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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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IOM Gives Chronic Fatigue Syndrome New Name and Definition

Gingergrrl

Senior Member
Messages
16,171
@Dr.Patient I saw the comment that I think you wrote (someone copied into another thread, I did not log into medscape) and if it was your comment, I just want to say, "Well-done." And if it wasn't, then well-done to whoever did write it!
 

Gingergrrl

Senior Member
Messages
16,171
Thank you, that was me.

I thought so and it was very well written although it made me sad to hear about your current circumstances. I agree with you that if there were a way to create a group of former healthcare professionals (doctors, nurses, social workers, physical therapists, etc, etc) whose careers have been ended by ME/CFS (or SEID or whatever you want to call it) we might be able to provide a different perspective for research or advocacy. Do you have any ideas how to organize such a thing?
 

Gingergrrl

Senior Member
Messages
16,171
I have been thinking about setting up a website for this for about 2 years now, but had no strength to do it. May be soon I will do that!

@Dr.Patient I got your PM and would LOVE to help you to create a group for this. I have an appt so won't be able to respond until later this evening. I have no technical skills so would be useless as far as creating a website but I have lots of other ideas. I envision ways that former healthcare professionals can help this cause (worldwide- not just US professionals.) To be continued... :)
 

jeff_w

Senior Member
Messages
558
I have been thinking about setting up a website for this for about 2 years now, but had no strength to do it. May be soon I will do that!
@Dr.Patient I got your PM and would LOVE to help you to create a group for this. I have no technical skills so would be useless as far as creating a website but I have lots of other ideas. I envision ways that former healthcare professionals can help this cause (worldwide- not just US professionals.) To be continued... :)
@Dr.Patient and @Gingergrrl - I have designed and created many websites. I can do this part of the project. This is an extremely worthy cause and I can't think of a more important way to spend my energy.

When professionals (doctors, mental health workers, etc.) hear the ME/CFS stories of other professionals, they will be so much more likely to listen and take positive action.
 

Gingergrrl

Senior Member
Messages
16,171
@jeff_w Thank you for offering and you are awesome (I already knew that!) and we should maybe open a group PM for anyone interested in this idea. I want to hear exactly what @Dr.Patient envisioned and suspect it is similar to my idea and to what you are proposing. I also think it should involve university and medical school students (basically students in the healthcare field) who have been struck down by ME/CFS before even getting into their career in addition to someone like me who had a very successful career for 16 yrs which was abruptly ended by this illness.