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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 (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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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.
So is it worthwhile to log in and then just re-post the Coalition's response? Or do we all need to write responses with our own words in order to make them count?
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 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.
We can learn from our mistakes but when it keeps getting rubbed in, at that point it's just not effective anymore.
Neilk wrote:
Are you speaking in a personal capacity or are you associated with a US patient organization, and if so which one, please?
Don't Assume They Know
Some time ago I contacted one of the CFS Organizations and gave them a heads up about a breaking issue in CFS. Other pwc had advised me that this is not necessary, because in their position they would already know.
I contacted them anyway, with a brief explanation of the breaking issue. Only a few sentences to make it easier for them to get the gist of it and easier for me to write. They immediately emailed me back thanking me for bringing this to their attention, and asked if I had any other information that could help them get started. So I sent them the most pertinent links I had.
I'm not going to tell you which group this is, because my post is not about which group knows what. It is just to mention that even people in the thick of things need help being alerted to issues.
In my younger days I did activism work, and none of us automatically knew everything. And often it was tips from the public that helped us zero in on things.
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.
I cant log in to register - is anyone else having trouble?