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Response to Ellen Goudsmit 
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MISUNDERSTANDING re PACE
by Gurli Bagnall, 27 October, 2004
Due to poor health, I have to be selective about the issues I follow. When PACE raised its head, I put it on the back burner for two reasons. First, if pacing is to be studied in conjunction with CBT and GET, then it is simply more of the same psychiatric regurgitation we have become so used to. On the other hand, it is a waste of time and money to study pacing on its own as a coping strategy, for there IS only one expert in this regard and that is the patient. Whether he suffers ME, cancer, heart disease, Motor Neurone or any other physical ailment, it is not for others, however well qualified, to dictate how much activity that person can and should pursue.
Nonetheless, I am aware that PACE has become a very controversial subject so when I saw Ellen Goudsmit’s piece entitled “Misunderstandings re PACE”, I read it.
I would like to comment on some of the issues raised by Ms Goudsmit as being matters of general concern in regard to many aspects of ME.
Issue 1:
“The PACE Trial identifier is a scientific document and most of these are confidential, for interested parties only. It is right that confidentiality be respected.”
I cannot see that this identifier can be described as a scientific document. Surely the “science” component will be contained in the published results of the study and not at the proposal stage.
Also, as we know to our collective cost, this is not a test tube and Bunsen burner study. It is a study that is based on interpretation and/or misinterpretation of (largely) a series of questions which may or may not be biased towards a desired outcome.
“Secrecy” in this context is, I believe, a better word than “confidentiality. In these circumstances, I cannot see that there is anyone more deserving of being described as “an interested party” than a person who suffers ME.
Issue 2:
“One has to trust that the MEA made an informed decision. There is no reason to suggest that they didn’t.”
I have heard this sort of, “Trust me! I’m a doctor,” argument far too often to take it seriously.
Who within the MEA made the informed decision? Were the members given the full facts and invited to vote? If they had been, surely there would have been no need for the secrecy that now enshrouds what Ms Goudsmit calls the PACE trial identifier.
Issue 3:
“We cannot blame the MRC for a pro-psychiatric bias because they gave a grant to an application which they believe has the support of a large patient group.”
This argument is quite extraordinary. The MRC ignored the scientific information supplied to it along with the huge number of submissions which pleaded for research funding for disciplines other than psychiatry. As already discussed under Issue 2, it is a moot point as to whether or not the MRC had the “support of a large patient group” other than these submissions.
Issue 4:
“Patients are selected and assessed and go into one of the arms for treatment or ‘medical care’. The latter is of course no particular care, but people given placebos don’t get any care either. What all do get is a good assessment and lots of attention.”
It all boils down to the same thing. Whichever “one of the arms of medical care” a person is directed to, the only treatments to be researched are psychiatric. Where genuine ME is concerned (as opposed to the “Uncle Tom Cobbley an’ all”, CFS), the “good assessment and attention” will no doubt end in disaster for many as has already occurred.
As for getting lots of attention….is that really what Ms Goudsmit thinks this is about?
Issue 5:
“Researchers like randomized controlled trials. And that means patients lose out. This has to do with what scientists demand. It’s fairly standard. The place to argue this point is somewhere elike (sic) like the Bulletin of Medical Ethics.”
In the earlier days of AIDS, patients made their concerns felt and so much so, that the establishment had to reorganize research procedures to take into account the welfare of the subjects at least as much as that of science.
A number of medical authorities, and certainly the MRC and the government, are fully aware of the issues involved here and Ms Goudsmit’s suggestion that patients take their grievances to yet another authority, surprises me. It is a case of: Department A refers the person to Dept. B, who refers him to Dept. C who refers him to Dept. D etc etc. This simply allows the establishment to keep sick people on their (not so merry) merry-go-round, with red tape flying in all directions.
Issue 6:
“What one can argue is that it is pointless to test CBT/GET with pacing on its own. Pacing without emotional support is umlikely to yield interesting results. All one can predict is that people will not get worse. A more realistic comparison would be CBT/GET versus conselling/pacing.”
People will not get worse? People have already been hurt by psychiatric treatments! And just what sort of “interesting results” is Ms Goutsmit expecting in these circumstances?
Anyone who has knowledge of ME as defined by the ICD, will know that the only realistic approach is to award research funding to relevant disciplines. Patients know more about coping strategies than researchers, and there is already too much waste without funding another talk fest.
Issue 7:
“The Oxford criteria do not exclude people with ME per se because….. the Oxford criteria do not recognize ME as a neurological disease. They had to use the London criteria to select patients with ME….”
Marvellous! The WHO ICD has made it quite clear that ME is a neurological disease and cannot be included under mental disorders. So if the criteria that has been used for about 15 years doesn’t fit the occasion, the answer is simple! All you do is change it! But has this move really solved their problem.....?
Issue 8:
“The medical examination will exclude patients with medical diseases….”
That excludes ME for starters. Forgive me for being blunt, but something smells distinctly rotten here.
Issue 8:
“The Canadian guidelines, as has been pointed out before, are for clinical diagnosis only. To be used for research, they would require a bit of tweaking. That is now accepted.”
Pointed out by whom? And accepted by whom? Personally, I would be happy to take part in a trial that was based on the tweaked Canadian Guidelines - as long as I knew who the tweaker was and if indeed, tweaking was really necessary.
I have heard a lot of lame excuses and this one certainly belongs under that heading.
Issue 9:
“Perhaps certain activists are getting confused because of lack of knowledge and understanding.”
I think most ME sufferers are inured to patronizing remarks and this one is certainly not going to keep the opposition quiet.
I have been left somewhat bemused by Ms Goudsmit. She claims that her support of PACE is not blind but I find that hard to believe.
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To read more articles by Gurli Bagnall...
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