The Royal College of Paediatrics and Child Health has reaffirmed its belief that ME/CFS is a biological illness and disowned a statement made to the recent mini-review of the NICE Guideline on ME/CFS that it is “a psychological illness with physical manifestations” with clinical experience suggesting that the incidence “appears to be falling in children and young people”.
In a letter sent to the Countess of Mar on 21 April, Cambridgeshire paediatrician Dr David Vickers – a member of the Royal College's ‘President's Advisory Group' – wrote:
“I have reviewed our submission to the NICE consultation and can confirm this comment was from one individual who assisted in our response. As such it does not represent RCPCH policy, and in retrospect should not have been included. The phrase ‘as a psychological illness with physical manifestations' was unhelpful.”
Lady Mar, who chairs the Forward ME Group of ME charities and patient support groups, gave permission for the letter to be released today after she had raised the issue with Care Services Minister Paul Burstow and Mary-Jane Willows, chief executive of the Association for Young People with ME, had raised it directly with the Royal College.
Full text of the letter from Dr Vickers to the Countess:
21 April 2011
Dear Lady Mar
The Chief Executive of AYME has forwarded us a copy of your letter of 5 April 2011 to Paul Burstow in which you express concern about the RCPCH response to NICE on their consultation on possible revisiom of guidelines on CFSME. In our response we stated that “Regarding the epidemiology of chronic fatigue syndrome: as a psychological illness with physical manifestations, clinical experience suggests that the incidence appears to be falling in children and young people.
As our President stated in his latter dated 25 February 2011, RCPCH views CFSME as a biological illness and continues to stand by its own guidelines issued in 2004. I have reviewed our submission to the NICE consultation and can confirm this comment was from one individual who assisted in our response. As such it does not represent RCPCH policy, and in retrospect should not have been included. The phrase “as a psychological illness with physical manifestations” was unhelpful.
My prime reason for writing is to reassure you RCPCH continues to view this condition as a biological illness, which benefits from expert multidisciplinary management.
I am aware that these comments have caused some concern, and hope that this letter reassures you that our position has not altered.
Yours sincerely
Dr David Vickers
The Royal College of Paediatrics and Child Health was one of a couple of dozen organisations who made brief representations when NICE (the National Institute for Health and Clinical Excellence) invited them to comment last November on whether there was a need for a a major review of their August 2007 Guideline on ME/CFS.
The comments were published in summary form by NICE and this document can be viewed HERE.
Excellent outcome 🙂
I wish these people would speak more plainly.
“The phrase “as a psychological illness with physical manifestations” was unhelpful.”
How was it unhelpful? Surely it is incorrect?
The affirmation that CFS/ME is a biological illness is surely sufficient and significant JT – and the previous comment was ‘unhelpful’ and not ‘incorrect’. If there was no contention then we wouldn’t all be in the mess in the first place would we?
Personally, I find this statement from the Royal College to be something worth smiling about. He didn’t have to respond in this way – others’ may not have – but he did and on behelf of a recognised body.
The falling prevalency of CFS/ME in children was not addressed – and I would like to have heard the evidence for that statement – but having, a reaffirmation that CFS/ME ‘continues to be viewed as a biological illness, which benefits from multidisciplinary management’, is good to hear.
Particularly, if you are a concerned parent I would imagine, who picks up on all the psychobabble arguments and conspiracy theories; and especially in light of PACE.
Next, I would ask the Countess to have a polite word with the British Nuclear Medicine Society and get them to properly investigate patients using all their whizz-bang scanning technology, and find me some evidence of damage. But, hey, that’s just a personal gripe.
There were other comments in the Review that I would like to see explained, but I would rather smile over the RCPCHs letter first and pause for breath – if that’s ok?
I think there might be more to this though. I’ve heard stories of parents with children who have the worst kind of M.E, i.e 5%ers being forced to send their children to CBT/GET or face disciplinary action.
There’s a lobby out there that view some of these measures as a ‘psychiatric abuse’ from the system.
So I wonder how angry patients should be. The Professor of Psychology at Hull University rightly pointed out that there was no evidence of somatisation in patients with M.E. The burden of proof for such claims is lacking any sort of real evidence.
Yet in multiple studies when patients are heuristically tested (which of course, the NHS couldn’t afford, but it has to appear to be helping people), a combination of things is often found to be wrong with them (viruses, blood disorders, pots etc).
The somatisation lobby has a sexed up WMD dossier telling the story of young people under selective diagnosis improving to the point of having the health of a slightly less elderly person.
If statements like this ‘unhelpful’ one by the RCPCH have contributed to the abuse of children – then this admission is water pill to the families forced to suffer.
“the previous comment was ‘unhelpful’ and not ‘incorrect’. If there was no contention then we wouldn’t all be in the mess in the first place would we?”
Just because there is manufactured contention does not mean that the statement isn’t incorrect. It most certainly is incorrect. They need to get a spine and speak the truth. Though I will say it is good news they say they ‘believe’ it is biological.
It’s the same old games from these organisations. They twist every word they can to leave room for the meaning they convey to each other and the Government. Then they cannot be accused of duplicity and ignorance. The prime example is when they say the disease is “real”. That has no scientific validity. Everything is real. The evidence supports that the disease is organic in both trigger and perpetuation, not psychosomatic. That any secondary psychosomatic symptom, if present, is not the primary disease, as with any other organic disease.
Why would an incorrect statement on what is known about the disease be merely unhelpful. It is further propaganda that influenced the NICE guidelines consultation, and I would suggest it may be a significant enough reason for the Guideline development group (GDG) to revisit their decision to not review the Guidelines. However, regardless of this misleading statement from one individual that the RCPCH tasked with assisting in their submission to the GDG, the failed PACE trial and the association of HGRV’s with ME should have force this issue. Furthermore, will the RCPCH now ensure that such an individual is removed from involvement with anything to do with ME?
All organisations that claim to represent ME patients should now be publicly condemning NICE for their Guidelines. They should not give way until that document is removed from causing further harm. A new GDG should also be organised that is capable of understanding the existing biomedical literature on the disease, including retroviruses. It is unacceptable that they claimed such a virus to be “outside the remit of the original guideline.” If they are incapable, of which I have no doubt that they are, they should removed from interfering in the creation of suitable Guidelines.
I would have thought the expression “psychological illness with physical manifestations” was not so much wrong as totally meaningless. What exactly is a psychological illness anyway? Does it exist, or is simply an invention to pad the totally unacademic psychology courses at institutions of allegedly higher learning?
That’s one correction. Still leaves an incorrect decision (not to review) by NICE. What will it take?