These letters appear in ‘The Sunday Times' today in response to the five-page ‘Science under Siege' feature by Michael Hanlon that was published in the Sunday Times Magazine last week.
Time to turn tide on ME therapies
MY DAUGHTER was diagnosed in 1999 at the age of eight with myalgic
encephalomyelitis (ME) by the late Dr Alan Franklin, a paediatrician
specialising in children with this illness (‘Scientists under siege',
Magazine, last week).
Dr Franklin travelled the country supporting families threatened with removal of their severely ill ME children, most of whom were housebound – and many bedridden and tube-fed such as my daughter – with symptoms that included, among others, paralysis, nerve and muscle pain, nausea and loss of speech.
These children were suffering from what the World Health Organisation
classifies as a severe and chronic neurological – not mental – illness. Sadly, families with such children are still being pressured today to make them undergo inappropriate and invasive treatments precisely because the prevailing view is that the chronic element of ME is psychological. Too many of my daughter's friends remain bedridden with horrendous symptoms because of the misguided use of “therapies”.
Kathleen Goodchild, St Albans, Hertfordshire
Positive action
Far from “skewing a whole branch of medicine”, responsible activism in ME is directed at promoting and encouraging scientific research and its funding. Activism has been pivotal in improving research and treatment for many diseases, including Aids, multiple sclerosis, breast cancer and malaria, with the government bringing up the rear.
Jean Harrison, Salem, Massachusetts, USA
Help, not hinder
Unfortunately your article will reinforce the idea that ME/CFS (chronic fatigue syndrome) is a mental health disorder and can therefore be dismissed. I am the sister of a severely disabled sufferer for 26 years, and we are desperate for the cause, whether psychological or not, to be found and for an effective treatment.
This can only happen with far greater funding for research into this
devastating condition. The misguided actions of a small minority will only hinder this and thereby prolong the agony of sufferers.
Debbie Gilbert, Watford, Hertfordshire
Cause for collaboration
The UK's leading ME/CFS charities deplore the harassment or abuse of
researchers undertaken by a tiny but vocal minority of people. Many
sufferers are living without treatment or support, or even a proper
diagnosis – this should be the real headline news.
We wish to support researchers to help us better understand the causes and to improve treatments. The future for many thousands of patients will depend on constructive collaboration between patients, charities, funders and scientists.
Mary-Jane Willows, Association of Young People with ME (AYME), Action forME, Chronic Fatigue Syndrome Research Foundation, ME Association, ME Research UK
Joining forces
Thankfully these days there are a good number of specialist NHS services for those affected across the UK by CFS/ME. These services deal with 9,000 new referrals a year in England and since being established in 2004 have seen 70,000 cases.
We are much encouraged by collaborative research led by experts in the field and supported by the Medical Research Council and national charities that is looking at ways to improve and expand research into this life-changing illness, which affects about 1-2% of the adults and teenagers in Britain.
Michelle Selby, British Association for CFS/ME, Dr Alastair Miller, Consultant Physician in Infectious Disease, Liverpool CFS service
Therapist support
There is another understanding of ME that sees it as neither a result of a virus nor a mental illness. Therapies that find the roots of ME in primary, fundamental emotions see the physical condition as essentially a symptom of these.
These approaches (which are not cognitive behaviour therapy or otherwise psychotherapeutic) say that the key lies in recognising these fundamental emotions, their sources, and taking constructive actions based upon them, raising the consciousness of an individual and so empowering them.
Crucial to this, of course, is the therapeutic relationship between the therapist and the client, as my wife has discovered in her own practice.
Andrew Whiteley, Consett, Co. Durham
Research moves on
Legitimate requests for further information, missing data and clarifications(FoI or otherwise) should not be conflated with the reported ‘extremist' behaviour. Michael Hanlon's article did not appear to be particularly fresh or current. An article in The Times in 2011 featured most of the same protagonists, claims and counter-claims. Thankfully serious scientific research has moved on, as reported in The Times (April 23), ‘Scientists have
found compelling new evidence for an underlying biological cause'.
Duncan & Lesley Cox, Rugby, Warwickshire
Majority report
What a pity that you devote an entire article on ME to publicity for the 50-80 activists engaged in an abhorrent hate campaign and ignore the 550,000 ME sufferers, who wait patiently for some effective treatment for this dreadful disease. I have had ME for 21 years after catching a virus on holiday and it has robbed me of any kind of normal life.
All I, and most sufferers, want is some effective treatment which at present does not exist (I have tried them all!). We do not care what our illness is; we just want someone to find out the cause and hopefully a cure.
Two weeks ago, a report in The Times, ‘Biological breakthrough offers fresh hope for ME sufferers', featured the work of the dean for clinical medicine at Newcastle university, who has discovered “very real abnormalities” in the cells of ME sufferers – proof that it is not “all in the mind”. It’s a pity that you did not focus on the newer more hopeful biomedical research such as this.
Rosey Lowry, Saxmundham, Suffolk
Activists miss the target
My wife was diagnosed with a severe case of CFS some months ago. As there is no medical cure as yet, we had to tackle the disease head on if she were going to have a life of some normality. We gleaned all we could from the book by Jacob Teitelbaum and are making good but slow process towards recovery.
The emotional and mental fatigue is as debilitating as the physical side, and we both wonder just how the “activists” are able to spend so much time and energy in their vitriolic and pathetic pursuits. Sufferers from ME/CFS require much patience, long term care and understanding; a cure is much needed from wherever it may emerge. Those researching the illnesses ae to be applauded.
Jeremy Rugge-Price, Orford, Suffolk
The Sunday Times doesn’t usually print such a large number of letters on one subject – all of which are basically critical of the way it was covered. I don’t think they are going to admit it but I suspect that on this occasion they are acknowledging that this feature had some major defects.
So well done to all the people with ME/CFS, carers, parents etc who wrote in with a variety of very relevant points. On this occasion it was well worth the effort.
As with all the other letters, the joint charity response was also edited down.
Thought the joint charity reply was excellent, esp the line:
“Many sufferers are living without treatment or support, or even a proper diagnosis – this should be the real headline news.”
thank you
I disagree. Repeating claims of what would be criminal behaviour if the police had any interest is nothing to do with ME or people with ME. There is no place in ME advocacy for such claims.
The Sunday Times have continued their pattern. First they promote unpublished research, then they run claims about harassment and threats which they fail to support with other evidence, and then they run these letters, some which support the Wessely school ideology.
AYME and BACME support the SMILE Lightning process study and the current fatigue clinics. Despite a recent review by Crawley and White which concluded that the fatigue clinics provide no clinical significant benefit to patients under the CFS banner.
What is wrong with The Sunday Times?
RE Andrew Whitley:
I personally wish all those who have benefitted from any talking or behavioural therapy the best of luck and am open to many ideas associating physical health with emotional and mental welfare/state. To see the roots of ME in emotions may benefit some patients, who will further benefit from therapy in the context of a good therapeutic relationship. But is this emotional paradigm any more true of all ME diagnosees than the CBT/GET/FIB one? Or indeed any other monolithic “explanation”? It is one thing to find the roots of ME in the emotional life of one or a group of sufferers. Quite another to suggest such insight is valid for all and the danger of exploitation of the vulnerable requires that the likes of AW make clear just how far they take their claims.
Andrew Whitley’s comments and the proclaimed insight of his therapeutic approach to ME may very easily lead to the “if it does not work blame the process/relationship and frequently the non co-operative patient” attitude which for years has been part of the CBT/GET advocates’ excuse for the dismal failure rate of that therapy. Sometimes it is not the therapeutic relationship that is at fault but the misconceived therapy – or rather the application of an inappropriate therapy to a patient whose illness has been “seen” to be caused by XYZ, rather than having been diagnosed properly. This is bad in individual cases, but when it is claimed to be true of a whole, very probably heterogenous syndromatic population it is disastrous – not least for therapeutic relationships.
There are far more than 2 alternatives to AW’s positon on ME – viral or mental. Most sufferers believe that many factors may be involved in any individual and over the patient population. Further the term “mental” itself is problematic. While it may describe symptoms does not assert cause, which may in many cases of accepted mental illness be viral. The dichotomy mental/viral is a false one. Then there are the multitude of other primary multi-systemic non emotional conditions – hypothyroidism, b12 deficiency, Lyme;s etc. which very often have mental and physical symptoms and may easily masquerade as ME and/or psychiatric illness and if undiagnosed are emotionally very trying indeed. Does AW’s cohort of practitioners require differentials for such conditions?
The term ME is of course problematic. It may be used to mean strict neuroanatomical encephalomyelitis with myalgia, and if anybody has seen the roots of this in fundamental emotions, I would like to see their evidence across a large patient population. It is very generally used to mean CFS of unknown biophysical cause with clear physical symptoms and abnormalities different from primary depression. Has the view advocated by AW truly found the roots of such CFS/ME in the emotions as opposed to many different causes incl. the biophysical. If so I am astounded. In fact AW’s approach involves the conflation of the term ME with those cases where physical problems have indeed been found to be of emotional origin, implying either that other cases of ME should be renamed or that all ME patients are really emotionally sick and in denial/awkward etc., if the therapy is unsuccessful. The patient as problem rather than the therapy as inappropriate.
Crucial to any therapy, biophysical or psychotherapeutic or other, is that basic of ordinary medicine – research, correct investigation, correct diagnosis, correct treatment, which may for some patients be based on fundamental emotions and mind-body links. As things stand the paucity of research, the promiscuous and vague use of the term ME mean that much treatment is empirical. That is admittedly not all but much of what we have and I congratulate any practitioners who have had success in treatment of ME/CFS/FM diagnosees by whatever means incl, emotional techniques. But for any one empirical school to claim that they see the roots of ME as the term is currently used in fundamental emotions or any other single phenomenon in any but a certain subgroup is a delusion rather than an insight. If they want to assert and argue that theirs is the real ME, they may.
If emotional paradigm therapists want to prove that their subgroup should have the name ME, that is their time and money, but if they wish to imply that all current ME diagnosees incl the broad church of CFS diagnosees are fundamentlly homogenous and in need of emotional therapy, and that when such costly therapy fails it is down to the therapeutic relationship (read patient in denial), when furthermore in some cases patients report paying for sessions of certain emotional type therapies and then being given the “get out clause” that the therapy did not work because the cause was viral therefore not ME, there are the makings of severe scam. This is wrong and all the more a pity because the such therapies do work for some.
All that is required is that they make clear what they mean by ME and how they determine whether a given diagnosee has the ME they are talking about.
My personal opinion is that Whiteley saw an opportunity to advertise his (and his wife’s) treatment/therapy, which is probably private.
I’d bet too, that there were many more far better letters sent, that the few published could not criticise the “biopsychosocial model” party line, or even suggest that it could be wrong.
I too, would like to see some evidence of this “death-threat” stuff – it’s been making news “headlines” since 2009, but is just the same old, same old story.