This is the reply I put on the UTV Life Blogpage this afternoon on behalf of the NI MEA.
Ken Hull did not advocate CBT and GET as treatments for ME, during his UTV interview. Those who want the facts will find a transcript of the programme at http://nimea-ni.blogspot.com/.
NIMEA opposed psychiatric management of ME in its submission to the Belfast CMO in November, and were among the first of the UK ME charities to reject the main NICE recommendations, (see the NIMEA blog). But some of our critics aren’t really interested in facts.
Ulster ME charities who attack the BCH CFS clinic are hypocritical. All of them have members who attend that same clinic in large numbers. In fact, there is always a waiting list. NIMEA itself has members who are strongly opposed to the siting of the clinic within Windsor House, some who don’t mind, and some who fall between.
We are a mature organization; we respect diversity of opinion; and we responsibly reflect the full spectrum of views within our membership. The decision to attend, or not to attend the BCH clinic is one for the patient. NIMEA fully respect and defend the rights of individual patients to make their choices. There are other advocates who seem to want to impose their own preferences on the entire ME community.
We do receive complaints about the BCH clinic, but none about the Senior Occupational Therapist in charge of treatment. Many NIMEA patient members have warm praise for her. We have independent evidence that friendliness and mutual respect are the hallmarks of her relationship with her ME clients. She is the only NHS-funded specialist for ME in Northern Ireland. She is a valuable asset, and we need many more NHS staff like her. She has our full support.
Jo Calder,
Administrator,
NI MEA.
7 comments:
I would first of all like to thank UTV for trying to highlight the plight of ME sufferers in Northern Ireland and also Antoinette, Paul and especially David Christie for bravely appearing on the programme to clearly demonstrate the dire situation severely affected ME sufferers in Northern Ireland find themselves in.
As I have had ME for 20 years now, I am well aware of the politics involved with ME both internationally as well as locally. Having taken calls to a local ME helpline in the past, I am also only too well aware of the impossible black hole of a situation ME sufferers in Northern Ireland find themselves in, when trying to obtain appropriate medical help.
In contrast to the Christie family's contribution to the programme I felt that Ken Hull, Chairman of the Northern Ireland ME Association (NIMEA), was woeful and totally failed to clearly advocate for ME patients in Northern Ireland.
I can well understand other sufferers anger and frustration at Ken’s response to a question about Dr Derek Enlander, an Ulster born, internationally recognised ME specialist clinician, the like of which we are sorely crying out for here. I was also angry that all Ken could then come out with was that you could get graded exercise therapy and cognitive behaviour therapy on the NHS, which is just so totally irreverent to the likes of severe sufferers like David Christie, whose plight had just been shown. It was such a let down and totally failed to address the urgent need we have here for proper medical services for ME patients.
Ken then went on to promote the Belfast CFS Clinic, which offers the treatments of Graded Activity and CBT for ME patients, who are well enough to attend the clinic. As has been mentioned in other people’s comments these treatments are based on a psychiatric model of the illness and have been shown to be of little or no help in actually improving an ME patient’s condition and for many have resulted in a relapse or worsening of their condition. Unlike Ken I have yet to speak to anyone whose health actually improved as a result of attending the Belfast CFS Clinic and six years ago I did not renew my membership to the NIMEA, as I was so angry at their tacit support for the Belfast CFS Clinic.
Indeed the NIMEA's current position that they support the Occupational Therapist at the Belfast City hospital and apparently (from their latest statement issued a few days ago and maybe I am misreading it) now do not support the liaison psychiatrist who supervises the CFS Clinic at Windsor House (Mental Health Service) at the Belfast City Hospital in Belfast is at odds with the fact that it is simply impossible to divorce one from the other. The clinic's treatment model offered is based on a psychiatric model of the illness (propagated by a group of UK psychiatrists), which presupposes that the illness has no physical biological basis (which, apart from being wrong, has multiple consequences for the patient) and that sufferers just need to be rehabilitated. This flies in the face of current and historical biomedical research into ME, which has recently even shown ME to have a genetic signature. This research was by one of a number of researcher's working in the field, who are originally from Northern Ireland. ME is also recognised by the World Health Organisation as a neurological illness.
I have personally attended Northern Ireland ME Association conferences in the past where the liaison psychiatrist who runs the Belfast CFS Clinic has spoken and I have heard him clearly state his view that, while ME patients had physical symptoms, they did not have an underlying physical disease process (May 2001). He is further documented as saying "Since there is no disease to cure, the task usually is one of rehabilitation for the sufferer" - Radio Ulster interview (end of 2002) and "The aim is get them back to what they once were. The way to do that is, physically, with rehabilitation and in terms of their mental attitude. These people need to have their attitudes changed. If there is a fear that there is a underlying disease, that is a major barrier on the road to recovery." - Belfast Telegraph article - 5th April 2004
I have also been concerned that recent information from the NIMEA (2007 NIMEA conference flyer) stated that the liaison psychiatrist running the Belfast CFS Clinic was holding discussions with the NIMEA with regard to expanding the model of the Belfast CFS Clinic throughout Northern Ireland. Unbelievable?
Imagine if you will the situation where an MS charity gave a platform to a doctor who said that MS was not a real physical illness, the members would be up in arms, yet this happens in an ME charity here.
So the NIMEA has been for years giving a platform to a liaison psychiatrist who has repeatedly said he doesn’t believe ME to be a real physical illness (this is not a neutral position on the part of NIMEA, as they would like to have you believe) and in his clinic offers psychiatric treatment based on the premise that ME is not a physical illness, for the neurological illness ME (and it has appeared to local sufferers for many years, NIMEA have been supporting and collaborating with the Belfast CFS Clinic). This tacit support for the Belfast CFS Clinic by the NIMEA is actually hindering real progress being made in achieving a situation where local sufferers actually get the appropriate medical help they need. The local Department of Health when lobbied by local ME sufferers to provide proper medical services for ME patients has responded that there is already the Belfast CFS Clinic and further that “the NIMEA has developed strong links with the Belfast CFS Clinic”.
The recent statements by the NIMEA where they opposed psychiatric management of ME in there submission to the Belfast CMO in November 2007, reject the main NICE recommendations and call for biomedical research into ME are all welcome and commendable, but they are undermined by their insistence on not taking a clear and unequivocal stance with regard to the psychiatric Belfast CFS Clinic.
While the NIMEA jumps through hoops trying to find a form of words that will allay local sufferers concerns about their apparent support for those who do not believe ME to be a real illness and at the same time are involved with discussions with those same people to further expand the BCH CFS Clinics model for treatment throughout Northern Ireland, many local ME sufferers will not have any faith in them to represent them.
Senior officers in the charity NIMEA who have presided over the charity for this last decade and whose actions have enabled the status quo, should seriously ask themselves if they are the best people to represent ME sufferers in Northern Ireland, especially when doing media interviews.
Local ME sufferers I have spoken to also wonder just how much some officers of the NIMEA feel themselves constrained in what it is they can say and do in certain matters by the fact that the NIMEA's core funding is provided by the Northern Ireland Dept. of Health.
So what then is needed? For a start the Northern Ireland Department of Health must recognise that ME/CFS is a physical illness and as a consequence that it will be managed in mainstream Health Board planning for physical illnesses. ME is a complex physical illness, affecting multiple systems in a person's body and in Northern Ireland we need dedicated specialist ME clinicians and nurses (with backup from other medical disciplines), who believe it is a real physical illness and who are keenly following and indeed collaborating with the international research effort going on into the causes and treatment of ME. And these medical services must be accessible to all ME sufferers, including the severely affected sufferers like David Christie.
Can I just end by saying that it is also extremely disingenuous for the Northern Ireland ME Association to have a dig at other ME organisations in Northern Ireland regarding the use of the term CFS (when they full well know that the reality of the situation we find ourselves in is that doctors are giving ME patients a diagnosis of CFS), especially so when they, as it has appeared to local sufferers for many years, have been the only local ME group supporting the Belfast CFS Clinic, which promotes a psychiatric model and treatment of ME/CFS.
Ian McIlroy
Belfast
Ian
May I offer you few words of advice - I suggest you get ALL your facts correct before posting in the public domain.
As for the NI MEA being "disingenuous"......well now, that is just a a tad hypocritical to say the least. The NI MEA is very well aware that a lot of medics refer to ME as CFS - that does not mean that we have to adopt it as part of OUR name. We have never used the term CFS in relation to our Association and never will. Neither do we adopt an "umbrella" approach to the illness. We are proud to resist using CFS - the watered down name for ME.
Perhaps if you had been so "vocal" and "active" during your time with the NI MEA you too could have been on Committee, and given the Association the great benefits of your wealth of knowledge into all things medical in general, and ME in particular.
NIMEA certainly does endorse CBT/GET and here it is in from Ken Hull, in black and white from the UTV transcript.
"...(In the NHS) patients are taught graded exercises, which
helps some people but doesn't help everyone; and there is cognitive therapy."
So he did not object to CBT/GET, made no warnings about dangers, omitted pacing altogether (despite NIMEA claiming it's the only management they advocate) and indeed baldly stated, as above, that GET "helps some people". As far as most people are concerned that's an endorsement, and it's also a promotion.
Good luck on convincing them you're not "some people".
Mr Hull was also disparaging of biomedical treatments carried out by international ME experts such as Dr Enlander. We can only hope that Mr Hull is able to maintain such a state of health as to not be in dire need of them, unlike many sufferers who are crying out for such medical care.
If that's not proof enough, we know at least some of its staff support the NICE guidelines even if NIMEA as a whole objected to them:
"NICE had its own definition of CBT, much of it good old-fashioned common sense, and none of it about "dictation of illness beliefs". The NICE brand of GET is not an imposed rigid schedule; it had built-in rest periods; and it comes with explicit warnings of adverse
effects. NICE asserted that in ME as in other conditions, the patient's rights to consent and choice of treatment were paramount, and non-negotiable. NICE takes the view that manifold psychiatric hypotheses - remain hypothetical."
Sounds pretty glowing. That's a presentation from Horace Reid at the 2007 NI ME conference.
Still not convinced?
Okay, lets look at what the Belfast City hospital actually does.
"Dr Noel Scott and Jane Perkes, Occupational Therapist from the CFS Service in Belfast City Hospital, gave a presentation on the most recent treatment being offered
at the CFS clinic. This Service uses the principles of GRADE OF
ACTIVITY AND THE MOTIVATION BEHIND IT. THE EMPHASIS IN THIS SECTION WAS MANAGEMENT AND MOTIVATION."
This is from the 2006 Conference and Information Day on ME / CFS, NTL Studio, Belfast.
And what does NIMEA have to say about this?
"We do receive complaints about the BCH clinic, but none about the
Senior Occupational Therapist in charge of treatment." Many NIMEA
patient members have warm praise for her. We have independent
evidence that friendliness and mutual respect are the hallmarks of
her relationship with her ME clients. She is the only NHS-funded
specialist for ME in Northern Ireland. She is a valuable asset, and we need many more NHS staff like her. She has our full support.
Jo Calder,
Administrator,
NIMEA."
So to summarise, the BCH practises CBT/GET which the NIMEA aren't supposed to support, because they only advocate pacing. They receive complaints about the clinic, but not on the treatment, which makes the OT acting for the psychiatrist "valuable" and somehow an "ME specialist". Furthermore the OT gains trust of desperate sufferers through "friendliness" which is "evidence" of her, um, relationship , with patients.
In other words, NIMEA supports practitioners of CBT/GET and finds them "valuable" as long as they're friendly.
Mike
Mike
What part of “The NI MEA does not advocate CBT & GET” do you not understand? Of course, it suits you to once again use your twisted logic to your own ends. Very sad.
Ken Hull did NOT disparage either biomedical treatments or Dr Enlander, and I feel your really should now desist from further insinuation.
“If that’s not proof enough, we know at least some of its staff support the NICE Guidelines even if NIMEA as a whole object to them”
Errr…….I do not recollect ever stating that I support the NICE Guidelines, so I am at a loss, yet again, to know what exactly you are talking about – if indeed you do. Yet again showing your ignorance about the NI MEA.
Perhaps, instead of “cherry picking” regarding a presentation given at one of our FREE conferences (2006) you should avail yourself of ALL of the facts – but yet again of course that would defeat your object of casting aspersions on the integrity of the NI MEA. Perhaps the Association should be flattered that you travelled to NI just to avail yourself of our FREE conference in the first place!?
I will not lower myself to comment on your twisted reasoning behind the support of the OT at the CFS Clinic at Belfast City Hospital – that is below contempt.
Now, I suggest you let me get on with the important work I do.
Mrs Jo Calder
Northern Ireland Administrator.
Most "mainstream" views of "ME" and "CFS" in the UK, on the part of both patients and physicians, are completely detached from reality.
"ME" and "CFS" are exactly the same thing. The latter label was invented by the pseudoscientific members of APA DSM Committee, who make up psychiatry, largely for the benefit of the drug companies that pay them large retainers.
http://www.bbc.co.uk/programmes/b00kf117
"ME" was created by neurologists because there was (and is) such stigma attached to seeing a psychiatrist in the UK. Well, it's not unreasonable to suggest that you'd have to be mad to believe anything that a psychiatrist says.
There is no scientific basis for either label. The very term "syndrome" says it all. A "syndrome" is a question mark; a black hole that hasn't been explored.
Part of the problem is the fundamental weakness or flaw at the heart of medicine: in practice, it is the labelling and treatment of symptoms. In fact, most specialisms are based on symptoms.
Sure, a few lab tests are run, here and there, but those tests are the ones, which are available or of which doctors have knowledge: they aren't necessarily relevant to the investigation of the cause of a condition. A lot of the "science" in medicine is bogus (even in surgery). The conclusions, which doctors or drug companies want to reach, are drawn up and then "evidence" is manufactured or twisted to suit.
In my opinion, the superficiality of medical practice and the delusions of doctors, which amount to a kind of religion, are the main reasons why medics are generally incapable of curing anyone; of really treating disease.
On top of that, there are selfish interests, such as the doctors' own [BMJ opinion polls tell us that 85% of British doctors always put their own interests before those of their patients. How does that fit in with public perception?] and the downright evil pharmaceutical industry, which controls 90% of research funding and actively tries to eliminate or marginalise any critics within medicine.
Of course, doctors and drug companies aren't really different from anyone else, in the beginning: the reason why they do so much harm is that they are given almost unlimited power (and for that we must blame the snobbery and greed of politicians, senior civil servants and judges, all of whom put those corporate interests before the lives of ordinary people).
There is no doubt that the vast majority of patients, who are unfortunate enough to have been labelled with "CFS" or "ME" have illnesses with physical causes. They don't have "CFS" or "ME", because those are meaningless terms, used by lazy and ignorant doctors.
Fortunately, there are some medics and scientists, who have never stopped trying to understand what makes "chronic fatigue" patients ill. It seems obvious to me that there are various causes; that the pathology is not the same in each case. When doctors suggest that it is the same, they are merely confirming that, beneath all the theatrical pretension and props, their thought processes are similar to those of their 16th-Century equivalents.
With any disease, some variation in symptoms is to be expected because of genetic differences between patients. [Again, this is something which the sort of people, who tend to study/ practice medicine have trouble accepting. They are often people with a need for absolute certainty. It doesn't matter that their answer is wrong: it matters only that there is an answer of some kind.] However, the variation between the sets of symptoms reported by ME/CFS patients is so wide that we must really be looking at a number of different diseases.
Basically, doctors think they are open-minded scientists but are, in reality, more like theologians with very closed minds and outdated attitudes. They have taken a problem they don't understand (and can't be bothered to investigate) and thrown it, along with all the sufferers, into a big bin, marked "CFS/ME".
Medicine (of the kind that is found in Northern Ireland's hospitals and General Parasites', sorry
Practitioners' surgeries) is a religion and that works both ways. It doesn't only have priests: it also has believers.
There are many patients, who need to believe that doctors are decent people, who are doing their best to help those in suffering. Salvation can be achieved by participating in the pharmaceutical Eucharist: a cure is only a few pills away. It is probably impossible, in many cases, to dispel such beliefs as they are based on emotion or sentiment and (wilfully) ignore all the evidence to the contrary.
That may sound very negative to some but I don't see it like that. What has been offered, by way of explanation and practical help, has, so far, been (at best) useless and (at worst) harmful. Therefore, if unhelpful approaches are cast aside, people will look for something better.
I think it's very important for sufferers to investigate and understand the causes and nature of their own conditions. If ultra-orthodox priests of the Church of Big Pharma won't or can't, then sufferers must look elsewhere.
One's history is the place to start. Medical notes are often useless because they really exist to keep doctors out of court, not to aid diagnosis and treatment. However, most people can remember what happened when they fell ill and a few can figure out the causes (particularly in the case of those, who have been victims of poisoning by prescription drugs or agricultural chemicals).
Most doctors don't have the knowledge or the courage to explore such causes [Another BMJ survey revealed that 50% of British doctors never discuss side effects with patients, presumably because they are terrified of drug companies.] but some, especially a few of those who have given the Health Service up as a bad job, do.
Charities should probably be raising money (a) to help individuals gain access to specialist clinics, where tests can be organised and (b) to fund independent research, probably outside the UK where facilities and attitudes are not stuck in the 1950s.
I truly believe that, with enough determination, significant progress could be made in perhaps only two or three years. The current models of medical practice (which have resulted in tens of thousands of people being abandoned to miserable, painful existences) have failed utterly.
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