"Denial in medicine - Revisionism in medicine and the case of CFS" by Ellen Goudsmit

[Dolphin]

Ellen Goudsmit PhD has recently posted an essay she wrote "Denial in medicine - Revisionism in medicine and the case of CFS" here:
https://www.researchgate.net/public...elation_to_ME_and_CFS_in_the_1990s?ev=prf_pub

Unfortunately I think if you haven't published research, you won't be able to access it there but for people who can access it, I think it's interesting enough.

 

[Dolphin]

Here's what Ellen said about it on the MEA FB page:

https://www.facebook.com/permalink.php?story_fbid=723044331086561&id=171411469583186

I've added an old article analysing the psychologisation of ME in the 1990s to my papers available on ResearchGate. You can download it.

It must not be reproduced without permission.

As you'll see, I show how denial of evidence played a role (and I'm aware many authors knew what they were leaving out as I talked to them or wrote them with the literature that undermined their argument). I asked one of the doctors why he had taken such a subjective/political approach to ME but he could not explain why.

Denial, as opposed to psychologisation, is far less common now. The problem today is almost always man's tendency to repeat what everyone else is saying. There are exceptions of course but for the most part, there is an assumption that if enough people say\write it, the information is probably correct.

I don't know how long I've got left on this planet so wanted people to read my work, and not have to rely on other people's often mistaken ideas of who I was and what I'd done pre 2004. I think I also wanted to indicate that not all psychs think the same.

Before you ask, yes, I informed all those who needed to know. Sadly, many shoot the messenger. In short, I stuck my neck out and as most who do that find, it was not a great career move. I did what I did to try and help people. Reduce suffering. I refused to stand by and watch and I've paid for it.

Had I written it today, with the benefit of hindsight, it would be more objective and less journalistic. However, the info is, as far as I know, correct, and the tone reflects my frustration with what I perceived as pseudo- science. NB While it's history, consider it when you read an odd letter in the BMJ or follow strange medical decisions in places like Denmark.

Scientists are human. Given the harm caused by the claims and arguments I describe, I submit that my reaction was appropriate. I accept that it was hardly diplomatic and I haven't written anything remotely like it since then. Do note though that the diplomats didn't exactly achieve what I failed to achieve: good science re ME, precision and balanced articles in the BMJ and Lancet.

If I discover that my work is cited for dubious purposes, I shall remove the text immediately.

 

[Dolphin]

I thought it was interesting to see lots of specific papers and press coverage from the 1990s (and 2000) being challenged.
It also critiques more general, timeless positions

 

[Dolphin]

Extract from "Standard elements of denial, applied to medicine" section

5. Writers will argue that the victims have themselves to blame. The source of the problem is therefore not external but internal.

6. Writers often include a reasonable, uncontroversial supposition, e.g. that all illness is real or that decisions must be based on best evidence, to give the impression that their other arguments are equally valid.


7. Writers may suggest or imply that the victims are motivated by financial gains or that their demands for benefits are unjustified.


8. The negative characteristics of a minority are typically generalised to the majority. There are virtually no references to any positive attributes. Victims are portrayed as 'mad, bad and/or dangerous to know'.

 

[Dolphin]

One illness where there is evidence of a systematic attempt to deny the severity of symptoms, the role of external causes and the nature of the illness is CFS. In recent years, there have been a growing number of articles suggesting that the illness is no threat to sensible individuals, that the disability is primarily maintained by psychological factors and that it's eminently treatable using existing drugs and therapies. These accounts therefore give the impression that this is not a disorder which requires money to be spent on specialist tests, expensive virological or immunological research, let alone long term sickness benefits. In short, the message is that society does not need to be concerned about CFS.

 

[Dolphin]

Some of these article begin by distinguishing between variables which precipitate and those which perpetuate a condition. Here the tendency is to acknowledge a role for infections and other external factors as initiators of the acute illness, but to suggest that the symptoms are maintained almost entirely by social and psychological variables. This again gives the impression that the writers are taking a balanced approach and that they are not dismissing all evidence of disease. Of course this is just an illusion, since CFS is by definition a chronic illness

 

[Dolphin]

If one studies the above theory closely, one might wonder when the influence of the infectious agent ceases and why patients don't notice the switch? One might also ask how psycho-social factors cause exactly the same symptoms as the infection itself. Of course, by focusing on fatigue, writers do not have to explain other typical symptoms of CFS, such as sore throats, low grade fever, visual disturbances and intolerance to alcohol. Nor do they tend to spend much time describing the evidence linking infection with ongoing disease, such as the isolation of enteroviral RNA from the brain and muscles (McGarry et al 1994), or the various reports of immune activation (e.g. Cannon et al 1997, de Meirleir et al 2000, Lerner et al 1997). If they do mention this research, they will also point to the inconsistencies in the findings and play down their significance.

 

[Dolphin]

Despite the speculation and generalisation, there's little evidence of a causal relationship between 'rest' and CFS. For instance, people who spend long periods in bed out of necessity, e.g. after a fracture, generally do not develop CFS. If they report swollen glands or a raised temperature, the most likely cause is an infection, not a lack of exercise.

 

[Dolphin]

The denial of sound research and honest observations not only reflects the failure of peer review but also shows a lack of respect, for science and for colleagues. It effectively disempowers doctors and undermines their ability to provide optimal patient care. This may prolong the illness, exacerbate distress, damage the doctor-patient relationship and reduce people's trust in orthodox medicine.

 

[taniaaust1]

thanks

 

[Cheshire]

Thanks a lot!

Very insightful and in depth arguments

 

[zzz]

Unfortunately I think if you haven't published research, you won't be able to access it there but for people who can access it, I think it's interesting enough.

You can create a free account that can access this paper as long as you have a business or educational email address.

 

[SilverbladeTE]

The Medical Establishment is a *RELIGION*, it is not science, it is not caring with/fore the patient as primary, it is about enshrining the power, rights, privileges and wealth of the medical group

it is a very very common problem with social groups, "upper middle class" and "power" professional groups often the worst of all, for example, police, politicians, university tutors in their many forms (many great works of science have been repressed or buried due to jealousy by older professor etc)

 

[xchocoholic]

Thanks @Dolphin

I thought post #9 here hits the nail on the head. How can patients trust medical professionals knowing this.

And then it gets further complicated when you know that they know that we know this.

Tc .. x

 

[Jarod]

The denial of sound research and honest observations not only reflects the failure of peer review but also shows a lack of respect, for science and for colleagues. It effectively disempowers doctors and undermines their ability to provide optimal patient care. This may prolong the illness, exacerbate distress, damage the doctor-patient relationship and reduce people's trust in orthodox medicine.

My opinion today is that the grand plan for the planet is complicated. Extremely complicated. So much so, that having 100% clarity would just be unbelievable to almost everybody. Most people couldn't stomach the short term actions that need to be made to reach the final destination.

The only way to get from point "A" to point "B" is to simply deny some things. Not that everybody doing the denying understands the big picture....

I'm not happy about my personal situation at the moment, but realize eventually things are going to work out for the greater good.. Probably better than anybody could ever imagine....


Things are managed in an seemlingly heavy handed way sometimes, but if they were done in a totally freedom loving way probably the Klu Klux Klan would end up running the show.

 

[Snow Leopard]

It let me download by saying I had published papers, but before I actually signed up, so I dunno...