‘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.
Patricia Dryden
Bewdley, Worcs
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.
Tom Kindlon
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.
Veronica Jones
Coleford, Glos
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
London W6
Just to point out that they edited my letter slightly. I said: “Grants have basically only been given to researchers who feel the condition can be effectively treated using specific non-pharmacological approaches.” by which I meant GET and CBT and related rehab therapies and effectively was meant to represent that this was sufficient or close to it. It is slightly different from what they published “Grants have only been given to researchers who feel the condition can be treated using non-pharmacological approaches.”
Some good letters, but I have to again point out the need to substantiate any claims of harassment.
The final letter also argues that things have changed at the MRC. 1.5 million that has not been allocated as yet, may never be spent in the next few years, and has only been targeted at several symptoms, is one problem. The comments in Nature Reviews last month from the head of the MRC CFS/ME expert group, which is again breaking with the WHO classification, prove nothing has changed. Holgate claimed that no definition has proven it is accurate and has precision, and that there are multiple causes. Yes, the UK health establishments created “CFS/ME” is not one disease, but ME is, and when you use a criteria of inclusion that describes a discreet disease, such as the CCC, it is accurate and does have precision. Is the MRC never going to bother applying science to this disease, or continue with political games and the fictitious invention of CFS/ME? Holgate also claims that social factors perpetuate the disease. There is not one piece of evidence that this is true. There are thousands of papers that show the biological process that will be responsible, but nothing to prove that upside down thinking. This is why CBT and GET have been repeatedly shown to be of no benefit.
We now have 4 variants of human gammaretrovirus associated with ME. When will the MRC get the virologists there to either replicate proven methodology or clinically validate their assays? They have done neither so far. The MRC results mean nothing without the application of the scientific method. Holgate can try and pretend that subsequent studies have argued differently, but scientifically they are missing any evidence. This is why blood studies in multiple countries are continuing and the numbers of lab saying they can detect the virus in people is also increasing.
Correct, JT, the £1.5 million may never be spent. I bet isn’t. Or it will be diverted to yet more psycho-twaddle.
Also, may I remind everyone that the MRC has allocated “up to” £1.5 million. How’s that for an inbuilt excuse for spending nothing?
It looks like more disingenuous ‘good intentions’. I’ll believe the MRC is serious about medical research when it approves some and pays for it.
While i don’t condone the nor understand the threats to researchers I do empathise with the frustration and isolation that CFS/ME sufferers feel
As a sufferer myself, I often feel that people do not understand me when I say I am “tired”, they say “yeah, me too”. There is not a word that convey how we truly feel. I often feel that my muscles have run a marathon and I have only got out of bed. I sometimes can’t even raise my arms to wash in the shower!
People who do not suffer this debilitating illness cannot understand and that makes us feel isolated. Perhaps this outrage is due to this frustration and lack of medical help. “oh dear, there is not cure, we don’t know how you got it, but suck it and learn to live with it!’
I have been living with it. I have been working with it. My issue is not the lack of medical research, that does take time and money and we are not a ‘sexy’ illness to make a career break through on. I would like more effort in trying to explain this illness to employers.
I have been back in work for 3 years and am STILL fighting my employers for “reasonable adjustments”. I am a teacher and work in a college of Further Education and their answer to me is ‘if you can’t do the job, leave!’
It took me 2 years arguing and then my Union rep pointing out they had stepped the wrong side of the Equalities Act!!
This year I have to go back into battle yet again. One of the problems is that I look normal, I don’t have a plaster cast or wheel chair to indicate I have a disability. The most sympathetic group I have met are my students!
I would like more information about what employers could do to help those of use who want to get back to normal, live a normal life as much as we can. I can work, but the cost is, I am wiped out at the week ends and evenings and its a known fact that teachers have to do work at home!!! Why? My employers don’t/won’t undestand my need for support. We need more information helping employers to support us not only going back to work, but being able to stay in work!
The £1.5 million isn’t much given the years patients have waited for biomedical research. The funds could go to the physical side but this might be on sleep or to prove the deconditioning theory using patients selected using the Fukuda criteria. In fact, if a criteria other than the older ME criterias or the CCC or even better, the ICC are used to find immune system abnormalities or do post-mortem research on the CNS, then people wouldn’t be so angry and we’d get closer to finding biomarkers for this disease.
If you have not yet signed the three important petitions currently in existence calling on the MRC to commit all of the promised £1.5m to biomedical rather than psychological research, please consider doing so:
http://bit.ly/Research4ME – original petition with over 1,000 signatures to be presented to the MRC before it makes its funding decisions in November (proposals were submitted in June)
http://epetitions.direct.gov.uk/petitions/491 – new petition on the Government’s ePetitions site. The site has had some teething trouble due to over-subscription, so please be patient and keep trying.
http://bit.ly/38DegreesCall4Research – submitted as a ‘campaign idea’ to 38Degrees. If it achieves sufficient support 38Degrees will consider taking it up as a cause.