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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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Doctor Section?

Messages
28
Hi,

I'm new here and was wondering if you plan to create a doctor section, containing both "good" and "bad" doctors by state (per members experiences). I am desperate to find a good CFS/FM doctor who is interested in treating the root cause of my issues....not one who just prescribes pain pills & antidepressants.

Thanks!

Joy
 

Cort

Phoenix Rising Founder
What a big issue that is. I hope in the near future to put a Dr. evaluation page on the website that will allow people to rate the effectiveness of their doctors. It's taking a while but it is in progress (hopefully sooner rather than later). Its quite a difficult project! :D
 
Messages
28
Thanks Cort :D I really think it will be an excellent resource and addition to this site.

BTW...off topic here...I've tried sending you a couple of PM's, but it shows nothing in my sent box. Can you see if you got them and let me know?
 
S

SDD1244

Guest
Hi Joy,

You may want to check out Co-Cure's Good Doctor List (do a google search for the link).

Good luck !
 

kolowesi

Senior Member
Messages
267
Location
Central Texas
doctor information

One caveat about our naming names, describing treatments, and giving scores as to effectiveness: this could be dangerous in some states for some doctors.

In Texas, the State Board (a for-profit entity which stays in existence by fining doctors, which subpeonas patient's medical records which by ruling of the Supreme Court, belong to the patient, and which does not perform due diligence to weed out false reports), is financially motivated to bring doctors up on charges.

Eventually, an agreement is reached in which the doctor pays some tens of thousands of dollars as a fine for poor record-keeping, and is allowed to have his license back.

I know of one doctor being censured because he was a rival to the spouse of a doctor on the Board. I know of another who was turned in by a disgruntled employee who tried to blackmail him.

So it may not be safe for the doctors for us to discuss them. At least I would wonder how they would feel about it.

My local primary care doctor was afraid to order the Igenex Lyme test for me, even though it was not going through insurance. She felt that even ordering a test for Lyme was dangerous to her (OK, she is at one end of the spectrum of paranoia).

Lymenet manages this by private emails, but that would be a lot of work for someone.

Just wanted to bring up my questions. I think it's safe to mention published information as far as treatments go. I'm just not sure about subjective ratings, and treatment regimens which might not be in full context.

Kelly
 

Cort

Phoenix Rising Founder
An interesting point I had not thought of. After deciding to try this I did review other doctor review sites on the internet; they are several of them - so these doctors already have the potential of being reviewed.

I think this will could be something that the good doctors could use to point out how much good they're doing and of course for us to highlight how bad the bad doctors are - and steer away from them.

Hopefully the good will outweigh the bad.
 

Andrew

Senior Member
Messages
2,513
Location
Los Angeles, USA
Its quite a difficult project! :D
If everyone would start using the cocure doctor list, that would go a long way.

BTW, my local support group tried to put together a local doctor list. We never finished because of volunteer health problems. But the key questions we had were:

1. What were/are your symptoms. 2. How long is/was your treatment. 3. Nature of treatment. 4. Degree of improvement (if any). 5. Additional Comments
 

InvertedTree

Senior Member
Messages
166
I'd love to see a doctor list here where we can add our input and review what other people's experience is.

The co-cure list is not updated. They still have a doctor on their list who died 3 years ago in spite of being informed of this.

The benefit of having a current doctor list would be to see which doctor might be a good fit for our type of illness.
 
A

Aftermath

Guest
Doctor Reviews

Again, this is something that we have been thinking about, but we want to do it right.

As kolowesi capably pointed out, a "doctor review" type site where specific treatments are discussed to lead to persecution of individual physicians for using unauthorized treatments for a "psychological" illness.

For the short term, the best thing to do would be to have Cort compile a list on his Web site that he edits by hand with comments from readers.

As much as I like open discussion, I don't want to paint a target on anyone's back.