-
Welcome to Phoenix Rising!
Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
To become a member, simply click the Register button at the top right.
Article: Coalition4ME/CFS Puts Out Call For Action on DSM-5 Proposal
- Thread starter Phoenix Rising Team
- Start date
Example of what can be done...
A number of diverse patient groups with stakeholder interest in DSM-5 proposals have been organized for a couple of years in order to maximise the number and quality of responses in these APA feedback exercises.
They are using ad hoc or existing websites to inform and motivate their patient group and the professionals associated with their particular illness or condition.
One organization is campaigning to have "Sensory Processing Disorder" added as a new category in DSM-5.
The issue of whether those affected by SPD would benefit from inclusion in DSM-5, or the validity of SPD as a diagnosis, is not relevant to this post or this thread. But I'm using it as an example of what can be done, if organizations or groups start early enough.
Currently, "Sensory Processing Disorder" is listed under 'Conditions Proposed by Outside Sources'.
On the SPD Foundation website, they have a page dedicated to DSM-5, another page with links for the media coverage they have achieved themselves, and for media coverage, generally, on the DSM-5 development process:
DSM Central on SPD Foundation site:
http://www.spdfoundation.net/dsmv.html
There is another page with resources for those making submissions or who are going to be approaching medical professionals, social workers, educators with experience of children and adults living with "SPD" to ask them to submit from the perspective of professional stakeholders, physicians, child psychiatrists and researchers etc.
http://www.spdfoundation.net/dsmvcomments.html
And we urgently need input from our own professionals.
It is welcomed that this Coalition of 8 US CFS/ME patient groups has put out a call for action at this late stage. But given that DSM-5 is a US publication, I would have liked to have seen at least one US patient group pick up on this issue and take it forward as an ongoing project, way back in 2009, in readiness for the first public review exercise last February to April.
I'd like to comment on the choice of (presumably stock) photographs used on the Coalition4ME/CFS website
An attractive young woman, healthy looking, glossy haired, nicely dressed and made up; an eager looking young medic and a happy family relaxing with a young baby...
Not exactly reflective of the reality of the lives that many of the patients with ME for whom I have undertaken personal advocacy work live.
Sure, unwashed hair, bedlinen that hasn't been changed for weeks and little prospect of having kids or possibly even a relationship, is maybe not the image this Coalition4ME/CFS seeks to project, but it would be a darned sight more honest.
Suzy
A number of diverse patient groups with stakeholder interest in DSM-5 proposals have been organized for a couple of years in order to maximise the number and quality of responses in these APA feedback exercises.
They are using ad hoc or existing websites to inform and motivate their patient group and the professionals associated with their particular illness or condition.
One organization is campaigning to have "Sensory Processing Disorder" added as a new category in DSM-5.
The issue of whether those affected by SPD would benefit from inclusion in DSM-5, or the validity of SPD as a diagnosis, is not relevant to this post or this thread. But I'm using it as an example of what can be done, if organizations or groups start early enough.
Currently, "Sensory Processing Disorder" is listed under 'Conditions Proposed by Outside Sources'.
On the SPD Foundation website, they have a page dedicated to DSM-5, another page with links for the media coverage they have achieved themselves, and for media coverage, generally, on the DSM-5 development process:
DSM Central on SPD Foundation site:
http://www.spdfoundation.net/dsmv.html
There is another page with resources for those making submissions or who are going to be approaching medical professionals, social workers, educators with experience of children and adults living with "SPD" to ask them to submit from the perspective of professional stakeholders, physicians, child psychiatrists and researchers etc.
http://www.spdfoundation.net/dsmvcomments.html
And we urgently need input from our own professionals.
It is welcomed that this Coalition of 8 US CFS/ME patient groups has put out a call for action at this late stage. But given that DSM-5 is a US publication, I would have liked to have seen at least one US patient group pick up on this issue and take it forward as an ongoing project, way back in 2009, in readiness for the first public review exercise last February to April.
I'd like to comment on the choice of (presumably stock) photographs used on the Coalition4ME/CFS website
An attractive young woman, healthy looking, glossy haired, nicely dressed and made up; an eager looking young medic and a happy family relaxing with a young baby...
Not exactly reflective of the reality of the lives that many of the patients with ME for whom I have undertaken personal advocacy work live.
Sure, unwashed hair, bedlinen that hasn't been changed for weeks and little prospect of having kids or possibly even a relationship, is maybe not the image this Coalition4ME/CFS seeks to project, but it would be a darned sight more honest.
Suzy
Is anyone up to co-ordinating a list of professionals to avoid duplication, also patient orgs?
Maybe a sticky post that one person can keep updated as they are advised about which professionals and which orgs have already been alerted?
I'm afraid I cannot take this on myself due to other commitments.
Maybe a sticky post that one person can keep updated as they are advised about which professionals and which orgs have already been alerted?
I'm afraid I cannot take this on myself due to other commitments.
here is quite large list of american and non-american ME/cfs organisations,maybe it can help you:
http://www.mecfsforums.com/wiki/Organizations_for_ME/CFS
Registration to submit is done on an individual basis.
I have advised against submitting petitions, that is, one individual submitting a letter or comment but signed by a list of others. The APA would have no way of determining whether the names added to an unverifiable petition were genuine or not.
I see no reason for the APA not to accept joint submissions from patient organizations or from coalitions of organizations, since the legitimacy of these organizations can be confirmed.
In fact, I have suggested to some of our smaller UK orgs, that if they do not have the resources to submit themselves or do not have a medical advisor or external professional associates who would be willing to prepare a submission for them, then would they at least consider submitting jointly with another UK patient org.
I cannot advise, however, how identical pro forma letters sent in by numbers of individuals would be received by the Work Groups.
Are the Work Groups reviewing individual concerns raised with them about their proposals or is consideration also being given to the numbers of those submitting the same concerns but via a pro forma?
It's not known.
My own preference would be to submit an individual response based around my own concerns, or an individual response that includes and reinforces some of the concerns already placed in the public domain, from either last year's submissions or this year's - though there are very few in the public domain, yet, for this year.
But that is my choice.
So I think this is a matter of personal preference, Camilla, since it's not known how the APA are viewing pro forma letters.
Suzy
Suzie,
I know that you feel a lot of frustration:
You are right but, we are where we are. We can only go on from this point and try to aggressively tackle the issue. I wish we can go back in time, but we can't. I think that our energies are better served by doing our best now and not keep looking back at the past mistakes. We can learn from our mistakes but when it keeps getting rubbed in, at that point it's just not effective anymore.
Thanks for your knowledgeable comments and contributions.
Nielk
I know that you feel a lot of frustration:
You are right but, we are where we are. We can only go on from this point and try to aggressively tackle the issue. I wish we can go back in time, but we can't. I think that our energies are better served by doing our best now and not keep looking back at the past mistakes. We can learn from our mistakes but when it keeps getting rubbed in, at that point it's just not effective anymore.
Thanks for your knowledgeable comments and contributions.
Nielk
As posted on the ME Association's two Facebook pages:
To date, among UK patient organizations, only Action for M.E. has confirmed that it intends to submit a response this year in the second DSM-5 public review process. Out of all the national UK orgs I have contacted several times since May 5, only Action for M.E. and TYMES Trust have acknowledged receipt of the material sent to them. Does the MEA intend to submit a response this year?
(I've asked MEA Chair of BoT, Neil Riley, three times now.)
To date, among UK patient organizations, only Action for M.E. has confirmed that it intends to submit a response this year in the second DSM-5 public review process. Out of all the national UK orgs I have contacted several times since May 5, only Action for M.E. and TYMES Trust have acknowledged receipt of the material sent to them. Does the MEA intend to submit a response this year?
(I've asked MEA Chair of BoT, Neil Riley, three times now.)
Neilk wrote:
Are you speaking in a personal capacity or are you associated with a US patient organization, and if so which one, please?
Are you speaking in a personal capacity or are you associated with a US patient organization, and if so which one, please?
For anyone who wishes to put in a submission, but has come late to the topic -
I have done an over view to help people come up to speed here: http://forums.phoenixrising.me/showthread.php?1893-the-psych-lobby-strikes-again-DSM-5-v.-WHO-s-ICD-in-the-US&p=184277&viewfull=1#post184277
And
A list of concerns / criticisms to go in a submission here: http://forums.phoenixrising.me/showthread.php?1893-the-psych-lobby-strikes-again-DSM-5-v.-WHO-s-ICD-in-the-US&p=184291&viewfull=1#post184291
Its not exaughstive, but designed to get your ideas flowing. Feel free to use them, but please put them in your own words - as originality of submissions is important to be effectivel
I have done an over view to help people come up to speed here: http://forums.phoenixrising.me/showthread.php?1893-the-psych-lobby-strikes-again-DSM-5-v.-WHO-s-ICD-in-the-US&p=184277&viewfull=1#post184277
And
A list of concerns / criticisms to go in a submission here: http://forums.phoenixrising.me/showthread.php?1893-the-psych-lobby-strikes-again-DSM-5-v.-WHO-s-ICD-in-the-US&p=184291&viewfull=1#post184291
Its not exaughstive, but designed to get your ideas flowing. Feel free to use them, but please put them in your own words - as originality of submissions is important to be effectivel
Purely personal capacity. Very ill personal capacity though.
Hi Andrew
It has been a very busy 12 month for the orgs
That is why it does not hurt to do what you did and drop them an email,and send them on some information they might not have.
We need to flag the coming APA DSM deadline with them and encourage them to make fresh submissions.
I have just started a thread in the forum asking people to do this.
I have also posted a list of arguments / ideas that arose from my reading of the proposed reforms. Some may or may not have been covered by the org's or others - but they might also spark fresh ideas for this second round of submissions.
Here is the thread: http://forums.phoenixrising.me/showthread.php?12201-DSM-IV-proposed-reforms-for-DSM-5-URGENT-Submissions-needed-NOW.-Help-is-here!
Thanks also to Cort for raising this issue on the front page, the coalition for its contribution and to Suzy Chapman for her tireless efforts here.
It has been a very busy 12 month for the orgs
That is why it does not hurt to do what you did and drop them an email,and send them on some information they might not have.
We need to flag the coming APA DSM deadline with them and encourage them to make fresh submissions.
I have just started a thread in the forum asking people to do this.
I have also posted a list of arguments / ideas that arose from my reading of the proposed reforms. Some may or may not have been covered by the org's or others - but they might also spark fresh ideas for this second round of submissions.
Here is the thread: http://forums.phoenixrising.me/showthread.php?12201-DSM-IV-proposed-reforms-for-DSM-5-URGENT-Submissions-needed-NOW.-Help-is-here!
Thanks also to Cort for raising this issue on the front page, the coalition for its contribution and to Suzy Chapman for her tireless efforts here.
@ nielk
In order to submit, one first needs to register via an online registration form.
A name, email address and country are required. Then an auto generated email is sent out with a temporary password. The password and registration email address are required when logging in to comment. Once logged in, the comment box is displayed at the foot of each category criteria page.
The system probably logs IP codes, too, as many sites do, when the registered account holder logs in and uploads their response. So for each response, a registered email address, a password, a name and a country (and probably the IP of the machine being used to upload) is recorded.
Multiple letters emanating from the same IP or IP range might be monitored.
Of course any system is open to abuse.
I'm not sure what your point is.
In order to submit, one first needs to register via an online registration form.
A name, email address and country are required. Then an auto generated email is sent out with a temporary password. The password and registration email address are required when logging in to comment. Once logged in, the comment box is displayed at the foot of each category criteria page.
The system probably logs IP codes, too, as many sites do, when the registered account holder logs in and uploads their response. So for each response, a registered email address, a password, a name and a country (and probably the IP of the machine being used to upload) is recorded.
Multiple letters emanating from the same IP or IP range might be monitored.
Of course any system is open to abuse.
I'm not sure what your point is.
A few people asked for clarification on the issues and how to submit comments. The following from the Coalition 4 ME/CFS web site may help...
1. High level summary of the issues
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.
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.
2. The DSM-5 position paper with further details on the issue and the process to submit comments. This is based on the DSM-5 proposal as it exists this year (May, 2011)
3. The response that was submitted to the DSM-5 teamhttp://www.coalition4mecfs.org/DSM5letter.html by the Coalition 4 ME/CFS.
As Suzy said, each person or organization needs to submit their own comments on the web site using the process listed in the position paper. As far as what to submit - you can either use the above materials to compose your own letter or use the letter directly. If you are able to put it in your own words, that is great. But if not, dont hesitate to use what the coalition submitted.
PM me if you have questions and I will try to help.
1. High level summary of the issues
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.
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.
2. The DSM-5 position paper with further details on the issue and the process to submit comments. This is based on the DSM-5 proposal as it exists this year (May, 2011)
3. The response that was submitted to the DSM-5 teamhttp://www.coalition4mecfs.org/DSM5letter.html by the Coalition 4 ME/CFS.
As Suzy said, each person or organization needs to submit their own comments on the web site using the process listed in the position paper. As far as what to submit - you can either use the above materials to compose your own letter or use the letter directly. If you are able to put it in your own words, that is great. But if not, dont hesitate to use what the coalition submitted.
PM me if you have questions and I will try to help.
Thank you everyone who is using their energy and brain resources to keep up with the details of what is happening with the DSM V! The DSM is not well-known outside the counseling/psychology world, so people don't realize the serious ramifications of how disorders are defined. I will definately write a letter and add my voice as a therapist and PWC.
Hi laura
Your contribution would be awesome!
You are right. People do not seem to be aware of the ramifications (asleep), in denial (XMRV is going to save the day - yet the reforms apply to all illnesses as a bolt on diagnosis) or simply dont care
It will be to late to do much about it - if it goes through and I bet those that did nothing - will be the ones who yell the loudest.
Hi glenp
I just tried to access the site and it is down. So may be try again a little later?
The DSM-5 Development site is down for UK access, too.
If the site is offline for a protracted period, I will write to Task Force member, Dr William Narrow, and request that an extension to the review period is given - especially since no prior notice was given by the APA of its intention to post revised criteria on May 4, given that the review period is only 6 weeks (the previous one was 10 weeks) and given that the Timeline, prior to the new Timeline published on May 4, had the public review period scheduled for August to September 30.
A May - June public review was therefore not anticipated, nor prepared for.
If the site is offline for a protracted period, I will write to Task Force member, Dr William Narrow, and request that an extension to the review period is given - especially since no prior notice was given by the APA of its intention to post revised criteria on May 4, given that the review period is only 6 weeks (the previous one was 10 weeks) and given that the Timeline, prior to the new Timeline published on May 4, had the public review period scheduled for August to September 30.
A May - June public review was therefore not anticipated, nor prepared for.