Dx Revision Watch
Suzy Chapman Owner of Dx Revision Watch
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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.
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This current review period has been around six weeks. The first review period was, I think, around ten weeks. This review period could have done with being at least a couple of months long to allow patient groups to present proposals to, and consult with their constituents, consult outside medical advisors etc and prepare their submissions
Hi all, sorry havent had time to read through all the post to check, but has anybody noticed in this DSM Validity Propositions 4-18-11.pdf? (235.7 KB, 3 views) who is in the references??? Michael Sharpe!!!! Wesselys best mate and one of the writers of the Oxford and Fukuda criteria!!
Sharpe M. Distinguishing malingering from psychiatric disorders. In Halligan PW, Bass C, Oakley DA, eds. Malingering and illness deception, Oxford: OUP, 2003.
Creed F, Guthrie E, Fink P, Henningsen P, Rief W, Sharpe M, White P: Is there a better term than "medically unexplained symptoms"? Journal of Psychosomatic Research 2010; 68(1):5-8
Dimsdale J, Sharma N, Sharpe M, What do physicians think about somatoform disorders? Unpublished
Kroenke K, Sharpe M, Sykes R, Revising the Classification of Somatoform, Disorders: Key Questions and Preliminary recommendations, Psychosomatics 2007 48:277-285 etc
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My view is that somethings that might help is contacting every doctor and scientist, anyone can think of on the planet, who thinks that these illnesses are physical, no matter what their views on the subject are and get them to submit objections and contact the press about what is happening. Drs like Hyde, Hooper, Dowsett, Mirza, Cheney, Peterson etc, etc, etc and try and create a united front of qualified doctors who will stand up against this.
Write to MPs and congressmen and see if any of them would be interested in getting involved.
As I see it the enemy is about to break through the gates and get everyone reclassified as being nuts, if this is allowed to happen then its game over, everyone with one of these diagnoses and all future generations are going to be left to suffer for the rest of their lives with no hope of help!! I urge everyone to do anything they can think of no matter how big or small that may help in stopping this happening!
All the best
This forum was first made aware of DSM-5 issues by me, back in November/December 2009.
There has been time for an organized campaign to have been initiated.
I am UK based and I maintain two websites and I research and report on ICD-11 and DSM-5, and latterly, ICD-10-CM (but am also involved in other ME issues). I am a carer and I have business commitments.
Someone in the US could have created a site specifically for DSM-5 back in early 2010, from the US perspective.
No-one did.
Look at the energy that has been poured into XMRV related threads on this forum. There is energy on these forums that could be tapped into.
I said this 12 months ago.
There are people on this forum who could be compiling lists of US and international medical professionals, clinicians, psychiatrists, lawyers, AHPs etc and contacting them.
Over the past couple of months, I have been juggling ICD-10-CM/CFSAC, DSM-5 and ICD-11, and as I've already said, I have domestic and business commitments.
There are
4,522 members of this list many of whom are in the US and more likely to be directly affected by these DSM-5 proposals, if they are not substantially revised or rejected following the field trials.
How many US members are actively approaching US and international clinicians or lobbying patient organizations or the media?
Suzy
This is very shocking. Especially when you think of the extent to which other stakeholders have participated.
It is deeply troubling to me, that this was prompted back in 2009 and more so, that CFS orgs have NOT ACTED on this.
It should not be left to patients. I agree.
I have only been at this forum for a short time. I have been following your posts on the ICDs, because I have studied them in the past and I have been concerned about their review for a little while.
There are a couple of problems I think Suzy.
Firstly, your good work and efforts has obviously been over shadowed by all the politics and excitement regarding XMRV.
Secondly, the ICDs and DSMs are rather dry and dull and they can be hard for pwME CFS to follow.
You provided excellent screen shots and detailed information, but I have had to go through your threads, a few times in order to absorb and follow all the information. Its tough.
People therefore gravitate to other threads and there are many here.
Still, you have obviously been diligently raising awareness on this issue here for some time.?
So I think these things have deterred people and also possibly that people - just did not get the significance of what you were trying to say?
I dont really know. But I am pretty shocked that you have been promoting this for so long and no one ''got it''.
I am continually dumb founded at how advocates etc are completely ignorant about the ICDs and their importance - so it is not a suprise to me to learn about the lack of interest in the DSM.
However, I am very angry that the CFS orgs have done nothing about responding to this. Because as you say - this should not be left up to patients or patient advocates! What on earth are they doing??
I was also distressed to see that deadline for the reasons you expressed.
How on earth, I thought, am I going to lobby the significant parties on this in time for their voices to be heard?
I tried to console myself by believing that the CFS org's would have the matter in hand, but judging by this last post of yours, I was wrong!
Frankly Suzy, if this does not end well - the CFS orgs will be to blame. They will have sent us all into the somatic illness category in a hand basket and they might as well shut up shop and call it a day - because if they were pushing it up hill to get the illness recognised and get researchers interested, how hard do they think it will be now?
These orgs are meant to be on top of these issues. If this pans out the way its looking, and the CFS orgs failed to lobby hard, consistently and effectively here, there will be a mass exodus in memberships when members learn that they dropped the ball in the worst possible way, at a moment most crucial. They will not be easily forgiven or forgotten.
Even though I have come to this late in the peace, I am doing what I can and will continue to do so if it all goes south.
I saw RLCs requests as good ideas. A media campaign (better late than never and perhaps will put some additional pressure on the APA) would be a very good idea.
I am not suggesting you take this on board Suzy
you are obviously doing all you can -and I did not read RLCs post to you suggesting that you do this either - I saw it as a general shout out to all those reading this thread and like RLC - am encouraging those who have the skills to put this together - to hop to it.
My skills etc lie elsewhere and I have been using them quietly to see what I can do to assist and get people fired up. I have also been working on my own submission.
I am saddened that people here did not ''get'' the significance of your message and took more action earlier. Again, I assumed that there was more work going on behind the scenes, but I was obviously wrong and I am very disappointed.