The following is the FULL reply which the NI MEA submitted to the UTV LIfe blog on Tuesday 15th April in answer to the post made by Ian McIlroy. Somehow, this full version, which had been posted by the NI Administrator, did not appear on the blog as it had been orginally submitted.
In his long post, Ian McIlroy forgot to mention that he is a member of a rival ME charity, with an axe to grind, and something to gain from knocking NI MEA.
He is aggrieved that NI MEA receives DOH funding, and his organization does not. Funding is available to those who lobby for it. NI MEA lobbied at Government Buildings once in October and twice in November, including briefings to the CMO and the Assembly Health Committee. When was your organization last at Stormont, Ian?
Ian is angry and frustrated that NI MEA would not advertise on behalf of Dr. Derek Enlander. Dr. Enlander is a distinguished Ulsterman based at a famous New York Hospital. As a research lecturer, he is most welcome. However while he is in Belfast for a short period, Dr. Enlander
proposes to see patients. Some questions arise: does he intend to actually treat patients; if so how will he supervise their continuing care from 3000 miles away; and will his own regime conflict with a patient’s current NHS treatment? With such uncertainties, there can be no immediate endorsement from NI MEA for any visiting doctor.
Ian is upset that we invited a psychiatrist to a doctors’ conference at Lagan Valley Island last year. Now let’s get real here. He’s the consultant in charge of the Belfast ME clinic. Do you think the doctors in the audience wouldn’t have missed him if he had been excluded? Fine start to a conference that would have been. Our speakers included Drs. Willie Weir and Jonathan Kerr, both from London, and both leading opponents of the psychiatric model of ME.
He is aggrieved that NI MEA receives DOH funding, and his organization does not. Funding is available to those who lobby for it. NI MEA lobbied at Government Buildings once in October and twice in November, including briefings to the CMO and the Assembly Health Committee. When was your organization last at Stormont, Ian?
Ian is angry and frustrated that NI MEA would not advertise on behalf of Dr. Derek Enlander. Dr. Enlander is a distinguished Ulsterman based at a famous New York Hospital. As a research lecturer, he is most welcome. However while he is in Belfast for a short period, Dr. Enlander
proposes to see patients. Some questions arise: does he intend to actually treat patients; if so how will he supervise their continuing care from 3000 miles away; and will his own regime conflict with a patient’s current NHS treatment? With such uncertainties, there can be no immediate endorsement from NI MEA for any visiting doctor.
Ian is upset that we invited a psychiatrist to a doctors’ conference at Lagan Valley Island last year. Now let’s get real here. He’s the consultant in charge of the Belfast ME clinic. Do you think the doctors in the audience wouldn’t have missed him if he had been excluded? Fine start to a conference that would have been. Our speakers included Drs. Willie Weir and Jonathan Kerr, both from London, and both leading opponents of the psychiatric model of ME.
But whoops! - Ian forgot to mention those details also.
NIMEA committee members are all patients, all volunteers, and are all ill. Our work is always achieved at the cost of their own health.
When there is anything to be done, there is always a shortage of volunteers to assist. Despite that, our committee members do much good work. After all the work is done, those who were previously “too tired” to help, often receive a burst of energy, and direct venomous criticism at those colleagues who did make the effort. Ian has been rather inactive on the ME front, until yesterday. But now he’s in line for a black belt - as an armchair critic.
Jo Calder.
Administrator,
NIMEA.
4 comments:
"In his long post, Ian McIlroy forgot to mention that he is a member of a rival ME charity, with an axe to grind, and something to gain from knocking NIMEA."
Stop this Jo Calder, it's making NIMEA look really silly.
I'm not a member of any "rival" charity and don't even live in Ireland, yet I completely disagree with the NIMEA's Wessely school stance. Stop trying to trivialise the very serious issues; your arguments in support of BCH psychologisation are weak enough.
"He is aggrieved that NIMEA receives DOH funding, and his organization does not."
Here we have an explanation for why NIMEA won't dare criticise psychosocial clinics; it's more than their purse is worth.
"[...]
Some questions arise: does he [Dr Enlander in NY]
propose to actually treat patients; if so how will he supervise their
continuing care from 3000 miles away; and will his own regime
conflict with a patient’s current NHS treatment?"
I don't know anything about the circumstances of his treating patients in NI but I know for sure his biomedical regime will absolutely 100% conflict with NHS neglect and CBT/GET psychobabble and THANK GOD for that. The NIMEA should be thankful an ME expert will give his care, time and knowledge to neglected sufferers in NI instead of looking for excuses to prevent people seeing an informed medical doctor like good lapdogs of the psychosocial school. They should be demanding that the NHS adopts biomedical investigations and treatments forthwith and stop the NHS being the ME care embarrassment of the world.
That a supposed ME charity would reject an internationally respected biomedical ME expert's offer while supporting a CBT/GET clinic is absolutely staggering. No wonder pwME are still living in a medieval hell.
"With such uncertainties, there can be no immediate endorsement from NIMEA for any visiting doctor."
But if not the individual doctor what about the biomedical treatment approach; why does NIMEA "not advocate any form of particular treatment" and shun biomedical care for a disease which has over 3000 published findings and which ME experts the world over know are often to a degree treatable? Even the MEA purple book makes a few conservative recommendations; more can be found from world-standard international ME experts.There's no excuse for doctors "to do nothing" medically while at the same time supporting CBT/GET clinics, yet this is what NIMEA do!
"Ian is upset that we invited a psychiatrist to a doctors’ conference at Lagan Valley Island last year. Now let’s get real here. He’s the consultant in charge of the Belfast ME clinic. Do you think the doctors in the audience wouldn’t have missed him if he had been excluded? Fine start to a conference that would have been."
No, let's get real ME here: we don't want to promote inappropriate, dangerous quack psychobabble for this serious disease. Who cares what the audience "expect", surely the whole point is to *educate* the audience and if necessary disabuse them of any pro-psychiatric anti-ME prejudice, such as that of Dr Scott? If you feel you need to please the incumbents all the time, we will never have the fundamental revolution in ME care required If anything, not inviting a Wessleyist psychiatrist would have sent a robust signal that their damaging meddling and obstructive ME-denial is not at all welcome any longer in the field of ME.
"Our
speakers included Drs. Willie Weir and Jonathan Kerr, both from
London, and both leading opponents of the psychiatric model of ME.
But whoops! - Ian forgot to mention those details also."
There's no need to criticise indiscriminately. The problem is by including a psychiatrist you give credence to the mistaken belief that everyone is working towards the same goal with the same basic concept of the problem. You give a misleading impression that there is a "middle ground", that the best model of care is the fantastical "biopsychosocial" model, and that perhaps there's no such thing as a difference between organic and mental illnesses, all concepts which have been used damagingly against the medical model of ME and been hugely damaging to the care and perception of ME.
"NIMEA committee members are all patients, all volunteers, and are all ill. Our work is always achieved at the cost of their own health."
Unfortunately that work is in vain when you throw away your efforts supporting psychosocial clinics for ME which are not at all supported by any scientific evidence while evidence exists that CBT/GET is the single most harmful therapy for ME, and at the same time sneering at offers of biomedical treatment which has lots of evidence to support its appropriateness and sufferers with excrutiating symptoms are crying out for.
And I really have to wonder what the committee are ill with if in the 21st century they can't "advocate any form of particular" biomedical treatment and think psychosocial clinics lead by psychiatrists and involving nothing but CBT/GET are appropriate and safe for people with genuine G93.3 ME. If you really want to be perceived as part of the ME community you need to exhibit zero tolerance to psychologisation and inappropriate therapies. At the moment you are too compromised by your DoH fundings and confusion over what ME is and who you should be speaking for.
Ken Hull on UTV baldly and uncritically promoted CBT and GET without any reference to the immense damage it can do, while dismissing biomedical care advocated by a world-class ME specialist.
Then I learned that despite some reasonable statements in general and condemnation of NICE guidelines (though in a document that started out bending over backwards to praise them), NIMEA in fact wholly support the Belfast clinic even though it's run by a ME-denialist psychiatrist and his pet OT and provides only CBT/GET!
A load of excuses were given by Horace Reid; personal "testimonies" , that their aren't enough neurologists, that the OT is "friendly". All of which failed to the consistency test with regard to NIMEA's claim that:
"The CFS Service is also fully aware of the NI MEA views on CBT and GET, and that the only treatment that the NI MEA supports is PACING."
Evidently it seems these "views" are rather more indistinct than they'd have us believe. Clearly their proudly vaunted "dialogue" with the clinic hasn't caused the revolutionary volte-face needed by G93.3 biomedical ME sufferers.
The NIMEA is deeply conflicted between denying NICE yet supporting pro-NICE clinics such as the BCH, which can only be seen in a bad light by people with genuine ME.
"When there is anything to be done, there is always a shortage of
volunteers to assist. Despite that, our committee members do much
good work. After all the work is done, those who were previously “too tired” to help, often receive a burst of energy, and direct venomous criticism at those colleagues who did make the effort. Ian has been rather inactive on the ME front, until yesterday. But now he’s in line for a black belt - as an armchair critic.
Jo Calder."
What a load of embarrassing, spiteful, vaccuous twaddle which attempts to cover up for a charities' grave reneging on robuust advocacy with personal attacks and pathetic self-congatulatory pleas.
If Ms Calder knew anything about ME she'd know that it has little to do with being "too tired" and with that deep insult of ME, NIMEA loses what little right of respect it's earned as a serious pro-ME advocacy organisation. But we have to wonder what NIMEA know about ME, given their support for psychiatry for ME. You just couldn't make this up!
I think we can drop NIMEA in the same bin as AfME and AYME; ME-denialist pro-establishment psychiatric sell-outs who are obviously not interested in anything except getting their DoH wad, for which they'll happily defend psychosocial "care" for people with chronic "tiredness", as good little minions of the psychosocial school. Who needs Wessely any more when we such naive, confused, disengenious "ME" charities to do his bidding?
Mike
I wish to respond to comments posted by Jo Calder on the 15th of April.
I am not impressed with NIMEA’s comments where they refer to myself, as well as giving an inaccurate impression, they are just designed to deflect from the points that I made in my earlier posting.
The person who actually wrote the comments knows only too well that I have not been in any way actively involved with the other local ME charity they refer to since December 2006, when I had stood down from their committee. Yes I still am a member of the charity, but that is all.
Let me make it very clear, that I had not been in contact with anyone in the other local ME charity they refer to and no one there had any prior knowledge that I was going to make any comments in response to the UTV Life programme. The comments I made were my personal comments and I made them as an individual with ME living in Northern Ireland.
With regard to the comments concerning the other local ME charity and DOH funding. That is a matter for the officers of that charity. For what it is worth my own personal opinion, which I also had when I was on that charities committee, is that I would not have wanted to have DOH funding anyway. This is because I believe there is always going to be something of a feeling of not wanting to bite the hand that feeds you, influencing the charities officers. I feel for a charity to best represent it’s members, it is probably better not to be receiving funding from the same body providing services to it’s members, as this raises the issue of a conflict of interest. The other charity has also been well able to raise the funding it has required.
With regard to the comments made concerning Dr Derek Enlander’s visit, I should have thought that it would be in their members best interests for NIMEA to work with Dr Enlander, since he is prepared to give of his time to come to Northern Ireland to give ME patients here the benefit of his experience in biomedical investigation and treatment.
I would also ask why are NIMEA now calling the Belfast CFS Clinic the Belfast ME Clinic? I was not aware of it having changed its name. I only wish we had a proper ME Clinic in Northern Ireland. For those who are unaware of the history and medical politics of the names ME and CFS, my question may seem like nitpicking, but some local ME sufferers here might see this merely an attempt on behalf of NIMEA to legitimise their apparent support of the Belfast CFS Clinic to local sufferers.
With regard to the NIMEA giving the liaison psychiatrist in charge of the Belfast CFS Clinic (who does not believe ME to be a real physical illness, with the consequences that flow from that position) a platform to speak at their conferences, I should have thought that by not inviting him to speak NIMEA might actually have sent out a strong message that they do not endorse his views with regard to the illness and it’s treatment.
Finally, the concerns that I have expressed are not meant in any way to take away from the hard work put in by NIMEA committee members, who I know are all patients, volunteers, ill and do suffer because of the effort expended in the work they do. I do though have what I feel are legitimate concerns and have I believe a right to express them.
Ian McIlroy
Belfast
PS the remarks in you comments “Ian has been rather inactive on the ME front, until yesterday” I find particularly offensive as NIMEA does not know what I do on the ME front.
I have no doubt you are not impressed Ian, since you still seem determined to persist in your efforts to discredit the NI MEA, without, obviously being prepared to accept the TRUTH, and I make no apologies for saying that again.
Neither do I have a clue as to your remark “the person who actually wrote the comments knows only too well…..” Do you not think that I am perfectly capable of responding to innuendo, inferences and inaccuracies myself?
As to what charity or none you pay into is of no concern to me, either personally or professionally.
With regard to your spurious remark about the Core Funding – I will refer you to my reply to the ubiquitous “Mike” in relation to that.
Again, regarding Dr Enlander – see my response to “Mike”.
As you are not involved with the NI MEA then you are not cognizant with the views of our members and Committee regarding the CFS Clinic at BCH – but please be assured the Association does not need you to trouble yourself in advising it on any of its policies, its work, or its intentions.
The NI MEA is a democratic Association – it gives EVERYONE, members and non-members, a right to express their views – hence neither your or “Mike’s” blogs on its Blogspot have been deleted, edited or tampered with in any way. The Association is also adult enough to accept constructive criticism.
However, the NI MEA may reserve the right to do so in the future where it deems any further material to be inaccurate or may be malicious.
And, believe it or not, I happened to find your remarks particularly offensive too – and that you do not seem to know what I do on the ME front either. However, unlike you, I was unable to make my full point out in the wider public domain.
QED.
If you have any further complaints regarding the NI MEA then I suggest you put them in writing and submit them to the Management Committee, instead of sniping on this blog or on the wider internet forums. The NI MEA blog is for constructive remarks, views, chat and contact – not for a few malcontents to disparage the Association at will.
As I said to “Mike”, I have no intention in prolonging this futile haranguing any longer.
Mrs Jo Calder
Northern Ireland Administrator
NI MEA
Well now, Mike
For someone who doesn’t live in Northern Ireland, and therefore, I presume, working on a certain amount of hypothesis, a certain amount of second-hand knowledge, a bit of “internet whispering”, and a touch of blinkered vision, you seem determined to carry on this lack lustre, worn-out debate.
I, on the other hand have neither the time nor the inclination. I have a job to do – that of NI MEA Administrator, providing free services to all those with ME in Northern Ireland, and I do not intend to waste any more time after this on those who stubbornly refuse to accept the true facts.
I will refer you, yet again, to those TRUE facts, which you will find on our website and on the NI MEA blog. However, I will deal with a couple of your more spurious outbursts:
“It is making the NI MEA look silly”
On the contrary, the NI MEA has, until this, steadfastly refused to get involved with the sniping and back biting that has been directed at it for many years. This has been insidious, ungracious, and at times simply juvenile.
“Here we have an explanation for why the NI MEA won’t dare criticise psychosocial clinics; it’s more than their purse is worth”
That is just downright offensive. Given, of course, that you don’t actually live in Northern Ireland, you obviously have not been aware that the NI MEA had been turned down for 15 years for DHSS funding. We have only been granted funding on the proposals made in our Core Funding Application – in other words on MERIT; i.e. the NI MEA had enough going for it to be awarded a Grant. And, because of that Grant, we can now offer FREE membership, and FREE services to all. How many other ME and allied Charities do not charge membership fees, do not charge for Information Leaflets & Booklets, host free conferences for ME patients ………do I need to go on?
“The NI MEA should be thankful an ME expert will give his care……”.
I have no doubt that Dr Enlander is a highly qualified specialist medic, with a very caring ethos. I think that you are twisting the remark made to suit your own ends.
And, as a matter of interest, the NI MEA HAS an equally caring ME expert willing to give of his time – he is called Dr William Weir (I suggest you google him) and he is our Medical Advisor – we provide his advice and help FREE to those who need it – just one of our FREE services.
Neither are we “rejecting” any internationally respected biomedical expert – in fact we welcomed the valuable input last September of Dr Jonathan Kerr.
Finally, as I really cannot be bothered with dealing with the rest of your diatribe I will conclude :
“If Ms Calder knew anything about ME…..”
Mrs Calder knows quite a lot about ME since I took the illness in 1985…………back in the “good old days” when it was Yuppie Flu; spent 6 YEARS (not 6 months) trying to get a diagnosis; being told I had “depression”; being diagnosed as having TATT; trying to cope with a very young child; had about 20 different symptoms (so yes I do know it is more than “tiredness”) and now, 23 years later still would have “bad days”. I also have worked for the past 11 years for the NI MEA.
So, yet again, you display your total ignorance regarding the NI MEA and it’s only employee. I rest my case.
Mrs Jo Calder
Northern Ireland Administrator
NI MEA
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