Like many M.E. advocates I was shocked to read MERGE/MERUK's recent article where they explained that they no longer have any desire to study pure M.E. patient groups, and instead are going to study 'subgroups of 'ME/CFS' - meaning subgroups of 'CFS' or fatigue. That they only MIGHT include at some point, maybe, some M.E. patients as one 'subgroup.'
This study of mixed fatigued patient groups will help nobody, least of all M.E. patients which are unlikely to even be involved at all, let alone in a meaningful way. M.E. is not a subgroup of 'CFS' nor 'ME/CFS.' Fatigue illnesses are not subgroups of 'CFS' or 'ME/CFS' either, they are diseases in their own right (eg. FM, Lyme, candida, MS and so on).
'CFS' and 'ME/CFS' help nobody.
Considering this change, one wonders by what right they have to continue to retain the use of the term M.E. in any context. If you want to study groups of fatigue illnesses, you are of course free to do so, but you cannot ethically and scientifically claim at the same time that what you are saying relates to M.E.!
I am shocked that MERGE/MERUK, once one of the few 'good guys' has taken this terrible decision and new direction. The current work of this group and this group itself can no longer be supported in any way by M.E. advocates, tragically. We can only hope that somehow this decision will be reversed and good sense, science and ethics will again prevail.
I am too ill currently to write as I would like to on this topic myself so when I read this discussion of the issue in a political discussion groups I jumped at the idea of including it on my website. The authors were kind enough to agree for me to repost it here, I hope you find it interesting reading.
Jodi Bassett, 2009
This is from a letter I wrote to Neil Abbott at the time in response to their shocking recent press release which explained that MERUK/MERGE no longer were going to even try to study pure M.E. patient groups.
..Your admirable insistence on biomedical research when the research
scene is dominated by the psychiatric concept of the illness is
urgently needed.
However, there is concern among patient groups that the clarity needed
to maintain this concentration on biomedical research is getting lost.
Your article `Research Challenges in ME/CFS' accurately describes
the confused situation which impedes research. You rightly say,
`CFS is not a clean diagnosis,' explaining that there are different
definitions and `vague, non-specific symptoms.'
You state that it is difficult to study an illness with such a heterogeneous group
of patients. Research funding is not forthcoming. The biomedical world
is wary of a subject which is `coloured by the emphasis on psychosocial aspects
of the illness.'
Exactly! It is to achieve just this state of affairs that the murky
concept of CFS has been promoted.
I would suggest that all of the obstacles to research that you
describe have been deliberately created by the psychiatric lobby.
This group promotes the concept of CFS just so as to cloud the issue
in the ways you have described. The name CFS and its multiple flawed
definitions describe a `ragbag of common non-specific symptoms with
many causes, mistakenly labelled as a syndrome,' (1) as Vance Spence
quoted at MERUK's 2005 presentation (2).
It is the intention of the psychiatric lobby that the name `CFS'
should be a `diagnostic dustbin' creating an unstudiable heterogeneous
patient group and blocking research. My fear is that, in seeking to
study CFS or ME/CFS, MERUK is in danger of succumbing to what Martin
J. Walker called `the drive against science implicit in the
nomenclature debate' (3).
CFS does not exist. It cannot be studied. Although perhaps the
composite name ME/CFS was coined in an attempt to be conciliatory and
inclusive, it does not help matters. If anything, it further confuses
the issue. ME is a specific illness which has nothing in common with
non-existent and vaguely-defined CFS (not even necessarily the symptom
of `fatigue'). It is meaningless to lump the two together. ME/CFS is
also non-existent and also cannot be studied.
You are of course right that you must clarify what you are studying
before you can study it. However, the strategy you describe of
`subgrouping' patients on the basis of symptom clusters would mean
that MERUK gets bogged down in the CFS swamp. CFS or ME/CFS is a
chimera, and dealing with its subgroups would not be a scientific
exercise. It would be a meaningless task and it would waste MERUK's
precious time and resources.
The clear solution is to study ME and to avoid concepts such as CFS or
ME/CFS. You suggest `we could return to diagnosing "classic" Myalgic
Encephalomyelitis (M.E.), involving infectious onset, specific
neuromuscular symptoms and signs and a unique post-exercise
component.' Yes! This is the only way forward.
You mention the objection, `there are several different definitions,
none recognised by modern medicine or science today.' This is not the
case.
ME is a neurological illness with a clear definition and a homogenous
patient group. It has been recognised since 1969 by the WHO,
classification ICD-10 G 93.3. A body of research from the 1950s until
1988 proves the biomedical reality of the illness (as you know, in
1988 the psychiatric lobby-influenced CDC definition of CFS obscured
and obstructed further research into ME).
The Nightingale Definition of Myalgic Encephalomyelitis (M.E.) by Dr.
Byron Hyde (4) is the definition of ME respected by researchers who
are independent of the psychiatric lobby. This definition
incorporates the previous work of Dr. Melvin Ramsey and Dr. Elizabeth
Dowsett. An important feature of this definition is that it includes
testable signs. The fact that it includes diagnostic tests for ME
means that the Nightingale Definition can establish a patient group as
a basis for further research.
Using any other definition, MERUK cannot meaningfully proceed with
research. None of the CDC definitions of CFS (such as Holmes, Lloyd,
Fukuda) define a homogeneous patient group, as CFS is intrinsically
heterogeneous. This is also true of the (CDC-based) UK Oxford
definition. Similarly, the concept of ME/CFS does not describe a
homogenous patient group, and the 2003 Canadian definition therefore
fails. (As you say, the Canadian definition is an attempt to
`subgroup' patients, yet the only subgroup that can be defined is ME.)
As a person with ME, and on behalf of many others, I implore you to
focus on what you call `classic' ME as per the Nightingale Definition.
This will clarify the basis for MERUK's research, remove the obstacles
your article described, and clear the way forward for your work which
we so desperately need.
Lesley Ben, M.E. patient
Lesley,
Excellent letter! So glad you shared it with us.
I found the following statement by Dr. Abbot particularly disturbing:
"What can be done about this? We could return to diagnosing ‘classic’ myalgic encephalomyelitis ( ME ), involving an infectious onset, a variety of neuromuscular symptoms and signs, and a post-exercise component. But since there are several different definitions — none recognised by modern medicine or science today — it is hard to see that as a viable option in the short to medium term."
Dr. Abbot does admit earlier in his article that there are also several different "CFS" definitions, so the fact that there are several M.E. definitions is not really the issue. The problem is that modern medicine does not now "officially" recognize any of the historical definitions of M.E., (Ramsey, Dowsett, Wallis, Acheson, etc) because these more accurate definitions have been totally eclipsed by "CFS" with its inherent psychosocial paradigm.
Researchers bemoan this sad state of affairs, but seem loathe to distance themselves from the inadequate "CFS" definitions. "Official recognition", BTW, means the work has been published in a reputable medical journal.
I suspect there are thousands of patients like me who would put their money where their mouths are if some courageous researcher would take up biomedical research using Hyde's definition. We would then have confidence that at least the study is examining a homogeneous group in which patients clearly meet "classical" M.E. criteria.
Some bold researcher will have to swim against the tide and prove that Hyde's definition is worthy of use, or we'll get no where. Now that would be a cause worth supporting, wouldn't it?
Maureen, M.E. patient and advocate
Yes Maureen, I agree. I also saw the statement you quote as very
disturbing.
Abbot dispenses with what he calls 'classic ME': i.e. ME, but his
choice of adjective seems to imply that it's an old-fashioned concept,
superseded by the more scientifically modern 'CFS'. Historically, it
is true that ME has been superseded by 'CFS' in terms of general use -
but as we all know, this was not driven by science but by politics.
Abbot's two reasons for rejecting ME as a subject for research are
that 1) there are many definitions of ME, and 2) none of the
definitions are 'recognised by modern medicine or science today.'
Neither holds water:
1) As you say, there are also many definitions of CFS, e.g. the
succeeding CDC definitions which have changed in response to the
political climate (i.e. increasingly psychologising the concept of
'CFS'). The multiple CFS definitions differ from each other to the
extend of being mutually incompatible (which I believe is evidence of
the fact that they don't arise from a common scientific foundation,
but have changed in response to shifting political pressures).
In contrast, I would say that the multiple definitions of ME are not
mutually inconsistent in that way. It is clear that the various
researchers share a scientific foundation and are looking at the same
disease. The definitions do differ, reflecting the fact that medical
science has advanced over the years (e.g. Dr. Byron Hyde can avail
himself of modern brain scanning technology); however, Ramsay,
Richardson, Dowsett, and Hyde are fundamentally in accord. For
example, Hyde incorporates the work of his predecessors Ramsay,
Richardson and Dowsett.
Thus I would say the fact that there are many definitions can be used
against 'CFS,' but does not invalidate the definitions of ME.
2) Abbot states that ME is not 'recognised by modern medicine or
science today.' Where to start in answering this? I wondered if
Abbot was being a bit disingenuous here. He must know as well as we
do that there is no such thing as 'modern medicine or science,' in the
sense of an infallible body of impartial knowledge. There should be,
of course, but it doesn't work like that. Modern medicine and science
are up for grabs, and so far, in the case of ME, political forces are
winning. Research is being funded that validates the psychologisation
of the illness. (Credit where it's due - Abbot himself makes this
point - and it's useful to have this said by a research-funding insider.)
Further, MERUK (Abbot's organisation, formerly MERGE) used to be part
of the battle to shape 'modern medicine or science,' in that the
organisation was supposed to foster biomedical research that would
counter the dominant tide of psycho-social research. Given that he is
on the frontline of the process that contests and determines 'modern
medicine or science,' it seems strange that Abbot appeals to 'modern
medicine or science' as though some such thing exists elsewhere,
uncontested and sacrosanct.
The only sense in which it's true that ME is not recognised by 'modern
medicine or science today' is that as we know, there's a mass of
research on 'CFS' funded by the nexus of governments/ insurance
companies/ corporate interests, whereas the few (one?) researcher/s on
ME work on a shoestring. But surely Abbot doesn't mean that money and
political patronage create 'modern medicine or science'? He and MERUK
were supposed to be the David that would fight the massively-funded
Goliath.
So Abbot's reasons for rejecting ME don't really make sense. I wonder
if those weren't really his reasons, but just something he could say
that sounds plausible if not examined closely.
It is so tragic. MERUK should be the good guys! They used to be, I
believe. What they are supposed to do, facilitate biomedical
research, is so desperately needed. (NOT that the biomedical basis of
ME needs to be proven - that's been done already - but the illness
needs to be better understood, and of course the endless tsunami of
psycho-social 'CFS' research needs to be countered.)
I don't know what is behind the change. Why has MERUK changed from
supporting research in ME, to talking about 'ME/CFS'? (The change of
terminology is noticeable on their website - earlier research on ME is
reported, while later it is called 'ME/CFS'.) Is it that they have
received funding from sources which enforce this change? MERUK was
supposed to be independent of Government funding - the fact that it
was an independently-funded charity was supposed to ensure their
independence from this type of pressure. Or is it just that they saw
which way the wind is blowing, and wanted to jump on the bandwagon and
be part of the mainstream? Did they decide that it's too hard playing
the role of David, and they want to cosy up to Goliath and become part
of 'modern medicine and science'?
I later asked Abbot why MERUK has abandoned ME and taken up 'ME/CFS.'
I didn't get an answer to that question.
I also don't know why other people who were supposed to be good guys -
heroes! - like Malcolm Hooper, Margaret Williams and Eileen Marshall,
have done the same. They used to be ME advocates. Now they talk
about 'ME/CFS.' Why? Why? Why? Does anyone have any idea?
Best wishes,
Lesley, M.E. patient and advocate