22nd February 2005

My Question to Professor Colin Blakemore on the

BBC Radio 5Live Simon Mayo Programme

 

This morning I was alerted to a forthcoming interview on Radio 5 Live's afternoon show hosted by Simon Mayo.

It was a surprise to learn that Professor Colin Blakemore, the CEO of the Medical Research Council was going to be interviewed.

I decided to submit a question and then after clicking on "Send" thought that there would not be a hope of it getting on air.

Later that afternoon I checked my e-mail to discover that my question had been broadcast and that Professor Blakemore had given a full reply.

If you would like to listen to that reply click here and select "Open" to listen to the .mp3 excerpt.

Sadly in his reply Professor Blakemore only confirmed the fears of many of us by comparing Myalgic Encephalomyelitis to Depression.

He used the ongoing mantra of not worrying if ME/CFS was either psychological or neurological and that if psychological interventions worked then we should all be thankful for this.

He did not admit that for people with ME, psychological interventions are either of little use or of harm to an already sick and disabled person's health. The same is the case for people with other equally disabling medical conditions such as Multiple Sclerosis and there is a significant overlap between the symptoms of MS and types of Arthritis including Behçet's Disease.

It is now crystal clear to those who hear this response that the CEO of the Medical Research Council is singing from the hymn sheet written for him by Professor Simon Wessely (who was once employed by the MRC) with the now often churned out claim that ME and CFS are a single unified entity that can be effectively treated and cured with Cognitive Behavioural Therapy and Graded Exercise Therapy just as clinical depression can be treated and resolved in the very same way.

For those of you reading this who would like to know more about all the underlying issues relating to Myalgic Encephalomyelitis and Chronic Fatigue Syndrome please click here to read What is ME? What is CFS? written by Professor Malcolm Hooper, Margaret Williams and E.P. Marshall.

The simple fact is that the current agenda of drowning is all in Cognitive Behavioural Therapy (CBT) and Graded Exercise Therapy (GET) will neither cure or rehabilitate people who are chronically ill with Myalgic Encephalomyelitis.

It has already been pointed out many many times in patient surveys carried out by ME charities including one by Action for ME and another by the 25% ME Group that people with ME who have already tried CBT and GET either have be harmed by such regimes or have found little or no use for such "treatments".

Until last year, many millions of pounds had already been spent on studies relating to CBT and GET on people with Chronic Fatigue Syndrome.

Such studies always had mixed outcomes because the patient groups utilised for such studies were (by virtue of the clinical inclusion criteria used) a heterogeneous group of patients.

Last year over £8million was given to the same psychiatrists who are now carrying out yet more of the same studies using the same clinical criteria which will thus produce yet more mixed research results and leave many thousands of people with ME bereft of a cure or any sort of functional recovery.

Many see the current agenda as a process by which career psychiatrists can earn moneys from MRC handouts - cornering the market in ME/CFS treatments so that they can in fact become the default clinical specialist for people with ME.

In effect, ME/CFS will become a psychiatric disorder; treated by default and exclusively in a psychiatric setting.

This is of course totally supported by the UK's biggest ME charities Action for ME, the ME Association and AYME.

This is how far we have come and in reality a condition of neurological origin is being totally misserved by this ongoing process.

The bottom line is.... when those with chronic tiredness have been cured by CBT and GET there will be a core group of very sick and disabled people with all the signs and symptoms of Myalgic Encephalomyelitis who will have gained NOTHING from the process forced through in the UK over the last 5 years.

The MRC are ignoring research from around the world detailing neurological, immunological, cardiological, endocrinoloigcal and other abnormalities and dysfunction's specific to people suffering from Myalgic Encephalomyelitis.

The MRC are ignoring UK research detailing abnormal blood and urine chemistry in people with Myalgic Encephalomyelitis.

Ongoing infections such as Human Herpes Virus 6 are being found in people with Myalgic Encephalomyelitis yet the need for testing for such infections is being ignored by the MRC.

Patients with ME are not being tested or examined for anything revealingly complicated.

People with ME are not having MRI head scans to look for brain abnormalities that are being found in people with ME who can afford to go private.

I shall be writing to Professor Blakemore to follow up his reply on Radio 5 Live and if he responds to my letter I shall post it here.

Yours sincerely,

Stephen Ralph DCR(R) Retired.


Transcript of my question to Professor Colin Blakemore

Simon Mayo : " Question for you here from Stephen Ralph on an email says I wondered if you could ask Professor Blakemoore why (after several years of promises) the Medical Research Council has so far failed to fund any biological research into the physiological issues surrounding M E and Chronic Fatigue Syndrome - conditions that are recognised by the World Health Organisation as being a disease of neurological origin. Thus far the Medical Research Council has been seen to do not a lot more than perpetuate the status quo of funding psychological interventions into what they call "CFS/ME" - says chronic fatigue syndrome slash ME. These interventions do not address neurological, cardiological, immunological and other abnormalities highlighted in international research that so far has been ignored in the United Kingdom. If you could ask this question I know that there will be hundreds of chronically sick and disabled ME sufferers out there who would like to know the answer"


Blakemore : "Well I`m glad to have the chance to respond to that, I know that this is a very current issue of very great concern to ME sufferers , it is by no means ignored by the Medical Research Council, we`re very very concerned about it, we set up a committee to work with the ME charities and with patient groups to try and work out a strategy a couple of years ago and we have put out a call for research grant applications in this area- we are funding trials on chronic fatigue syndrome and ME clinical trials of treatments--I think to concentrate on this question of whether ME is thought to be a neurological or a psychological condition actually isn`t going to get us far--I mean compare the situation with depression--depression is a brain condition we know quite a lot about what goes wrong chemically and physically in the brain of a depressed person --but depression can be treated both by psychological approaches and by drugs and they both actually work in rather similar ways on the brain--they change brain chemistry--so I don`t think we should look down our noses at psychological treatments if they work that would be that would be wonderful and if they did work it wouldn`t mean that it wasn`t a neurological condition we are open minded as to the basis--we accept that this is a real disease there`s no doubt about that people suffer terribly with this condition--we don`t understand it`s basis presumably it has to do with real faults in the nervous system in the brains of sufferers and work is needed in that area --but we need high quality proposals- the Medical Research Council can`t just invent good science and I think everyone would agree that they wouldn`t want tax payers money wasted on bad science however important the cause you see the problem - that getting right the balance between recognising the urgency of the need and yet funding only the research which is worthwhile is what we have to do--"

Mayo: " Stephen - thanks very much for the email..."