Tuesday, 6 May 2008

ME mincing

Logic has been cast aside as some geneticists have got more than a little carried away in trying to subdivide ME/CFS into genetic subtypes. Firstly I would like to state that I am not of the opinion that everyone with the ME/CFS label has nothing medically wrong with them.

However I think it is completely stupid to claim that all people with a ME/CFS label have the same 'disease', as the 'disease' has no specific symptoms, no specific signs, and no decent diagnostic tests. I think the medicalisation of these kind of so called 'diseases' as discrete entities when one cannot even define what the 'disease' is creates far more problems than it solves. That is not to say that many of these people do not have very real pathologies, however to lump them all together under the ME umbrella is nothing but foolish and short sighted as we are no way near understanding this condition as yet.

There are other conditions that are very poorly defined and hence come into the same trouble as ME/CFS, many of them rather vague and sometimes bogus psychiatric diagnoses, and one can't help but feel that the diagnosis of Irritable Bowel Syndrome is another steaming pile of poorly understood conditions that have been lazily dumped together in an attempt to feign a pretence for understanding things that are simply not yet understood.

Back to the case in hand, how on earth can geneticists claim to be able to subdivide up a condition into genetic subtypes when they cannot even define or diagnose this condition in the first place? I would argue that they cannot. More importantly pretending to understand things that are not understood is dangerous, as it prevents people from openly and honestly trying to understand these conditions better, as anyone who questions the existence of ME/CFS as a discrete pathological entity is written off in a rather annoying politically correct fashion.

There are also many cases of people who have had clear diagnoses missed and then been inappropriately labelled with ME or IBS, meaning that their real diagnosis went untreated. Also the more we medicalise the poorly understood then the more normal people with no problems will become medically labelled, and then start acting up to their label; I don't think this is a good thing either. The worried well will be happy though, the ever growing band of fashion conscious Gluten avoiding bored housewives will have a new act to follow.


ali said...

Even "ME" is quite a pejorative term. There may sometimes be myalgia, but as far as I'm aware, there is no evidence of encephalitis or myelitis in patients with chronic fatigue.

Garth Marenghi said...



the final paragraph of the graniad's article sums it up for me,

how can the public understand something that even the medical experts have no clue on?

Dee said...

I agree that ME/CFS is currently a big fluffy amorphous entity of a diagnosis. It's an easy diagnosis to make when one runs out of options and ideas on what else it could be.
However the research the article refers to, is trying to do exactly what you want. Untangle the big pile of fluff into distinct, testable diseases. Some of it might be diseases that are already known, some of it might be new. In the end there will hopefully be no longer a tangled mess, but a distinct and medically useful x, y and z.

The point is, there is a fluffy entity called ME/CFS and you can't turn it into something distinct and identifiable without dividing the pile and looking closely at the parts.

Flopsy said...

FF and other are missing the point of the paper by Kerr.

Try reading the paper - not the media reports which are the invention of journalists - not doctors or patients.

My Blood went into the Kerr study. The cohort had to fit the CDC criteria. So no big group of people with ME, CFS, CF, F and TATT.

We know that the CDC is not the best. Patients said that at the time it was invented - I certainly did.

The Kerr study showed which genes were expressing differently. There's some very useful stuff in the actual paper if you can be bothered to read it.

On the other hand I understand that it's easier to just slag things off in your blog. Lazy.