Me patients - susceptible weaklings?

[Anglia ME Action (UK)]

ME PATIENTS - SUSCEPTIBLE WEAKLINGS?

The ME community has, sadly, become accustomed to the claims of certain psychiatrists alleging that CFS (the one-size-fits-all label they prefer) is a "functional somatic syndrome" with the attendant implication that patients are somehow psychologically weak and susceptible to illness or illness-behaviour. Professor Peter White et al, for example, not only reiterate such views but go on to propose selecting and classifying such patients on the basis of genetic factors in the September 2009 report of the European Science Foundation (ESF) / European Medical Research Councils (EMRC) entitled: Understanding the genetic, physiological and psychological mechanisms underlying disabling medically unexplained symptoms and somatisation.[1]

Even within an ME activist community that rightly cites thousands of biomedical peer-reviewed papers to refute any claim that ME is a primary psychiatric illness however, the notion of some form of "susceptibility" within those who become ill is given currency by some on the basis of genetic inheritance. This worries me because I believe that such views are grossly over-simplistic and they assist our falling into the malign hands of those who seek to profit from our illness not being genuinely understood and cared for.

Whilst there is no doubt that differing genetic factors play some complex role in illness incidence and prognosis, the cause and effect relationship is not firmly established. Even though, for example, a minority of those affected with HIV do not develop noticeable illness or full-blown AIDS, it is in my view not practically useful to claim that only those who are genetically susceptible get ill from contact with HIV. To do so surely gives succour to Social-Darwinist or New-Age belief systems? If anybody gets HIV it is a serious matter. If health authorities advised that only those who are susceptible to AIDS should avoid unprotected sex it would clearly be both ludicrous and irresponsible.

Human beings, including ME patients, that currently inhabit this planet have earned the right to do so through aeons of evolutionary processes and biological struggle. Humans are hardy and successful creatures. Something extraordinary has however happened to the environment we live in over the past 100 years or so other than the usual ebb and flow in the war between bugs and mammalian immune-systems. The pathological insults that all of us face (chemicals, processed-food, radiological[2], novel bugs encountered through more travel and possibly bio-engineering, etc, etc) have increased exponentially compared to what was encountered a generation or so ago. Is it useful therefore to direct focus away from such increased pathological insults by labelling those who develop a whole range of resultant illness as genetically susceptible? I think not. I also think that if we do so we are on a slippery slope and easy prey to peddlers of malign agendas.

Speaking personally as an ME sufferer of some 25 adult years, I take offence at being described as becoming ill due to any "susceptibility". Since getting ME, my immune system has been clearly active and I have now had two independent doctors/labs confirm I suffered a degree of chemical poisoning. The particular chemicals have been identified and the story of similarly identifying a bug or bugs involved is work in progress. Before being ill I was happy, active, physically fit and led a normal life. I liked to laze in the sun and I liked to climb mountains. I did not regularly visit my doctor prior to getting ME and most certainly did not suffer abuse as a child. In short, key predisposing factors alleged by the psychiatric lobby to be statistically present in ME (or "CFS") patients were absent in my case. I do not believe I got ill because I was weak. I am quite certain I got ME because I was both poisoned and infected.

In my humble opinion, the biggest "susceptibility" problem ME patients face is the susceptibility of much of the medical profession, media, government and research-funding agencies to evidence-ignoring psychiatric theory.

Kevin Short.
21 December 2010.
contact@angliameaction.org.uk

Permission to repost.


ENDNOTES:

[1] Understanding the genetic, physiological and psychological mechanisms underlying disabling medically unexplained symptoms and somatisation.
http://www.esf.org/index.php?eID=tx...7485446&hash=133780e153fa8ef0ff02c62b9418b142

[2] See for example:
http://www.es-uk.info/research/index.asp

 

[Dolphin]

ME does not look like a purely hereditary illness.

Personally, I can cope if there is a genetic susceptibility element to it. I don't want avenues not looked at because they might upset people. Lots of conditions these days can have genetic elements e.g. diabetes, some breast cancer, etc. The difference to say 100 years ago is that this knowledge can give clues as to how to treat it. It might also help with diagnosis. Perhaps even be useful for prevention (although that mightn't help me directly).

People could be scared about a virus, particularly an AIDS-like retrovirus, being associated with our condition. I still think research should follow that angle.

We could be probably come up with reasons not to like lots of angles/ways that biomedical research might lead if we tried hard enough.

 

[Snow Leopard]

I have no problems with genomic research studies, however it must be understood that we still don't know that much about many of our genes. Statistical risk factors are just that - statistical, they do not prove causation until the underlying workings of the genes and polymorphisms in question are understood.
What I do object to is the poor quality genetic studies - eg when they test for just a handful of genes to fulfill speculative hypothesis.

 

[Dolphin]

One problem with some of the CDC research is the rubbish cohort they used (so-called "empiric" criteria, Reeves et al. 2005). Whatever sort of study is done using that will produce rubbish that isn't relevant to ME/CFS, either false positives or false negatives.

It should be remembered than gene expression studies are not the same as "hereditary" studies - factors apart from ones genes can influence gene expression e.g. if one had an infection, the gene expression levels for some genes would be different to before one had the infection (don't know the details).

 

[urbantravels]

I think that if we place value judgements on the idea of "susceptibility" by believing it's the equivalent of "weakness" or the like, we are falling into the same fallacy that is used by the "psychosocial" theorists to keep us in our place.

Obviously there is some reason why certain people get ME/CFS and others do not. Understanding these reasons will be absolutely crucial to gaining a better understanding of our disease. The problem with the "predisposing factors" claimed by the psychosocial group is that they are bad science - they don't hold up at all in the research, unless the research is twisted in certain ways (selecting bogus cohorts, cherrypicking evidence, etc.)

There undoubtably is a genetic component that makes some of us more "susceptible" to ME/CFS, whatever its cause may be. To say that is not to say that we are "weak" in some way. That line of thinking is very dangerous and leads to patient-blaming and an avoidance of responsibility by those who should be working to understand, treat and prevent our disease.

 

[Angela Kennedy]

ME does not look like a purely hereditary illness.

Personally, I can cope if there is a genetic susceptibility element to it. I don't want avenues not looked at because they might upset people. Lots of conditions these days can have genetic elements e.g. diabetes, some breast cancer, etc. The difference to say 100 years ago is that this knowledge can give clues as to how to treat it. It might also help with diagnosis. Perhaps even be useful for prevention (although that mightn't help me directly).

People could be scared about a virus, particularly an AIDS-like retrovirus, being associated with our condition. I still think research should follow that angle.

We could be probably come up with reasons not to like lots of angles/ways that biomedical research might lead if we tried hard enough.

But this White presentation is insinuating certain people are genetically 'susceptible' to hypochondria, abnormal health beliefs, maybe malingering or at least secondary gain, personality disorders, shiftlessness and other character flaws that make you all have the temerity to go to the doctors with a difficult to understand illness, cos having illnesses doctors don't understand is also part of the genetic problem you all have.

I wish I had an eye-rolling emoticon to hand.

 

[Angela Kennedy]

I wish I had an eye-rolling emoticon to hand.

The eye rolling relates to the psychogenic explanations from White et al by the way!

 

[Dolphin]

I've seen plenty of negative things said about people with ME/CFS without any recourse to genetics - genetics isn't brought in most negative stuff that I have read that I recall.

Also, if people with ME/CFS are no more genetically susceptible, then other things start getting looked at e.g. lifestyle, family environment, what happened you as a child, etc., which is hardly any better and perhaps worse. And something that doesn't have a genetic element might potentially be more modifiable with behavioural and/or psychological techniques.

As I said, I think one can make a case that lots of angles are possibly dangerous to look at [not just to do with pre-disposing factors but in general - who wants to have an infectious retrovirus? (which perhaps might even be transmitted in more ways than AIDS?); indeed, it's generally a criminal offense to have unprotected sex with somebody if one has AIDS as far as I know which could put people in a huge quandry at the present time. Still I prefer the research was done as in the long term it should help.].

 

[Angela Kennedy]

I've seen plenty of negative things said about people with ME/CFS without any recourse to genetics - genetics isn't brought in most negative stuff that I have read that I recall.

Also, if people with ME/CFS are no more genetically susceptible, then other things start getting looked at e.g. lifestyle, family environment, what happened you as a child, etc., which is hardly any better and perhaps worse. And something that doesn't have a genetic element might potentially be more modifiable with behavioural and/or psychological techniques.

As I said, I think one can make a case that lots of angles are possibly dangerous to look at [not just to do with pre-disposing factors but in general - who wants to have an infectious retrovirus? (which perhaps might even be transmitted in more ways than AIDS?); indeed, it's generally a criminal offense to have unprotected sex with somebody if one has AIDS as far as I know which could put people in a huge quandry at the present time. Still I prefer the research was done as in the long term it should help.].

But we're talking about the kind of research that Snow Leopard is conerned about here. Poor quality based on speculative hypotheses generating weak correlations assumed as fact.

And then - to prove Godwin 'right' there's the spectre of 'eugenics' and being subject to prejudiced actions because of bad science social Darwinian type belief system. Which is a whole other subject I can't do justice to here.

But we are talking really bad science, which to be honest I can't accept just because the alternative is as bad!

 

[Dolphin]

Poor quality based on speculative hypotheses generating weak correlations assumed as fact.

Assuming things as fact I think is where the problem is. But that can happen with lots of research.

I think genetics research could give researchers useful information.
Then the question is to do with relative risks and benefits. Which is quite a complex question.

 

[Enid]

What I call the "Wesseley Block" at it still.