What resources are available to find an ME/CFS provider?

[Friend]

Where can I find a treating MECFS provider?

 

[SarahTee]

Facebook support groups can be good for local knowledge. And some support organisations keep a list of providers.

Which country do you live in?

 

[Friend]

Facebook support groups can be good for local knowledge. And some support organisations keep a list of providers.

Which country do you live in?

Hi Sarah,
I live in the USA, PA.

 

[tlh111]

Hi Friend,
Any luck with your search for physicians that treat ME in PA? I have been looking this past year in PA and basically have come up blank. Many searches have listed doctors that "have experience with ME/CFS", but I am having a great deal of trouble finding one with actual ME sufferers as patients.

 

[AnnaLamothe]

Where can I find a treating MECFS provider?

I have - after a 10 year duration of undiagnosed illness - been lucky to find and be under the care of an exceptional Infectious Disease Immunology in NY who diagnosed me with ME/CFS as well as reactivated EBV and HHV-6 as well as MCAS and treated me from a Bell's score of 20 to presently 80. He's very busy as one would imagine however is extremely proactive with regiments and readily available - I know the above posts are somewhat old however am happy to recommend as does offer telemedicine.

 

[Sophia Gram]

to recommend as does offer telemedicine.

How effective is it in treating ME/CFS? Probably more as a supportive therapy when minor counseling is needed, although of course I could be wrong.

 

[AnnaLamothe]

How effective is it in treating ME/CFS? Probably more as a supportive therapy when minor counseling is needed, although of course I could be wrong.

While there is considered no cure, there are innumerable treatment protocols targeted at both symptom management and mechanism of disease - and that includes viral reactivation and MCAS as well as dysautonomia. I experienced significant improvement in 3 years after being undiagnosed and sick with severe illness for over 10 years. I underwent substantive proactive therapy, not merely supportive therapy.

 

[cc1166]

While there is considered no cure, there are innumerable treatment protocols targeted at both symptom management and mechanism of disease - and that includes viral reactivation and MCAS as well as dysautonomia. I experienced significant improvement in 3 years after being undiagnosed and sick with severe illness for over 10 years. I underwent substantive proactive therapy, not merely supportive therapy.

Hi, I would be interested in your providers name and information, if they are accepting new patients? Thank you.

 

[AnnaLamothe]

Hi, I would be interested in your providers name and information, if they are accepting new patients? Thank you.

Hi - Michael Scoma MD - Infectious Disease Immunology - 212.756.9999 - private practice - I believe accepting new patients - in NY however offers telemedicine and prescribes to other states - very proactive and very reachable in my experience

 

[cc1166]

Hi - Michael Scoma MD - Infectious Disease Immunology - 212.756.9999 - private practice - I believe accepting new patients - in NY however offers telemedicine and prescribes to other states - very proactive and very reachable in my experience

Thank you so much!

 

[Ceecee]

Any ID doctors THat take medicare plus supplemental in NYC NJ?

 

[Seasprit]

Where can I find a treating MECFS provider?

Important to check whatever reviews you can find on any potential candidates. Be careful with the concierge docs w/ little experience who focus on "alternative treatments" but have few reviews to back them up. Also those running beauty focused Med Spas! I want a doc who will work with me and give feedback to various strategies based on research that I've found on sites like this. Read your own labwork on patient portals and look at trends overtime. You have to be your own best advocate and follow your instincts! Best wishes on your healing journey.