Resource Best Chronic Fatigue Syndrome and Fibromyalgia Practitioners 2015-11-02

[Cort]

Cort submitted a new resource:

Best Chronic Fatigue Syndrome and Fibromyalgia Practitioners - An online review system analysis

We're not exactly overflowing in good chronic fatigue syndrome and fibromyalgia doctors. In fact many people have trouble finding them even in large metropolitan areas and search for years looking for a good one. Some find a good one and stick with them through thick and thin. Others exhaust their resources or just give up.

[fright]View attachment 753 [/fright]With the high cost of medical treatment being able to quickly finding a good practitioner would be very beneficial.

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[Barbara]

How many of these doctors actually accept me patients? Would be good to know. Thanks.

 

[joyce.swing]

Just a couple of small details, Cort, I tried to put in a review, and it is hung up because I cant figure out how to enter date I first started seeing the practitioner.
Also - I think you need to add ANS problems or POTS which are virtually universal in ME/CFS in the reasons I saw the doctor.
This is a bonus! Thanks for putting it together. Wonderful!!

 

[Barbara]

Should say "new", not "me" patients. Sorry

 

[Cort]

Just a couple of small details, Cort, I tried to put in a review, and it is hung up because I cant figure out how to enter date I first started seeing the practitioner.
Also - I think you need to add ANS problems or POTS which are virtually universal in ME/CFS in the reasons I saw the doctor.
This is a bonus! Thanks for putting it together. Wonderful!!

Will do

 

[Cort]

How many of these doctors actually accept me patients? Would be good to know. Thanks.

Good question I have no idea!

 

[Debbie Iverson]

Thanks Cort, I can see this becoming an invaluable resource as it gets tweaked and grows. Fantastic idea.

 

[Debbie Iverson]

Thanks Cort, I can see this becoming an invaluable resource as it gets tweaked and grows. Fantastic idea.

I see only one neurologist on the list. Sure hope we can see some more "specialists" coming in from the neurology camp someday soon. =)

 

[Cort]

Thanks Debbie - I agree! The more people that use it - the more valuable it will become - so please everyone - rate someone! I'm sure everyone has seen scads of doctors! If you need help just PM me - I'm happy to put in any doctors you want.

 

[Debbie Iverson]

Thanks Debbie - I agree! The more people that use it - the more valuable it will become - so please everyone - rate someone! I'm sure everyone has seen scads of doctors! If you need help just PM me - I'm happy to put in any doctors you want.

Cort,

Can or should the ratings be applied to research doctors as well?

Having only seen my GP since diagnosis, I can't say I've had any ME/CFS treatment at all.

However, when I saw Dr. Baraniuk at Georgetown University for the exercise PEM study, he did offer useful advise that I've put into practice.

It might be helpful to rate doctors and their studies? It could make the difference in a decision to make a trip and be a lab rat.

 

[chris be]

Cort,

Belgium is not on the list (small country, next to the netherlands, same amount of inhabitants).
We have a famous FM,CVS specialist; Dr Kenny de Meirleir (Himmunitas Brussels)
His seminars on youtube are very interesting.

 

[Cort]

Cort,

Belgium is not on the list (small country, next to the netherlands, same amount of inhabitants).
We have a famous FM,CVS specialist; Dr Kenny de Meirleir (Himmunitas Brussels)
His seminars on youtube are very interesting.

Agreed about De Meirleir - Instead to adding to the list I truncated it - put Ireland, Netherlands, German and Belgium into Europe -
http://www.cortjohnson.org/forums/reviews/practitioner-reviews/germany/ . I can break the countries out again as the list grows. I did the same to a couple of other countries. Let me know if you need any help.

Cort,

Can or should the ratings be applied to research doctors as well?

Having only seen my GP since diagnosis, I can't say I've had any ME/CFS treatment at all.

However, when I saw Dr. Baraniuk at Georgetown University for the exercise PEM study, he did offer useful advise that I've put into practice.

It might be helpful to rate doctors and their studies? It could make the difference in a decision to make a trip and be a lab rat.

Hi Debbie for right - because it would require including a new section - I think I'll keep it as it is. We do have a clinical trial

 

[joyce.swing]

Good question I have no idea!

I also think it would be good to know. However, it is usually not fixed - doctors open and close their practices. Perhaps we could report if the practice is open and the length of wait when we have contact with the doctor, and enter that in the review of the practitioner.

 

[Seasprit]

Thank you Cort and all who contribute to this large undertaking. I'm from the Midwest and you can easily see that most of the expertise is coming from the east or west coast. I agree that "experts" can come from various fields and sometime a general practitioner who seem open to new research and working "with" their patients can be a God-send. I hope people will share those docs as well!

 

[SherriNC]

I am in NC and the doctors listed in my state likely have more patients from out of state than here, because they are so expensive that only the rich can afford them. I also think that neither takes insurance.

 

[Eva Nagy]

Cort submitted a new resource:

Best Chronic Fatigue Syndrome and Fibromyalgia Practitioners - An online review system analysis



Read more about this resource...

Cort I am very surprised to see a few Drs. in my area on the list. I had already been researching some new Doctors and sure enough they made the list. I would have to go through my emails with my PCP to see his comments about the ones I chose but I do remember him saying that one is very difficult to get into and to go to my alternate choice that I think is on your list. He stated both Doctors are very very good. I chose them after reviewing on various sites. I am so happy you're doing this. Eventually I think this will become an amazing resource for us all. It is possible to find out if they are accepting new patients and all that info would be good to add. Having as much information about each Dr. is valuable. Demeanor, wait time to get an appt as well as wait time to get into your appointment (avg. because some days Doctors have emergencies etc.), even a review of how the appointment went.

Further I would like to see information relating to the Doctor's opinion on supplements and more natural options like taking turmeric capsules, probiotics, etc. Not all Doctors believe in any of this helping and I would disagree since I know it has made a difference for me. Also do they work with you regarding meds and pain meds. I do not take any of the newer drugs on the market and prefer for example taking Neurontin (Gabapentin) vs. Lyrica which has been proven to have so many side effects that 2 of my own Doctors said the benefit does NOT outweigh the danger of that drug based on the severity of the side effects reported. (I know that for some Lyrica does help and they are happy but not many on my own group can take it and had severe reactions) All this surely would help cut down on the merry go round and would help a patient to chose a Dr. based more on their own beliefs as well.

Thank you so much!

 

[Waterlark24]

Cort submitted a new resource:

Best Chronic Fatigue Syndrome and Fibromyalgia Practitioners - An online review system analysis



Read more about this resource...

This list looks like what I've been searching for except it's almost 10 years old and most of these wonderful practitioners have retired or moved to heaven. Can you guide me to today's top ME/CFS & FM specialists? Please?

 

[Cort]

This list looks like what I've been searching for except it's almost 10 years old and most of these wonderful practitioners have retired or moved to heaven. Can you guide me to today's top ME/CFS & FM specialists? Please?

Yes, indeed. Health Rising will soon have a Map that will help you to find good practitioners. If you're aren't subscribed to Health Rising you might want to.

 

[Woundedwarrior]

Cort submitted a new resource:

Best Chronic Fatigue Syndrome and Fibromyalgia Practitioners - An online review system analysis



Read more about this resource...

We need basic safe-listing, either online globally or via local groups (but many places don't have them). That means doctors who -bottom line - recognise that PEM is harmful and strongly associated with deterioration. Everything else seems to be superfluous? They need to fit the Limitation of Consent criteria the patient keeps either in mind or on their medical records as 'standing orders', ie I do not consent to be seen or treated by anyone who regards ME/CFS as psychological or who is not following (insert name of ) Guideline. I don't want to give doctors negative reviews - I mean they may be great for treating haemorrhoids or something, but just not for ME/CFS and LC/ME! And doctors may be open to learning, which is a good reason to give them a chance to catch up with a CME or CPD course. I suggested one of the major organisations simply log every doctor who completes an online CME such as Dr Nina Muirhead's, ticking the box at the end that they are happy to follow this updated standard of care. But I think it hasn't happened.