the psych lobby strikes again: DSM-5 v. WHO's ICD in the US

rlc

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Hi Suzy, in no way was I in anyway criticising you, I think what you are doing is great, and like I say I support any and all action to get this stopped!!! Due to a number of reasons like poor health and focussing on other issues I have not been aware of this issue, and have only been made aware of it a little more than 24 hours ago when Insearchof PMed me about it.

What Im trying to say to everyone is Holy Crap guys, theyre about to change the name of your illness, once theyve done this the next thing you know if this goes through, is that both NICE and the CDC will have written Complex Somatic Syndrome Disorder Diagnostic Criteria, and say that CFS is now obsolete and is called CSSD. And everyones going to wake up one morning to find that they have been reclassified as having a mental illness!!!

And because the people doing this are in my opinion inherently evil and are likely to ignore good intentioned petitions, then some other ways need to be found to increase the pressure on these people to get it stopped before its too late. My ideas for what to do are some rattled of the top of my head by a very upset person who can see that everyone is about to be screwed over permanently by the Psych Lobby.

Im not saying I have any answers, just some suggestions. But again I will appeal to everyone to drop everything and focus on some ways to try and stop this happening before its too late. Theres going to be no point in focussing on voting for Chase and pondering about XMRV, if this is allowed to happen the next step will be that CFS cesses to exist, and every one will be reclassified as mentally ill, its what theyve been trying to do for years, and now that the Wessely School have Weaselled their way into the position of being able to re write the DSM this is what is going to happen unless there stopped!!!

Again Im not criticising, what youre doing is great!!!! Im appealing for everybody else to jump on board with you and come up with other ideas to help as well before it is too late!!!

All the best
 

insearchof

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Hi Suzy

ISO: I dont really know. But I am pretty shocked that you have been promoting this for so long and no one ''got it''.

ME Agenda: I have not said that no-one "got it"?
Appreciate that Suzy. Just to be clear, this was my speculative musing as I cannot understand why this was not taken up. I really cant and I am trying to make some sense of this.

Yes, a six week review period at short notice was a dirty move on the part of the APA. The next public review is scheduled for January-February 2012, and is said to be for two months, but the content of the DSM will most likely be a done deal by then
Yes, you confirmed my thoughts and concerns here.


But we only have three weeks.
Well, we will just have to do our best and get the forum members to at the very least - apply pressure to the orgs to submit.

I do appreciate that launching a campaign, lobbying patient orgs, building up links with, and the interest of the media, approaching professionals for their involvement is a lot harder for sick people than signing a petition or firing off form letters to officials and that this issue has ramifications beyond the US but nevertheless, I do feel that more work could have been done on this by US folk.
Yes, perhaps DSM 5 just wasnt as sexy as XMRV.

Sadly, it will be hard to get an XMRV test I would have thought, if CSSD develops and is carried across into the ICDs. It might though assist in providing a bolt on diagnosis of CSSD to those PWCFS who persisted (request made more than 2?) in their request for an XMRV test!

My own personal view is, that they will never be able to show XMRV to be the cause of CFS, because of the breadth of the CFS definition and the sub groups within it. At best, they will be able to say it is associated with a sub set.

If this goes through and it carries across to the ICDs then in the short term, it wont have a probable impact, but it is not hard to see that it would not take long (given how prolific and active the psychiatric lobby are at publishing material ) before CFS would be consumed by CSSD (the way ME was in CFS) as an alternative diagnosis to CFS especially given that many doctors do not want to deal with CFS patients and see many as hypochondriacs anyhow.

Further, if you had an existing CFS diagnosis and you persisted (request made more than twice?) in a request for an XMRV test or any other test for that matter, you might also find yourself with a bolt on diagnosis of CSSD.

If your assessment is that, it was not a matter of people not understanding the importance of this, then why just drop the ball mid game?

What I find ironic is - that the UK is driving this! What's that all about? Why isnt there a larger drive coming out of the USA for this? Are they all ok, with getting labelled as hyperchondriacs and being denied adequate health investigations and care?

Any how that is not relevant anymore. What is is that we do what we can from this point.
 
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If the APA go with the fallacies of those two new categories and include them in DSM 5, against the rational objections there are, there are nevertheless other strategies that can be followed even once DSM5 is born.

Again, I would suggest people read the two books (by Kutchins and Kirk and by Paula Caplan) I've recommended previously in order to understand what happens in DSM formation (and how irrational and unscientific it can be), and how it can be changed.

Nevertheless, the refusal/inability of the charities and advocacy organisations to have dealt with this in advance is outrageous, though people should be wise to this level of incompetence or in some cases sabotage by now, frankly.

What we've been seeing is a reification by proponents of psychogenic explanations of the logical fallacy of the so-called 'medically unexplained therefore psychogenic by default'. It's been a real campaign going on in their journals leading up to this time and the 'field trials' (themselves highly problematic, as the two books I've recommended show).

We have to also realise that even submitting to the APA is a hen house inhabitants submitting to foxes scenario.

I think if we realise that it's not 'the end' even if DSM5 includes these massive potentials for misdiagnoses! (we need to remember that is a key objection here by the way), but that long-term strategies are needed to protect the community (and likely anyone with an organic condition who isn't 'acting' the right way), we might be able to mitigate (or even overcome) this problem. But as we've seen, the self-appointed 'representatives' of this community have dropped the ball on this.

Despite all this - those of us who can should make submissions before June 15th, AND MAKE THEM PUBLIC. We need a record of the objections that were made in order to work on that information.
 

Cort

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Nevertheless, the refusal/inability of the charities and advocacy organisations to have dealt with this in advance is outrageous, though people should be wise to this level of incompetence or in some cases sabotage by now, frankly.
I can tell you that no one has contacted Phoenix Rising and asked for a statement. One person PM'ed me some months ago and asked me why I was not working on this. My answer was that I was overwhelmed as it was - I basically do all the writing for Phoenix Rising - and diving into an issue I literally knew nothing about just seemed like too much.

There are many issues in CFS that don't receive a modicum of the work that they should. That there was no RFA forthcoming from the Workshop, for instance, should have resulted, in my opinion, with a huge protest......

Phoenix Rising would be happy to produce a statement and publicize this issue more - with an article that gives enough basic information that people could write a decent letter on it...We could use some support in that area though.
 

insearchof

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Hi.

Cort, threads on this matter were posted here in 2009.

There are four principal operators of PR as I understand it.

I appreicate that there has been a lot going on in this last 18 months, and whilst a number of issues do not probably get the attention they deserve,
IMO, it is the responsibility of CFS org's to make sure they keep their fingers on the pulse and re prioritize, as and when the need arrives.

This is a very important issue, especially for Americans with CFS and required that sort of attention. There is still 15 days to do this in and maybe
with a bit of luck, they might extend the deadline for submissions, given that they moved it forward and took people by surprise.

It is not something that should overwhelm you. Especially given that the efforts of ME Agenda has made it quite easy.

I came to this topic late as well. However, thanks to ME Agenda's posts in this very thread - I was able to get enough of a handle on the matter to feel confident enough to understand the issues and tackle a submission.

Here's a quick approach/solution to this problem

Go back a couple of pages in this thread and you will find links ME Agenda provides, to:

*the most recent draft proposals of the APA
*the APA rationale for its introduction
*her articles (3) parts on why the proposal in its current form is a concern
*then have a quick read of a very short list of points raised in submissions by other CFS orgs


Estimated reading/comprehension time: 2 hours plus time allocated for writing an article.

I have read your posts on the complicated science of XMRV that I, personally, have had a difficult time understanding. Let me tell you DSM 5 is a cake walk in comparison.

If you are really keen, and have a bit more time to spare, you can do a pubmed search on the topic of psychiatric classifications or ''psychiatric DSM''- where there are a few articles listed which discuss the shortfalls of drafting diagnostic classifications under DSMs in psychiatry.
 

Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
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@ ISO

The issue of the potential for legal claims by patients against APA registered practitioners was one of the points mentioned in my own response, last year.

Incidently, Steven Krafchick, a CFSAC Committee member, a medical malpractice lawyer and attorney handling Fibromyalgia casework, was particularly concerned for the implications of these proposals for CFS, ME and FM patients.

@ Cort

I have no recollection of any submission on behalf of PR being published, last year.

There were two active threads at the time:

This one, that we are currently posting in:

http://forums.phoenixrising.me/show...s-again-DSM-5-v.-WHO-s-ICD-in-the-US&p=181916

and here:

http://forums.phoenixrising.me/showthread.php?3062-DSM5-Ticket-back-to-Reevesville

The latter thread was the one where many of the patient organization submissions and patient/advocate submissions were being posted and where I was collecting up them for publishing on my site on this page:

http://wp.me/PKrrB-AQ


I was given no copy of any submission on behalf of PR nor do I recall any mention of a submission on behalf of PR.

You presumably have a copy on file and I'd be pleased if you could place it in the public domain.


@ Rlc

Sorry, if it sounded as though I was biting your ankles.

It was Prof Hooper (Emeritus professor of medicinal chemistry) and Margaret Williams who compiled the response for the UK 25% ME Group, last year. There is a copy of their 12 page submission on the submissions page of my site, in Word .doc format.

I can upload a copy, here, too, if you would like one.

The 25% ME Group's medical advisors are Dr Nigel Speight (UK) and Dr Byron Hyde (Canada). Last year, I asked the 25% ME Group to pass on the key documents and concerns around DSM-5 proposals to both of their medical advisors and it was confirmed to me that these had been passed to Dr Speight and Dr Byron Hyde.

Over the weekend, I chased the following UK patient orgs:

Copy of email here:

Final Call for Action by UK patient orgs Second DSM-5 public comment period closes 15 June: http://wp.me/pKrrB-19G


Action for M.E.; The ME Association; AYME; The Young ME Sufferers Trust; The 25% ME Group; RiME; Invest in ME; BRAME; ME Research UK; Mrs Sue Waddle

I still have not had a single confirmation from any UK patient org that it intends to submit, this year.

I have suggested to Jane Colby (TYMES Trust) that she approach retired paediatrician, Dr Speight, as he has been closely associated with advocacy work for children for many years, if TYMES Trust, who are a very small organization does not have the resources to prepare a response, themselves.

Suzy
 

insearchof

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Hi Cort

Thanks. Good points. (Actually we did do a submission last year as I remember.)
Thats great news Cort.

Presumably it should not take you long to pull this out and put together an article on the issues for the front page - encouraging your fellow Americans to lobby and submit?

There is only 2 weeks until the deadline!
 

Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
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And because the people doing this are in my opinion inherently evil and are likely to ignore good intentioned petitions, then some other ways need to be found to increase the pressure on these people to get it stopped before its too late. My ideas for what to do are some rattled of the top of my head by a very upset person who can see that everyone is about to be screwed over permanently by the Psych Lobby.]

Im not saying I have any answers, just some suggestions.

A quick point with reference to something Rlc has said above.

Just in case there is any misunderstanding around Rlc's use of the phrase "likely to ignore good intentioned petitions", which I imagine Rlc was using in the sense of lobbying patient organizations to submit comment, or patients and advocates, themselves, submitting comment, I would like to clarify that to my knowledge no petitions of the "Add your name to this Petition" order have been set up around this issue.

I rarely support the setting up of petitions for any cause and I would not recommend any form of petition for this issue, but that comments should be tendered through the public review process, which means individual comments, submitted via an uploading editor, following registration on the DSM-5 Development site.

That is the process for this second public review exercise, as it was last year.

Nor do I recommend the submission of pro forma letters but would repeat what I had already posted several posts back which was:

All stakeholders are permitted to submit comment and the views of patients, carers, families and advocates are important.

But evidence-based submissions from the perspective of informed medical professionals - clinicians, psychiatrists, researchers, allied health professionals, lawyers and other professional end users are likely to have more influence.

National and state patient organizations also need to submit comment.
So if I sounded a little tetchy, Rlc, it was because I had just called (and have been calling since February 2010, when the first public review of criteria was held) for input from medical professionals and researchers. So I haven't just been contacting UK and international patient organizations - as I've expanded on in my PM to you, this afternoon.

Also Rlc, my alerts around the DSM-5 public review, don't just get published on this forum and my own website but on the Co-Cure Listserv mailing list to which medical professionals also subscribe - so you must forgive me if I also prickled a little at your use of the phrase "well meaning petitions".

Suzy
 

Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
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Just to clarify, I am not the person who approached Cort about why he has not so far published an article on the DSM-5 issue. But I was approached by Cort a few days ago.

On Friday, I provided him with links to the two key proposal documents and to background postings on my site, plus a link for copies of the submissions that were made, last year, for his reference - if he considers that he should give additional exposure to this issue.

As I have said to Cort, I've done an enormous amount of work researching and publicising this issue elsewhere since early 2009 (on these forums since late 2009) but I don't own this issue.

DSM-5 has international implications but I am in the UK. This issue needs/needed considerably more interest and involvement than it has received this last 12 months from the US perspective.

There are now just two weeks left before this year's comment period closes - yet the two DSM-5 threads are practically moribund.

There are over 4,500 registered members on this site.

@ ISO

I don't envisage the DSM-5 Task Force extending the comment period - not unless there is very low feedback from stakeholders, and perhaps not even then.

There is a third comment period scheduled for January - February 2012, for a period of a couple of months. But after the field trials and another round of revisions, there may be little motivation on the part of the Task Force Work Groups to make significant changes to what they publish early next year.


I'd like to publicly thank Maarten Maartensz for the coverage he has given and continues to give this issue on Nederlog

and Dr Alan Gurwitt, President of MassCFIDS, for the coverage his organization has given on the MassCFIDS website:

http://www.masscfids.org/advocacy

National advocacy efforts state concerns about revisions to DSM-V

Suzy
 

rlc

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Hi Suzy, no need to apologize, I had been unaware of this issue until very recently I have not been aware of all the amazing work you have been doing, my reaction when I first read about Michael Sharpe being involved in rewriting the DSM was this is as bad as Stalin being resurrected to rewrite the Human Rights Act, and if something isnt done immediately its going to be a total disaster for all CFS and ME suffers, which lead to a rather hasty post without catching up on the background reading that I would normally do in different circumstances.

Im completely amazed and appalled that all your work and this issue which is probably the most important thing to happen since the original 1988 Holmes definition, have been largely ignored for so long by the organizations that are supposed to be helping us!!

Thank you for all your hard work and determination!!!

I hope everybody will do everything they can to help in stopping these changes to the DSM from happening before its too late!!

All the best
 

rlc

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Hi Cort, I would like to suggest that as well as the PR site putting in a submission and putting information about this essential DSM issue on the front page. It would be an extremely good idea to put a sticky post in every single section of this forum to make sure that everyone knows what is going on, because it would appear that a large numbers of members are oblivious to it!! Who may be able to do something to help if they knew.

From past experience with this site whenever there is new information on XMRV published the majority of people become mesmerised by it, and spend large amounts of time and energy posting about their thoughts on it, As the Levy article has come out today this is more than likely going to happen again and unless a very concerted effort is made to make them aware of the significance of the changes to the DSM, because there is only a couple of weeks left!!! Its very likely that a lot of people will be distracted by the latest XMRV news and be completely unaware of it until it is too late. Im also aware that some journalists have published on comments about the views expressed by PR members regarding XMRV and they will more than likely be reading the site to see what the latest reactions to the Levy article are, and if the information on the DSM is highly visible there is a chance that they might pick up on it and write articles about it!

I also think it would be a good idea to send out an Email to all PR members to make them aware of the significance of the DSM changes, and that if they are allowed to go through its very likely that everyone will find themselves reclassified as being mentally ill.

All the best
 

Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
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Action for M.E. statement

http://forums.phoenixrising.me/newreply.php?do=postreply&t=1893


USA: complex somatic symptom disorder

01 June 2011

US patient organisations are lobbying against proposals to include a new psychiatric category, Complex Somatic Symptom Disorder (CSSD), in the American Diagnostic and Statistical Manual of Mental Disorders (DSM).


Version four of the manual (DSM-4) is under revision and version five (DSM-5) is due to be published May 2013.

The publication, which is produced by the American Psychiatric Association (APA), contains listings, definitions, and explanations of different psychiatric and psychological disorders.

In a letter last year, the CFIDS Association of America strongly urged the DSM-5 Task Force to abandon the proposed creation of CSSD saying:

(http://www.cfids.org/advocacy/2010/dsm5-statement.pdf )

The proposed DSM-5 revision correctly does not identify chronic fatigue syndrome (CFS) as a condition within the domain of mental disorders and the DSM. However, past discussions of the Somatic Symptoms Disorder Work Group have included such physiological disorders as chronic fatigue syndrome, irritable bowel syndrome and fibromyalgia as somatic presentations of mental disorders.

As drafted, the criteria for CSSD establish a Catch-22 paradox in which six months or more of a single or multiple somatic symptoms is classified as a mental disorder if the individual becomes excessively concerned about his or her health.

The Massachusetts CFIDS/ME & FM Association says:

The way CSSD is defined makes it possible to either mistakenly or intentionally diagnose CFIDS/ME or Fibromyalgia in this psychiatric category. Moreover, the greater concern is whether this change could potentially lead to the reclassification of these illnesses as psychiatric conditions under CSSD.

(http://www.masscfids.org/advocacy )

The APA DSM-5 development site says the draft is open for comment until 15 June.
(http://www.dsm5.org/Pages/Default.aspx )

UK campaigner Suzie Chapman has set up a website, Dx Revision Watch, which has further information.

Action for M.E. commented in response to the first consultation and will make a further representation in response to the second.
 

Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
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...Im completely amazed and appalled that all your work and this issue which is probably the most important thing to happen since the original 1988 Holmes definition, have been largely ignored for so long by the organizations that are supposed to be helping us!!

Thank you for your kind words, RLC.

It is the case that apart from MassCFIDS Association, none of the international patient orgs that I am aware of have had anything to say about DSM-5 since the first public review closed last April, 2010.

But I would not want newcomers to the thread to think that no responses were made in 2010, by international orgs.

All the following submitted and there may have been others:

Whittemore Peterson Institute, Steungroep CFS Netherlands, CFS Associazione Italiana, ME Association (did not consider that a response was necessary but endorsed the submission of Dr E Goudsmit), Action for M.E., Invest in ME, Mass. CFIDS/ME & FM, The CFIDS Association of America, Vermont CFIDS Association, IACFSME, The 25% ME Group.

As you see, Action for M.E. have announced, today, that they intend to submit a response in this second review. (They will be correcting my name.)

It was with much pleasure that I posted AfME's announcement on the Facebook Walls of the ME Association and a copy has been sent to CFIDS.

Suzy
 

Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
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Lancet and BMJ

http://www.lancet.com/journals/lancet/article/PIIS0140-6736(11)60743-5/fulltext

The Lancet, Volume 377, Issue 9780, Pages 1816 - 1817, 28 May 2011

doi:10.1016/S0140-6736(11)60743-5

The first flight of DSM-5

Niall Boyce a

The philosophical difficulties inherent in diagnosing mental illness are taken for granted by many psychiatrists. Yet it is important to remember that an entire branch of the modern medical profession relies on a diagnostic system in which imaging and laboratory methods can only exclude physical causes of presenting symptoms. The psychiatrist must rely on his or her judgment, and the wisdom of those predecessors and peers who constructed the psychiatric diagnostic manuals.
Thus the current revisi ...

Payment required for full article

------------

There was also an article in the BMJ a few weeks back that is free access:


http://www.bmj.com/content/342/bmj.d2548.full.pdf

MEDICALISATION

A new deal on disease definition

How do we replace the old panels of conflicted experts? Ray Moynihan investigates

Ray Moynihan author, journalist, and conjoint lecturer

University of Newcastle, Australia
 

Enid

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It occurs to in what I can see from the the Boyce article - psychiatric diagnostic system - imaging and lab methods to exclude physical causes leading to constructing a psychiatric diagnosis - assumes all current disease tests are infallible. Yet we know that is not so - viruses in the frame now take complex testing unused by all except the specialists. Short of correct diagnostic tools in the first place is clear.
 

Cort

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Hi Cort, I would like to suggest that as well as the PR site putting in a submission and putting information about this essential DSM issue on the front page. It would be an extremely good idea to put a sticky post in every single section of this forum to make sure that everyone knows what is going on, because it would appear that a large numbers of members are oblivious to it!! Who may be able to do something to help if they knew.

From past experience with this site whenever there is new information on XMRV published the majority of people become mesmerised by it, and spend large amounts of time and energy posting about their thoughts on it, As the Levy article has come out today this is more than likely going to happen again and unless a very concerted effort is made to make them aware of the significance of the changes to the DSM, because there is only a couple of weeks left!!! Its very likely that a lot of people will be distracted by the latest XMRV news and be completely unaware of it until it is too late. Im also aware that some journalists have published on comments about the views expressed by PR members regarding XMRV and they will more than likely be reading the site to see what the latest reactions to the Levy article are, and if the information on the DSM is highly visible there is a chance that they might pick up on it and write articles about it!

I also think it would be a good idea to send out an Email to all PR members to make them aware of the significance of the DSM changes, and that if they are allowed to go through its very likely that everyone will find themselves reclassified as being mentally ill.

All the best
I will send out an announcement in the Phoenix Rising Forum Newsletter and the PR Newsletter..
 

Cort

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New Player: Coalition4MECFS Jumps in

From the Front Page

_ http://forums.phoenixrising.me/cont...-ME-Call-To-Action-DSM-5-Proposal#new_comment

The Coalition4ME/CFS
- a coalition of US ME/CFS non-profit organizations - has issued a Call to Action on the impending DSM-5 proposal and provided information to assist organizations and patients in writing their own letter to the organizing committee. The submission period ends June 15th.
THE COALITION ANNOUNCEMENT


DSM-5 Background:

[FONT=Helvetica, Arial, sans-serif]Why this call to action is important to you:[/FONT]

[FONT=Helvetica, Arial, sans-serif]Among other changes, the DSM-5 proposal includes the establishment of a new category called Complex Somatic Symptom Disorder (CSSD). The criteria for a CSSD diagnosis include somatic symptoms that last more than 6 months and significantly disrupt life combined with the doctors assessment that the patient has a disproportionate concern about the medical seriousness of his symptoms. The guidelines also include recommendations of Cognitive Behavior Therapy (CBT) and antidepressants as the appropriate therapies. [/FONT]

[FONT=Helvetica, Arial, sans-serif]CSSD could prove disastrous for the ME/CFS patient and for patients with other diseases like Fibromyalgia, Gulf War Illness and IBS that are misunderstood, misdiagnosed and mistreated by the medical community at large. For doctors who view the ME/CFS patient as just depressed, it will be a small leap to decide that the patient has disproportionate and persistent concerns about the medical seriousness of one's symptoms and, as a result, inappropriately diagnose CSSD. Once diagnosed with CSSD, the implications for diagnosis, treatment, disability and insurance will be profound. [/FONT]

[FONT=Helvetica, Arial, sans-serif]The background and associated issues with the DSM-5 and CSSD can be found in the attached Complex Somatic Symptom Disorders Position Paper developed by the Coalition 4 ME/CFS. [/FONT]

See Full DSM - 5 position paper here

[FONT=Helvetica, Arial, sans-serif]What you can do:[/FONT]

[FONT=Helvetica, Arial, sans-serif]The Coalition 4 ME/CFS has sent a response to the APA on this issue, which you can find [/FONT][FONT=Helvetica, Arial, sans-serif]here[/FONT][FONT=Helvetica, Arial, sans-serif]. (Feel free to use this letter as a template for your response). The DSM-5 team also needs to hear from as many of you as possible about your concerns. Feel free to draw from the Coalition 4 ME/CFS letter for your own comments. Remember, this [/FONT][FONT=Helvetica, Arial, sans-serif]must be done by June 15, 2011. [/FONT]

[FONT=Helvetica, Arial, sans-serif]Here are the steps to follow to provide your input:[/FONT]
[FONT=Helvetica, Arial, sans-serif]1. Register on the[/FONT][FONT=Helvetica, Arial, sans-serif] DSM-5 web site [/FONT][FONT=Helvetica, Arial, sans-serif]to make comments. The Register Now site is in the upper right hand corner of the DSM-5 home page. You will receive a confirmation email with a temporary password that you will have to click on to complete registration. If you have registered previously, you should still have an account and can log in in the same box. [/FONT]

[FONT=Helvetica, Arial, sans-serif]2. Provide your comments directly on the [/FONT][FONT=Helvetica, Arial, sans-serif]CSSD page[/FONT][FONT=Helvetica, Arial, sans-serif]. It is probably easiest to create your comments outside of the interface and then copy them in. Bolding and other formatting appear to be lost when you copy your document in. [/FONT]

[FONT=Helvetica, Arial, sans-serif]Thank you,

Coalition 4 ME/CFS
[/FONT]


[FONT=Helvetica, Arial, sans-serif]
[/FONT]

[FONT=Helvetica, Arial, sans-serif]
[/FONT]
The Coalition4ME/CFS consists of the

  • CFS/Fibromyalgia Organization of Georgia, Inc.
  • CFS Knowledge Center
  • CFS Solutions of West Michigan
  • PANDORA Inc. - Patient Alliance for Neuroendocrineimmune
  • Disorders Organization for Research & Advocacy, Inc.
  • Phoenix Rising/Rocky Mountain CFS/ME & FM Association (RMCFA)
  • Vermont CFIDS Association Inc.
  • Wisconsin ME/CFS Association, Inc.
US ME/CFS Non-profit organizations are invited to join the Coalition.

Get on the Coalitions email list here: http://www.coalition4mecfs.org/contact.html
 

insearchof

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The following is for anyone that has come in late to this subject.

It is an overview to help you put in a short submission to the American Psychiatric Association.

Feel free to use what is here, but please do not cut and paste. To be effective, submissions must be original


Why this is important for persons in or outside of the USA

This will affect persons in the USA directly, but will also affect persons in other countries because DSMs are already used to varying degrees in countries outside of the USA.


It will apply to ME CFS FMS & XMRV


It will apply to all medical conditions, including persons with a ME CFS XMRV or FMS diagnosis.

The outcomes of some of the suggested reforms for persons with ME CFS FMS XMRV has some troubling considerations.

Please take some time to write and make a short submission expressing your concerns to the APA.


The deadline for submissions is 15th June 2011







DSM 5 - OVERVIEW: WHAT IS IT & WHATS IT ALL ABOUT


1. What is the DSM 5 and who is responsible for its modifications?

The APA is responsible for publishing the diagnostic manual on psychiatric illnesses. This is called the Diagnostic and Statistics Manual (DSM). It defines and classifies psychiatric illness

Currently APA is moving from DSM IV to DSM 5. Roman numerals are no longer employed.

The group within the APA responsible for drafting DSM 5 is called The Somatic Symptom Disorders Working Group (the working group)



2. Terminology


What is a Somatic Illness?

Somatic comes from the Greek word meaning body

In medicine it means of or associated with the body. Therefore somatic symptoms simply means symptoms of the body.

When the psychiatric arm of medicine use this term this is precisely what they mean: an illness of the body. Using this acknowledged medical term, the field of psychiatry believes that there are some somatic illness or symptoms of the body that are caused by a psychological dysfunction. The term somatic is a general medical term and as such, is not taken to mean that illness is caused this way only that the symptoms are of the body.

What is somatisation ?

Somatisation refers to the reporting of a large number of body symptoms to a doctor.

Where they fall into a recognised pattern, this might point to a functional somatic syndrome. CFS, FMS, IBS are examples of such

Health Anxiety (previously referred to as Hypochondriasis) is a related condition and is understood as excessive concerns about health and illness with a preoccupation of fear that they may have a serious disease. This persists despite medical evaluation and re assurance.



3. What changes are being proposed by the APA?


The changes include a proposal to change the existing classification from Somatisation disorders to Somatic Symptom Disorders

Somatisation disorder under prior DSMs : described people who have a history of many medically unexplained bodily symptoms (MUS) that started before the age of 30 years and which have led to repeated visits to doctors and/or significant impairment of occupation or social functioning.(1)


4. What are the reasons for these changes?

Doctors found the old terms confusing and were not fully utilising existing diagnoses

Different definitions meant true prevalence of the illness is not known, but is believed to be higher in clinical practice than initially thought

Some diagnoses required many symptoms and that they be present for many years and some are only concerned with current symptoms. However symptoms wax and wane

Persons in need are going without treatment

Old diagnoses place too much emphasis on medically unexplained symptoms (MUS)

The term MUS is undesirable because:

o It creates mind body dualism and many organic diseases are also can have cognitive disorder

o Patients mistake this term to mean medically undiagnosed and it creates tension
Between doctor and patient

o MUS cannot be reliably assessed

o They create an un necessary financial burden to the health care system



To address these concerns a new classification and will merge a number of diagnostic categories together. This is further justified because the illnesses share:

o Medically unexplained symptoms
o somatic symptoms and cognitive distortions
o involve presentation of medical symptoms and concerns about medical illnesses


The workgroup has combined the following old diagnoses:

Somatoform Disorders,
Psychological Factors Affecting Medical Condition (PFAMC), and
Factitious Disorders

into one group entitled Somatic Symptom Disorders

This change will also involve a merging of the following existing diagnostic classifications

Somatization disorder
Hypochondriasis
Undifferentiated somatoform disorders
Pain disorder

Factitious disorder will now be moved to the new classification of Other Disorders
So the chapter in draft form, for Somatic Symptom Disorders presently looks like this:

J 00 Complex Somatic Symptom Disorder
J 01 Simple Somatic Symptom Disorder
J 02 Illness Anxiety Disorder
J 03 Functional Neurological Disorder (Conversion Disorder)
J 04 Psychological Factors Affecting Medical Condition
J 05 Other Specified Somatic Symptom Disorder (The work group has not yet proposed criteria for this disorder.)
J 06 Unspecified Somatic Symptom Disorder | Pseudocyesis



4. Complex Somatic Smyptoms Disorder (CSSD) is the diagnosis category most relevant and which makes persons with ME and CFS most vulnerable to a psychiatric diagnosis.


It is not a reclassification or replacement of the existing medical criteria for CFS (Fukuda or other criteria). It will operate in addition to it. It will also apply equally to persons with all other organic diseases. Ie: cancer, heart disease, diabetes. Etc.



5. How do you qualify for a psychiatric diagnosis under CSSD?


There are two arms to this diagnosis.

The first has two main elements that must be present

(i) One or more symptoms that must be distressing or interfere with daily activity
(ii) Symptoms must be Somatic


Somatic symptoms alone (i.e. symptoms attributable to irritable bowel symptom) without cognitive distortion, will not be enough to attract this diagnosis.


If this arm is satisfied then the following three criteria must be satisfied


1. Somatic symptom or symptoms
2. Excessive thoughts, feelings, behaviours related to symptoms or associated health concerns
3. Chronicity: present for more than 6 months



1. Somatic Symptoms

(a) There must be one or more somatic symptoms AND
(b) they are distressing and or result in significant disruption to daily life



2. Excessive thoughts, feelings and behaviours related to symptoms.



Two of the following must be present

(a) High level of health related anxiety
(b) Disproportionate and persistent concerns about medical seriousness of symptoms
(c) Excessive time and energy devoted to these symptoms and or health concerns


3. Chronicity

Any symptom(s) need not be continually present, but the state of being symptomatic exists for 6 months or more.

Where there is a predominance of one aspect of meeting this criteria, optional diagnosis may apply.


For example if there are minimal symptoms but high related anxiety (previously hypochondriasis) the diagnosis of illness anxiety order may be more appropriate
Those whos predominant symptom is pain, might be more appropriately be diagnosed with adjustment disorder or psychological factors affecting a medical condition.


So CSSD may also serve as a portal for other such psychiatric diagnoses as well



6. What illnesses will be caught by CSSD and other SSD classifications?


CSSD criteria will operate as an addition to all existing medical illnesses, whether it is a well recognised organic disease cancer, heart disease, diabetes or a syndrome, such as ME CFS FMS. It will operate in relation to one symptom or many and where there is the defined cognitive distortion.



7. How is it likely to affect persons with CFS & FMS?


It is believed that all persons who:

(i) may be eligible for or
(ii) who in fact have a diagnosis of ME CFS FMS or another syndrome,

would be vulnerable to this psychiatric diagnosis and assessment.


Where a patient has an existing diagnosis of ME CFS FMS, they may receive this psychiatric diagnosis in addition to their existing diagnosis(es). It will therefore bolt onto, your existing medical conditions.


It may also be used as consideration for other psychiatric conditions, where the number of symptoms that create anxiety are lower than those commonly associated with CSSD (i.e. anxiety disorder illness) etc.


SSDs are likely to be treated with CBT and antidepressants.


Further medical testing for persons with MUS and a SSD diagnosis may well be seen as unnecessary and be denied.


Although it remains unclear, these psychiatric diagnosis might also possibly affect:

*insurance payments
*disability support entitlements
*further medical care and treatment
*the right to travel (a mental illness may preclude entry to some countries)



8. Why persons with ME CFS FMS may be vulnerable

1. These illnesses present with a multitude of symptoms that cause distress and interference in daily activity


2. Symptoms fluctuate in number, duration and severity and many persist for more than 6 months.


3. Symptom number, type and variability make these illnesses stand out from others and carry an understandable level of anxiety. The new proposed CSSD diagnoses provides no objective marker as to what constitutes high and or excessive levels of anxiety or concern or behaviour to assess the complex illnesses or for persons with multiple health issues.


4. Levels of severe disability means many patients cannot make regular attendances to a doctor and repeating their symptoms or concerns over a period greater than 6 months may put them at risk for a CSSD diagnosis.


5. Current attitudes and a lack of adequate medical care can make attendances to doctors or ER an anxious affair, which might be mistaken for general anxiety about symptoms.


6. A lack of understanding on the nature and complexity of the illnesses by many doctors currently causes:

*patients being views as hypochondriacs
*patients health issues as being too difficult and time consuming

and this presents a danger that such doctors will assign these diagnoses and may in some instances choose to treat this as the primary diagnosis. This may preclude a patient seeking further medical assistance for the management of symptoms or investigation of other organic diseases.



9. Will the new SSD diagnoses lead to an increase in psychiatric diagnoses?

The APA remains uncertain but states:

Not necessarily. It may act as a portal with classifications to other psychiatric illness i.e.; anxiety illness disorder, adjustment disorder etc.
There is a lot of data however, which supports the idea that physicians find the old diagnoses confusing. This suggests there will be an increase in the use of and the diagnoses made under CSSD. (2)
Studies suggest that more than 75% of hypochondriasis patients would meet the diagnosis for CSSD. Those with high illness anxiety and minimal symptoms that fit CSSD would meet and more appropriately be diagnosed with illness anxiety disorder under DSM V proposals. (3)

As many doctors currently view ME CFS and FMS as hypochondriacs the above statistic indicates the danger that exists for patients to be assigned to this diagnostic criteria.

It might have been a good idea for the APA to know the impact of this in relation to syndromes that can sometimes be initially dismissed as simply random medically unexplained symptoms. With over 115 syndromes alone, as it may place a large demand on existing psychiatric services that cannot be met. There is evidence to suggest that this is a reasonable possibility based on events overseas. (4)


REFERENCES

1. Creed, Henningsen, Fink: Patients with medically unexplained symptoms and somatisation a challenge for European health care systems a draft White Paper for the European Association for Consultation-Liaison Psychiatry and Psychosomatics (EACLPP) MUS working group. See: http://dxrevisionwatch.wordpress.com/2010/...controversies/


2. APA Rationale for DSM 5 modifications http://dxrevisionwatch.wordpress.com/2011/...ematic-part-2/

3. Ibid

4. See fn 1


Further good reference material can be found here:

http://wp.me/PKrrB-AQ
 

insearchof

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Here is a list of concerns regarding the proposed changes to DSM 5 and CSSD which you might find useful when putting together your own submission.





GENERAL CRITICISMS AGAINST DSM 5 SSD and CSSD PROPOSED REFORMS and as they related to persons with ME CFS FMS


1. Extensive medical literature points to biophysical nature of the illnesses, which vary in sub set. These findings require a physician to investigate patients further and attempt to manage their symptoms.



2. Missed diagnoses in CFS is quite high (75%) and include, heart, thyroid, pancreatic, adrenal and other diseases and missed diagnoses (Hyde, B; Miraz)



3. The tension between doctors and patients created by the term medically unexplained symptoms, being mistaken for medically undiagnosed symptoms serves the purpose of reminding physicians to consider missed diagnoses.


4. Given the above matters, it would be in the best interests of patient care and the legal liabilities of psychiatrists and physicians that term MUS remain and or the criteria for CSSD be further qualified or narrowed.


5. The outcome of these reforms might result in patients avoiding or not receiving adequate medical care and attention for symptom management and or co existing disease states. This will result in unnecessary harm and suffering.


6. Patients may take to doctor shopping to avoid a diagnosis which is undesirable in the management of a complex illness



7. Should a CSSD be seen as a primary diagnosis, over time by some PWME CFS FMS physicians this would undermine over 80 years of medical research into these illnesses and skew important statistical data relating to prevalence, health care and other issues.



8. SSD and CSSD diagnoses will not lessen perceived costs associated with MUS, but add to them. Should health care costs associated with MUS be a concern then the answers may lay in:

*Further diagnostic education for physicians
*Reforms associated to clinical consults for the diagnosis and or management of complex illnesses.
*Centers for the diagnosis of complex and or rare diseases
*Additional funding for biomedical and biotechnical research


9. An increase in somatoform illnesses is thought likely, but there is no information provided on the pressure this would put on existing psychiatric services and the ability of patients to access them.



10. There is no consideration given to legal, economic and societal costs. Economic impacts and flow on effects may be significant and do not appear to have been addressed.


11. Statistical data on the prevalence of somatoform illnesses fluctuates widely. This may be due to the existing diagnostic definitions. However the data does raise the question as to how prevalent the illness really is, to justify the current proposals.



12. It is also noted that the rationale document authored by the APA contained a number of references to unpublished and incomplete studies. Does this suggest that the reforms are premature?


REFERENCES

APA Rationale Document

EACPPL draft White Paper here:http://dxrevisionwatch.wordpress.com/2010/...controversies/

Submissions made by other advocates here: http://dxrevisionwatch.wordpress.com/2011/...20-april-2010/

Data on misdiagnoses might be helpful here: http://www.wrongdiagnosis.com/intro/notdiagcommon.htmand http://www.wrongdiagnosis.com/intro/notdiagcommon.htm

http://wp.me/PKrrB-AQ