‘Chronic Fatigue syndrome needs more research’.
With competing theories for the illness, it is reasonable for the ME community to point out that the funded projects have lacked balance
Sir, Colin Blakemore says that it shouldn’t matter to chronic fatigue syndrome (CFS) sufferers which type of condition they have and thus they should not villify researchers who only concentrate on one aspect to the exclusion of the other. This exclusion is the crux of the matter (“Disease of the brain, not the mind, has no stigma”, Opinion, Aug 2).
Professor Blakemore’s concern is insufficient to explain to the medical world the desperation of sufferers and carers who are left to fend for themselves, with GPs shrugging their shoulders with comments such as “nothing can be done”. He admits there is no prospect of treatment.
The medical world should be ashamed. Professor Blakemore’s article points to the numbers of patients involved. He states one of the symptoms is of muscle pain. Whatever the medical source of that pain, it is extreme in some cases. Patients cry in agony, daily, hourly with no relief and, as he states, with no prospect of relief.
No other patients of an illness are expected to suffer such levels of pain. But for a CFS sufferer nothing — no help, no prospects, no hope.
Sir, Colin Blakemore does not accurately portray concerns about how the Medical Research Council (MRC) has allocated money for research into ME/CFS. Grants have only been given to researchers who feel the condition can be treated using non-pharmacological approaches.
Given the competing aetiological and pathophysiological theories for the illness, it is perfectly reasonable for the ME community to point out that the portfolio of funded projects has lacked balance.
Information Officer Irish ME/CFS Association
Sir, Professor Colin Blakemore’s description of the devastating impact of ME, its substantial cost to the NHS, its enormous impact on the economy and the staggering suffering of patients is sadly all too accurate. He concedes that the MRC has not spent enough on research into this condition.
Let’s hope the MRC’s latest initiative to set aside £1.5 million will attract new research talent that is intent on finding answers rather than continuing a mind/body debate, which does little to help patients.
Sir Peter Spencer
Chief Executive, Action for ME
Sir, Professor Blakemore says that [CFS] “almost certainly is not a single medical condition”, and yet over the years millions of pounds in government funds have been given to psychiatrists, but practically nothing to biomedical researchers.
It is hardly surprising, therefore, that sufferers are frustrated and clamouring for biomedical research into this devastating chronic illness. Highlighting the actions of a few extremists and implying prejudice against mental illness does grave disservice to the many thousands who simply want the balance to be redressed.
Sir, The assumption behind the MRC’s research is that people with ME are just avoiding activity. If it were true, we’d all be long dead.
As of February this year, things have changed at the MRC to a more scientific orientation, but as good scientific research can throw up serendipitous findings of importance elsewhere, one wonders how much has been lost in other fields — cancer, infection, immune functioning, and so on — as a consequence of such a weak assumption being allowed to dominate and eat up precious public resources for so long.
Douglas T. Fraser