In his second consecutive ‘Medicine Balls' column in Private Eye, Dr Phil Hammond returns to a subject in which he has a close professional interest – the medical care of people and in particular young people with ME/CFS. Click HERE to see what he wrote in the Eye last week.
The Eye received many supportive letters for stating in the last issue that CFS/ME (chronic fatigue syndrome/myalgic encephalopathy) has biological causes, but also some criticisms.
As one doctor put it: “Every illness has a physical, psychological and social component, and limiting diagnosis or treatment to only one aspect of someone's illness is likely to lead to a much poorer outcome. This ‘triple diagnosis' applies to any disorder you care to consider, although obviously in varying proportions. The one exception seems to be CFS/ME where any suggestion that there might be a psychological or social component leads to criticism. That cognitive behavioural therapy (CBT) is the only treatment which has repeatedly been shown to have any benefit is conveniently ignored.”
ME campaigners don't ignore the fact that CBT and graded exercise therapy (GET) have been shown to work in randomised controlled trials and are endorsed by lofty scientific institutions such as the Cochrane Collaboration and NICE, but they do challenge the science.
The PACE trial, set up to compare the effectiveness of the four treatments for CFS/ME, has caused particular controversy and activists have had to fight to gain access to sue of the data which they are re-analysing to determine if claims about the efficacy of GET and CBT have been over-sdtated. For the PACE researchers to accept any such re-analysis would require it to be published as a credible peer-reviewed journal with independent analysis that is free from bias. It is a long and complex process.
M.D. agrees that the split between mind and body is unhelpful, and there are indeed physical, psychological and octal elements in all illnesses, either as causes or consequences. But it was doctors who initially dismissed a physical basis for CFS/ME, and as a consequence insufficient attention and resources have been given to doing large scale biological nutritional and genetic studies that might provide alternative treatments to the non-drug options currently on offer.
In M.D.'s experience, CBT can help treat distressing anxiety and depression, and it can help people live with any chronic disease whatever the causes. But we should investigate pharmacological and nutritional treatments too. There are a significant number of CFS/ME patients who aren't helped by current treatments.
Genetic studies may reveal that CFS/ME is in fact multiple different disorders requiring different approaches. And given the large number of people affected (250,000 in the UK), we need to do this research.
M.D. has now listened to around 600 NHS patients up to the age of 19 who have been referred because profound fatigue has led to a drastic reduction in their previous levels of activity, usually with significant school absence. Families are desperate for help. The consultations are up to 90 minutes long, with breaks, and can be very complex. Some patients have CFS/ME, some have chronic fatigue likely to be due to other causes, and many have a mixture of both. It is not usual to see young people who not only have very disabling fatigue, but also anxiety, depression, a history of self-harm or an eating disorder. They have have diabetes, autistic spectrum disorder or ADHD. They may be bullied, live in poverty, have chaotic lives or exam overload. Often they are socially isolated and not believed. Sometimes it isn't easy to figure out precise causes for the fatigue, even in 90 minutes.
There isn't yet a specific diagnostic test for CFS/ME so diagnosis is made on criteria which inevitably have an element of subjectivity. We try to take into account other potential causes of fatigue. All patients diagnosed with CFS/ME have profound post-exertional malaise that can completely wipe them for hours, days and even weeks. All have unrefreshing sleep. Most recall a time when they were very active and full of energy and a clear trigger to the symptoms, usually an infection. Most young patients who are able to engage in treatment recover in time.
Current NHS provision for help with CFS/ME is very patchy and many children and adults have no access to any treatment locally. Those most severely affected are often housebound, with cuts in funding for home visits delaying or preventing assessment. Carers often have to give up work. Complex physical, psychology and social issues abound in all chronic disease, but prejudice mustn't blind us from looking for genetic causes and drug and nutritional treatments, or trying and trialling the non-drug treatments we already have. Research data must be shared for others to fairly analyse and use. But ultimately individual patients decide what works for them, and what doesn't.
M.D.
Thank you Dr Phil, For the concessions you have made in this article to the ME patients who have fought for so long from their sick beds for Justice, hope and proper treatment (nearly three decades).
But I am not quite sure of the purpose of these articles, you see trust is in short supply when it comes to the psychosocial group and anyone connected with them. I am sure there is an ulterior motive at work here somewhere.
The words are very smooth but are they genuine. Crumbs of comfort are thrown our way but there is a subtle undertone of attempted persuasion and subversion. But again you see we have heard it all before many times. If you truly believe the ME point of view why are you still working for Esther Crawely someone who has done her utmost to subvert the truth about ME by indulging in the worst apology for science ever and through her unparalleled access to the media provided by the SMC. I can’t emphasis enough how profoundly to the detriment this affects the lives of ME patients including the children you purport to treat.
You say:
ME campaigners don’t ignore the fact that CBT and graded exercise therapy (GET) have been shown to work in randomised controlled trials and are endorsed by lofty scientific institutions such as the Cochrane Collaboration and NICE, but they do challenge the science.
You are right on this one we absolutely challenge the science! and I would just like to point out that we once held Cochran and NICE in high regard but not anymore. Cochran allowed the PACE investigators to do a supposedly independent review of their own work. While NICE was also high jacked by the PACE group who shut down all investigations treatments and science on ME other than their own psychosocial paradigm.
I noted the little warning shot across the bow that tells us what the next defence from the PACE investigators will be:
“For the PACE researchers to accept any such re-analysis would require it to be published as a credible peer-reviewed journal with independent analysis that is free from bias. It is a long and complex process.”
Highly ironic considering the absolute bias that has driven the psychosocial group all these decades as they fulfil insurance company and government policy on ME over real science.
I feel there is a manoeuvring in this article in the direction of the MEGA study which would mean more millions purportedly £5-£9 coming under the control of the psychosocial group. If this happens (and I don’t see any reason why it won’t as they are merely awarding it to themselves through connections to the Wellcome Trust and the MRC) we can look forward to many more decades of misinformation and lack of any real biomedical research. It will also create a fine excuse to ignore any science from outside the UK, for perhaps a decade, which is at the moment making massive strides in the understanding of ME.
There are plenty of examples of the paucity of science contained in Esher Crawley’s work and I have put a links here to two of David Tuller’s articles on FITNET
http://www.virology.ws/2016/11/21/trial-by-error-continued-the-new-fitnet-trial-for-kids/
http://www.virology.ws/2016/11/28/trial-by-error-continued-a-follow-up-post-on-fitnet-nhs/
I really hope I am wrong in what I have written but I don’t hold out much hope I enter the festive season with a heavy heart and a sinking feeling for what’s in store for us all in 2017
“M.D. agrees that the split between mind and body is unhelpful, and there are indeed physical, psychological and octal elements in all illnesses, either as causes or consequences.”
I think it is essential actually that the mind-body distinction is observed. Firstly, to conflate the two denies universal human experience. We all know people who are physically ill yet have excellent mental health. Mental factors are simply not causal factors in their ill health, so to say to them “Ah you know, there’s always a mental factor in every illness” is just not applicable. And the idea, for example, that you can beat cancer with positive thinking (“I’m going to fight this cancer!”) has been debunked.
Secondly, the assertion that mental illness is always a factor in physical illness is gratuitous because it’s unfalsiifiable. If a person’s illness doesn’t respond to CBT, and the CBT therapist says it’s because they have faulty expectations of CBT (this is part of the alleged ‘mental component’ to every illness), then both the effectiveness and non-effectiveness of CBT are taken as evidence that the person has a mental component to their illness. The statement that there is mental illness in every physical illness is not therefore a scientific statement because it cannot be falsified.
Something very disturbing is happening here. Consider:
(1) Mental illness may be a causal factor in physical illness
(2) Mental illness is always a causal factor in physical illness
What is the argument from (1) to (2)? It is not sufficient to cite the mind body link because that supports only (1). Belief (2) is a very frightening and irrational dogma that will destroy doctor-patient relationships if it continues unchecked.
Belief (2) entails that patients’ are always to one degree or another responsible for their illness, in the sense that if their mental state changes for the better then so will their physical state. Psychotherapy of all forms includes an appeal to the volition of its subjects – ultimately a person’s will is involved because a totally recalcitrant patient cannot be a subject at all. Therefore a patient can, ultimately, be blamed for a failure to improve physically. This is the key point: in mental illness blaming patients is possible, but in physical illness it is not.
So this introduces the ‘blame-game’ into doctor-patient relationships, sowing mistrust on both sides. And this is the result of, in effect, abolishing pure organic disease as a real category of human experience. No-one is allowed to be simply physically ill any longer. There must, it is asserted, be a mental causal factor in all physical disease.
Of course any person with good mental health, who is suddenly struck down by cancer, will find this grossly offensive, not to mention useless. And why wouldn’t they? The idea that mental illness is always part or all of the cause of physical illness is a terrifying and stupid dogma.
I think the reality is this that no one understands the workings or aetiology of either Chronic Fatigue Syndrome or Myalgic Encephalomyelitis, because no meaningful research has been done for over one hundred years, after the McEvedy and Beard findings over forty years ago which there weren’t any findings only the decades long Psychobabble that we have had to put up with now in late 2016, Unless of course you feel that a long lost mouse virus has infected us all and no one thought of discovering this before a well known research institute in America started proceedings so they could then sell expensive blood testing kits to gullible clients. The PACE trial was designed to reinforce a lie that the illnesses can be treated effectively, whilst the lingering suspicion among sufferers and sane medical experts that the illness may never be effectively treated, this is an illness that fails to show distinctively in blood tests, brain scans and physical examinations The sad thing is that what the human condition doesn’t understand it then mocks and makes fun of, this wouldn’t be so bad if it led to some sort of salvation or better recognition of its origin and status inside the human body. The reality is still now in the early 21st century, is what the human race doesn’t understand it turns into further parody and then invents a pseudo science to explain it all. In all the years I have now suffered with this condition over thirty odd years, I still get the same blank looks of my general practitioners and the same smart looking tablets in foil packaging, lovingly wrapped by a machine that has the same constant mind-set has the dodgy experts out there promising a more effective treatment whilst the only thing that is improving is their bank balances and their careers in the bargain.