Holgate - 'Encouraging new ideas for ME/CFS research'

[A.B.]

Hi @Woolie - that's all very interesting - I'm not up to reading the full article but I've always wondered why psychiatrists who don't support this widespread and careless diagnosis of hysteria/somatoform disorder don't stand up for us specifically - PWME, that is - and mount a public challenge to how we're being treated.

This is one of the reasons why I have such a low opinion of psychology and psychiatry. Not everyone of them believes in somatization, and they know it has no scientific basis - yet they don't speak up against the systematic abuse of patients that has been going on for a century. One has to wonder why that is so - are they afraid that once one idea is questioned, other ideas will be more closely scrutinized as well?

 

[Woolie]

Hi @Woolie - that's all very interesting - I'm not up to reading the full article but I've always wondered why psychiatrists who don't support this widespread and careless diagnosis of hysteria/somatoform disorder don't stand up for us specifically - PWME, that is - and mount a public challenge to how we're being treated.

I think that the single thing that has shocked me most over the last 10-15 years of ME-hood - the period of time during which everything about ME has been overshadowed by psychiatrists - has been the deafening silence from the medical/psychiatric community.

Where have the frustrated NHS GPs and consultants been who know that this is an organic disease and are frustrated by the lack of effective treatment that they can give us? Why haven't they been putting a case for increased funding to the MRC? Why haven't psychiatrists been banding together to insist that it's ridiculous to claim every disease that doesn't show up on standard tests as a psychological illness? Why haven't they defended their own discipline, let alone us?

I don't know if you're up to it, @Woolie, but I'd love to see some of these psychiatrists who oppose this casual and ignorant use of the psychosomatic label being asked to write articles challenging how this appallingly bad science being used to hurt PWME so badly.

Hi @Sasha, To be honest, I don't get the impression that there are a lot of people within the discipline that think like Richard Webster does. Of if there are, their voice is being drowned out by the majority. Some do believe that somatoform disorders shouldn't be in their own category, but rather just be called anxiety disorders and such like. Or that they should be defined slightly differently, or measured slightly differently. But I don't think that's what you mean.

When the new version of the DSM, the diagnostic manual used by psychiatrists was being prepared not long ago, there was some discussion about the criteria for somatoform disorders (in the most recent edition now euphemistialy called "somantic symptom disorder"), which many complained were based entirely on somatic (physical) complaints that were medically unexplained. That is, if you didn't have a medical explanation, you were, by definition, mentally disordered. In the new edition, some moves were made to try and limit the definition, to those where were "excessively concerned, preoccupied or fearful" and whose fears cause "significant distress and dysfunction". But you can see its a judgement call on the part of the doctor - I'm sure the majority of us have doctors who don't consider our condition to be as serious and debilitating as we do, so by the judgement of those doctors, we would qualify.

The only recent article I've seen that even includes a few lines about whether the concept itself is sound is here:

Sharpe, M., & Mayou, R. (2004). Somatoform disorders: a help or hindrance to good patient care?. The British Journal of Psychiatry, 184(6), 465-467.

Of course, it could well be true that some people who are extremely anxious, depressed or otherwise troubled might experience physical symptoms that are a direct consequence of their inner turmoil. But before we could even say that for sure, we'd need to have some kind of theory as to what type of complaints we'd expect to see in which types of psychological disorders. And which we wouldn't. Otherwise, anything at all can fit. Either way, the idea of a distinct somatoform disorder is dodgy.

 

[Sasha]

Hi @Sasha, To be honest, I don't get the impression that there are a lot of people within the discipline that think like Richard Webster does. Of if there are, their voice is being drowned out by the majority. Some do believe that somatoform disorders shouldn't be in their own category, but rather just be called anxiety disorders and such like. Or that they should be defined slightly differently, or measured slightly differently. But I don't think that's what you mean.

That's a pity. There just seems to be a massive exercise in groupthink going on in psychiatry around this issue.

There must, of course, be psychiatrists who have contracted ME. I wonder what their experience has been.

 

[chipmunk1]

That's a pity. There just seems to be a massive exercise in groupthink going on in psychiatry around this issue.

There must, of course, be psychiatrists who have contracted ME. I wonder what their experience has been.

they are hiding and fearing ridicule from their peers.

 

[stridor]

It's a "chicken and egg" thing. I used to have Bipolar Disorder before I moved against mercury. Like it or not, I have had to embrace the psychiatric component to my illness.

At one time, it was common practice for a psychiatrist to make Axis I and Axis II diagnosis' on admission. Axis I being a psychiatric diagnosis and Axis II including things like Personality Disorders. Dreaded, these are thought of as characterological deficiencies by some caregivers and directly and indirectly impact the care a person receives (I am not interested in arguing this point, I am sharing my opinon).

Now-a-days, many psychiatrists withhold the Axis II until the Bipolar, Schizoaffective or whatever has been adequately addressed. It is known that when a person is ill that Personality Disorder traits can surface. Address the underlying illness and this goes away.
It's not just psych patients. Hospital staff talk about "Crohn's Personality" and "Renal Personality". Chronic illness can create the potential for these reactive changes.

I think that in 2011 at the peak of my illness that I was a different person than I am today. I watched as my Dr wrote "Personality Issues" into my chart. I saw his point. I was whiney, manipulative, argumentative, double-doctoring, general non-compliance with anything that I did not personally endorse and all-round pain in the ass. We have a different relationship now.

But, I am still quirky. And so is my sister and brother with Fibro....and her friend with fibro is too. Maybe we could do a poll.....how many here would be likely to be thought of as quirky by others? brad

 

[alex3619]

I encourage anyone whose brain is currently up to it to have a look at Richard Webster's original article and share in the outrage! see http://www.richardwebster.net/freudandhysteria.html.

I have the book. Most of your points have been raised on PR before, and I agree with all of them. It might not come out in a thread post but many of us have been looking into this for years, and there are Facebook forums devoted to what you are talking about. Many of us also have relevant training, but I don't know we have many neuropsychologists. Your insight would be welcome. I am writing a book on this, but for the moment its on hold as my cognition has declined too far for serious thinking.

 

[alex3619]

Maybe we could do a poll.....how many here would be likely to be thought of as quirky by others? brad

I have long regarded myself as quirky. This can be a good thing if it helps you think outside the box. I am happy you have made progress.

 

[alex3619]

This is one of the reasons why I have such a low opinion of psychology and psychiatry. Not everyone of them believes in somatization, and they know it has no scientific basis - yet they don't speak up against the systematic abuse of patients that has been going on for a century. One has to wonder why that is so - are they afraid that once one idea is questioned, other ideas will be more closely scrutinized as well?

To that you can add nearly all of the medical profession, plus government health agencies.

 

[Wildcat]

.
@Woolie, Michael Sharpe is in the vanguard of British psychiatrists who construct ME as a 'Funtional Somatic Syndrome', and a Fatigue condition. Professor Sharpe is also one of the three Principal Investigators on the PACE Trial.
.

 

[Wildcat]

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@Woolie and all. Re *somatic* and the DSMV

From MEagenda’s ‘The Elephant in the Room Series Two: Use of “Somatoform Disorders” and “Functional somatic syndromes” ‘


Note: CSSID stands for ‘Conceptual Issues in Somatoform and Similar Disorders’

http://meagenda.wordpress.com/2009/...m-disorders-and-functional-somatic-syndromes/


‘Richard Mayou and Michael Sharpe were members of the international CISSD Project, co-ordinated by Dr Richard Sykes between 2003 and 2007, and administered by UK patient organisation Action for M.E. Prof Michael Sharpe was the CISSD Project’s UK Chair; Prof Kurt Kroenke was the CISSD Project’s international chair.

In May 2005, in collaboration with Kurt Kroenke et al, Mayou and Sharpe, published a review in which the authors set out their proposals for revisions to the so-called “Somatoform Disorders” for DSM-V.


FREE Review Mayou R, Kirmayer LJ, Simon G, Kroenk K, Sharpe M: Somatoform disorders: time for a new approach in DSM-V. Am J Psychiatry 2005 May;162(5):847-855.

http://www.ncbi.nlm.nih.gov/pubmed/15863783
http://ajp.psychiatryonline.org/cgi/content/full/162/5/847
http://ajp.psychiatryonline.org/cgi/reprint/162/5/847 ‘


~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~





Also note: Posts on the DSMV developments and ME by @Dx Revision Watch on this Phoenix thread.
http://forums.phoenixrising.me/inde...ological-listings-uk.33628/page-4#post-521067




For updates on the DSMV revision process re ME:
http://dxrevisionwatch.com/

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[Woolie]

.
@Woolie and all. Re *somatic* and the DSMV

FREE Review Mayou R, Kirmayer LJ, Simon G, Kroenk K, Sharpe M: Somatoform disorders: time for a new approach in DSM-V. Am J Psychiatry 2005 May;162(5):847-855.

http://www.ncbi.nlm.nih.gov/pubmed/15863783
http://ajp.psychiatryonline.org/cgi/content/full/162/5/847
http://ajp.psychiatryonline.org/cgi/reprint/162/5/847 ‘

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@Wildcat , thanks for sharing all these links. Its great stuff. Also good to have the links to the Mayou et al paper (although coverage of the conceptual stuff is pretty light).

 

[Woolie]

I have the book. Most of your points have been raised on PR before, and I agree with all of them. It might not come out in a thread post but many of us have been looking into this for years, and there are Facebook forums devoted to what you are talking about. Many of us also have relevant training, but I don't know we have many neuropsychologists. Your insight would be welcome. I am writing a book on this, but for the moment its on hold as my cognition has declined too far for serious thinking.

@alex3619, thanks, but not sure my neuropsyc background offers much that's particularly unique, if you already have people with a psyc background. Except perhaps great skepticism about the usefulness of neuroimaging data in helping us understand ME....

 

[Woolie]

@Sasha, since last writing I have found one - yes, only one - further article in a Psychiatry journal that makes a serious effort to challenge the concept of psychogenic medicine. It is written before the most recent verison of hte DSM (diagnostic manual) came out, but as I mentioned above, the criticisms hold just as much to the new defintion as they did to the previous one (SFDs are somatoform disorders):

Sykes, R. (2006). Somatoform disorders in DSM-IV: Mental or physical disorders? Journal of psychosomatic research, 60(4), 341-344.

Highlights:
There are prima facie grounds for classifying SFDs as physical disorders since they are characterized by physical symptoms. The characterization of SFDs in DSM-IV does not provide adequate grounds for classifying them as mental disorders.
Conclusion: The spectrum of SFDs is drawn too widely in DSM-IV. At least some of the conditions now listed as SFDs in DSM-IV should be either given a dual diagnosis or classified simply as physical disorders.

 

[alex3619]

@Woolie, thanks for the reference. Many advocates dislike Sykes because he is associated with those pushing psychogenic illness, but he has a career of writing anti-psychogenic papers. I have blogged on this before, as he defined the psychogenic inference, which I have relabeled the psychogenic fallacy. He does appear to consider that psychogenic illnesses are valid though, just frequently misapplied. I do not currently consider any psychogenic illness to be valid.

 

[SueJohnPat]

http://www.meassociation.org.uk/201...ive-conference-in-september-13-november-2014/

Can't say I'm much liking this



Looks like we're being sold down the river (again) from where I stand.

It seems interesting that those here who attended the conference didn't seem to taking those ideas away from it.

I

I started this road through hell 7years ago and the emotional liability is getting worse but it is from a physical cause. In the beginning my symptoms were pain and exhaustion after coming down with w mild virus in Sept. 2006, Now if I am out for more then two hours I will often burst into tears for no reason. I find this happens if I overdo it. Needless to say I would rather feel "tired" then be like this. Was released from therapy consulted a psychiatrist who thought it was a physical problem . I think eventually "mental" illnesses will be found to have physical causes. I want to downplay these "mental" symptoms also because then we are thrown under the bus (a bunch if hypochondriac who are afraid to exercise !i
I was a community pharmacist before becoming ill and I would have never believed that are health care industry is strangled by vested interest (insurance industry ext.) it disgusts me how this illness is dismissed
I understannd your point because even though the whole article may be nuanced the psychological aspects can be cherry picked just like Cigna does to my long term disability case.
In our age.of sound bites the truth gets lost because due to intellectual laziness and wanting a "truth" that will cost less money and fits the agenda the powers that be want.

 

[Countrygirl]

they are hiding and fearing ridicule from their peers.

I have no doubt that you are absolutely right! As I have mentioned elsewhere on PR, I was phoned a little while ago by a local doctor who believed he had ME. I offered to send him information on the disease, but he was too fearful to give me his name and address. He told me that his colleagues regarded ME patients with such.........to use his word...........'contempt'...........that he was terrified that they would find out what he suffered from. He said he was going to tell them that he was leaving medicine on account of depression rather than ME as they regarded that with less 'contempt' than they did ME. I guess a psychiatrist would feel the same.

 

[chipmunk1]

I have no doubt that you are absolutely right! As I have mentioned elsewhere on PR, I was phoned a little while ago by a local doctor who believed he had ME. I offered to send him information on the disease, but he was too fearful to give me his name and address. He told me that his colleagues regarded ME patients with such.........to use his word...........'contempt'...........that he was terrified that they would find out what he suffered from. He said he was going to tell them that he was leaving medicine on account of depression rather than ME as they regarded that with less 'contempt' than they did ME. I guess a psychiatrist would feel the same.

i would guess there tremendous stigma within the medical community when it comes to somatisation and i read to a certain extent significant stigma when it comes to psychiatric illness among psychiatrists.

I think this highlights that what they want to make us to believe - that they don't look down on on somatisers and it's just a diagnosis that a patient wants to avoid because in their mind that the are not taken seriously and have a flawed character - is not true.

They look down on patients, despise them not all do but many. Just look at the personality characteristics they claim to have identified in somatisation.

How many studies exist that talk about somatisation disorders among physicians? I don't know of any. I did research this once and would find only one study where they would talk about this problem in "lowly" nurses. Apparently doctors don't get this illess or at least they don't want to admit they do.

http://mpkb.org/home/alternate/psychosomatic

Edward Jenner, the discoverer of the smallpox vaccine, complained of hysterical-type symptoms, an exquisite sensitivity to sound, in his final years alive. “Were I female,” Jenner wrote, “I would call it Hysterical – but in myself I know not what to call it….”60

 

[worldbackwards]

I think this highlights that what they want to make us to believe - that they don't look down on on somatisers and it's just a diagnosis that a patient wants to avoid because in their mind that the are not taken seriously and have a flawed character - is not true.

They look down on patients, despise them not all do but many. Just look at the personality characteristics they claim to have identified in somatisation.

I'm sure you could get an interesting paper out of why doctors dislike patients with 'unexplained symptoms', how disempowering it is for them, how they need to project their self-disgust on to the patient as a channel for the rage they feel towards themselves, etc.

It almost makes me want to become a psychiatrist!

 

[Countrygirl]

@Woolie, He does appear to consider that psychogenic illnesses are valid though, just frequently misapplied. I do not currently consider any psychogenic illness to be valid.

He has no medical qualification though so does this still carry weight?

 

[Sean]

I have no doubt that you are absolutely right! As I have mentioned elsewhere on PR, I was phoned a little while ago by a local doctor who believed he had ME. I offered to send him information on the disease, but he was too fearful to give me his name and address. He told me that his colleagues regarded ME patients with such.........to use his word...........'contempt'...........that he was terrified that they would find out what he suffered from. He said he was going to tell them that he was leaving medicine on account of depression rather than ME as they regarded that with less 'contempt' than they did ME. I guess a psychiatrist would feel the same.

This is almost too sad for words.

How the hell did the modern science-based era of medicine let itself get into this situation?