClure and Dr Kate Bishop, two of theBritish researchers involved in the CDC study, admitted that their studies were not replications of those conducted by the WPI.
However, this has not stopped the media in several countries from persisting in erroneously reporting that the CDC study disproved the findings of the team led by Dr Mikovits: a fact which has dented the impact of the WPI study.
Either way, some countries - including Canada, the UK and Australia - have taken to automatically screening blood donations for the XMRV retrovirus, as most countries already do in the case of HIV.
No screening in Malta
Maltas health authorities appear to share in the international scepticism regarding the XMRV-ME link, and to date no screening takes places for the suspect virus in Maltese blood donations (though to be fair, the detection of this virus is not exactly a straightforward matter).
The evidence linking XMRV to protactic cancer and Fibromyalgia (ME) is controversial, a Health Ministry spokesperson told MaltaToday. There is certainly no consensus on the issue; at the moment we are following research developments.
(Note: following enquiries, the Ministry acknowledged that Fibromyalgia is not the same as ME. What has been said by us in respect of Fibromyalgia applies to ME, a spokesman clarified.)
At a meeting of Competent Authorities on Blood Products, it was ascertained that there is insufficient data on the transmission of the virus through blood transfusion or the connection of the virus to any disease or syndrome. Accordingly, we do not perform any screening tests for the virus. In line with the precautionary principle, all blood donors are asked whether they are suffering from symptoms suggestive of (ME), and if they respond positively the donation is deferred and donors are referred for further investigation.