Worlds Apart: The Doctors Who Treat Chronic Fatigue Syndrome and Fibromyalgia

Resource Worlds Apart: The Doctors Who Treat Chronic Fatigue Syndrome and Fibromyalgia

Cort

Founder of Health Rising and Phoenix Rising
Staff member
Cort submitted a new resource:

Worlds Apart: The Doctors who treat Chronic Fatigue Syndrome - A very different set of doctors states they treat FM and ME/CFS in a online review system

Recently we looked at the online ratings from about 20 well-known chronic fatigue syndrome and fibromyalgia doctors. Now we're taking a different dive at the online rating system and using the ability to search for doctors using conditions on Healthgrades - one of the larger rating systems.

Many times people with FM and ME/CFS have trouble finding good doctors. Many doctors worry about the time needed to learn how to treat these complex disorders and some simply don't want to treat them....
Read more about this resource...
 

Steve

Well-Known Member
Thanks for the research, Cort. My first thought is that I'm glad there weren't lots of FM resources in some of places if those are the treatments they're using. They don't strike me as " best practices" or evidence-based practices for FM.
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
Thanks for the research, Cort. My first thought is that I'm glad there weren't lots of FM resources in some of places if those are the treatments they're using. They don't strike me as " best practices" or evidence-based practices for FM.
I wonder about that. They did seem a bit off....I wonder if those practices reflect some of the things those practitioners use in general but not necessarily with FM (?).
 

Dee VanDine

Member
Cort submitted a new resource:

Worlds Apart: The Doctors who treat Chronic Fatigue Syndrome - A very different set of doctors states they treat FM and ME/CFS in a online review system



Read more about this resource...
thanks, cort! i was initially diagnosed with CFS 25 years ago. some time later, i was diagnosed with Fibro, so i don't really know which i have. my primary care doc is an internal medicine doctor, but he doesn't do much besides send me to specialist. in the past four months, i've been to eight different doctors. it's as if each symptom has it's own doctor! not ideal for my energy level, my time spent, or my pocket book.
 
I wonder about that. They did seem a bit off....I wonder if those practices reflect some of the things those practitioners use in general but not necessarily with FM (?).
I agree with Steve, that is my reaction too. If you do a bit of research into the techniques, you will find that the long term outcomes are "mixed results" to say the least.
My theory about this is that in the USA, judicial and political adventurism has for a long time been conducting a kind of class warfare against health insurers; the major reason the US health system is so expensive is that far less "rationing" is allowed compared to every other nation's health system.
I doubt that many of the FM "treatments" listed in the article, are offered by any socialized "free" health care system, and I even doubt that the private-sector alternatives in nations with government-provided systems, promote such treatments. Certainly not in New Zealand where I am from.
I suspect that in the US, health insurance providers are forced to be seen to be "providing something" and of course many sufferers of health conditions regard it as their right to get "any treatment that is available, that might work", after paying insurance premiums for years.
Political opponents of US-style health systems and promoters of socialized systems, generally fail to engage with the reality I have just described, as the main reason the US system is so expensive. A system like New Zealand's is not "cheap" but it is cheaper than the USA's, but not because it is "efficient" - it is because health care is extremely rationed, especially when it comes to sufferers of chronic conditions like FM. There is an alternative "private" system in NZ that is not forced by judicial and political adventurism into providing "gold plated healthcare insurance or nothing", and as a rule, expert investigations have revealed that specific operations done in the private sector cost significantly less than the same operations done on the taxpayer's dime in the "free" public sector. However, health insurance is not tax deductible, so those who have it are paying twice - once in taxes, and again in insurance premiums so as to get faster care when they need it. Waiting lists in the "free" public system for life-saving operations, are often long enough for you to be dead by the time your turn comes.
And if your insurance does not cover FM, well neither does the public system, and no Judge or Politician has yet thought of forcing the private insurers to cover such things.
Correct me if I am wrong about the FM treatments we are discussing in the USA - are these done for people paying their own way, or people claiming against insurance?
 

Tamesin

New Member
Hi Cort,
I live in a city, Cleveland, with one of the best doctor/patient ratios in the US. We have two of the top 12 ranked hospitals in the US (according to US News and World Report) and health care is a major industry. I have found your search results to be accurate for here as well, in spite of that.
I have CFS/ME and Fibromyalgia, with CFS/ME being predominant for me. I have seen multiple specialists at both hospital groups here, and multiple doctors in several specialties (Neurology, Immunology, GYN, Rheumatology, Neprhology, Urology, Endocrinology, Genetics, Internal Medicine, Pain Management) at those hospitals as well as other hospital groups here in Cleveland and in other cities (including Mayo) and docs in private practice, and many alternative medicine practitioners in all areas of alt med, all over the country.
What I've found consistently is that all doctors feel that they know something about FM, and most of them know nothing about CFS/ME. In fact, I have found that most of them think FM and CFS/ME are the same thing. Only my immunologist (who is the doc I primarily use, and is in private practice), my internist, and my physical therapist seem to even know that there is a difference. I find that they use the terms interchangeably, and some have said to me, "Aren't they the same thing?". When I speak about my CFS, they respond using the word Fibromyalgia. When I mention exercise and exertion intolerance in CFS, I get a lot of blank looks. I had surgery this summer, and several of my specialists, while I warned them it would take months for me to recover, were shocked that I had not recovered in 6 weeks, and that I am still not recovered to my normal CFS level from it.
I think part of the issue is that there are many more people with Fibromyalgia than CFS, so docs see a lot of it, and are willing to treat it because they see it often. I find that around here, too, there are people being diagnosed with FM that don't have it (my immunologist, internist and physical therapist are all finding that as well, and finding it increasingly frustrating, as they need to rediagnose people with other illnesses, and then get in the middle with patients who are unhappy and confused), so it seems to be a common thing that doctors see, so every doc thinks they know what it is (hence people diagnosing it incorrectly).
I also think that doctors don't want to see CFS patients because there are no drugs that they can give them, so they feel helpless. And a lot of the rheumatologists and neurologists I've seen feel that CFS is not a real diagnosis, since there is no test -- they all believed I was sick, they just weren't willing to accept my diagnosis as CFS, and looked for something else (diagnosed with mitochondrial dysfunction by one, which was good enough for me, since he actually helped me). "CFS is not a real diagnosis," they say.
On finding a CFS specialist, at one of the major hospitals here, their Rheumatology department says that most of their doctors treat CFS, but some expressly say they will not treat CFS patients (those are docs who treated CFS patients for years -- I guess they just got worn out). Even the two doctors I go to who are knowlegable about CFS and accept it and know what it means and is, don't bring me new ideas for treatment -- I bring ideas and research to them (and my opthamologist, whose wife has CFS). Then they share those with their other patients. It's the way of the world with CFS everywhere, I think. I'm blessed to have my immunologist who is there for me, sometimes with weekly calls if I'm going through a crisis, and hour long appointments. I feel blessed for that.
 

Eggcustard

New Member
Hi, I'm in the UK and just wondered if you have any idea if there is a list of practitioners who treat fibro available for over here? I have seen a rheumatologist who sent me to a pin specialist and now Ive been discharged so Im not sure where to go next!

thanks,

PS its great what you are doing and keep up the good work!
 

jsuzor

Member
Hi Cort,
I live in a city, Cleveland, with one of the best doctor/patient ratios in the US. We have two of the top 12 ranked hospitals in the US (according to US News and World Report) and health care is a major industry. I have found your search results to be accurate for here as well, in spite of that.
I have CFS/ME and Fibromyalgia, with CFS/ME being predominant for me. I have seen multiple specialists at both hospital groups here, and multiple doctors in several specialties (Neurology, Immunology, GYN, Rheumatology, Neprhology, Urology, Endocrinology, Genetics, Internal Medicine, Pain Management) at those hospitals as well as other hospital groups here in Cleveland and in other cities (including Mayo) and docs in private practice, and many alternative medicine practitioners in all areas of alt med, all over the country.
What I've found consistently is that all doctors feel that they know something about FM, and most of them know nothing about CFS/ME. In fact, I have found that most of them think FM and CFS/ME are the same thing. Only my immunologist (who is the doc I primarily use, and is in private practice), my internist, and my physical therapist seem to even know that there is a difference. I find that they use the terms interchangeably, and some have said to me, "Aren't they the same thing?". When I speak about my CFS, they respond using the word Fibromyalgia. When I mention exercise and exertion intolerance in CFS, I get a lot of blank looks. I had surgery this summer, and several of my specialists, while I warned them it would take months for me to recover, were shocked that I had not recovered in 6 weeks, and that I am still not recovered to my normal CFS level from it.
I think part of the issue is that there are many more people with Fibromyalgia than CFS, so docs see a lot of it, and are willing to treat it because they see it often. I find that around here, too, there are people being diagnosed with FM that don't have it (my immunologist, internist and physical therapist are all finding that as well, and finding it increasingly frustrating, as they need to rediagnose people with other illnesses, and then get in the middle with patients who are unhappy and confused), so it seems to be a common thing that doctors see, so every doc thinks they know what it is (hence people diagnosing it incorrectly).
I also think that doctors don't want to see CFS patients because there are no drugs that they can give them, so they feel helpless. And a lot of the rheumatologists and neurologists I've seen feel that CFS is not a real diagnosis, since there is no test -- they all believed I was sick, they just weren't willing to accept my diagnosis as CFS, and looked for something else (diagnosed with mitochondrial dysfunction by one, which was good enough for me, since he actually helped me). "CFS is not a real diagnosis," they say.
On finding a CFS specialist, at one of the major hospitals here, their Rheumatology department says that most of their doctors treat CFS, but some expressly say they will not treat CFS patients (those are docs who treated CFS patients for years -- I guess they just got worn out). Even the two doctors I go to who are knowlegable about CFS and accept it and know what it means and is, don't bring me new ideas for treatment -- I bring ideas and research to them (and my opthamologist, whose wife has CFS). Then they share those with their other patients. It's the way of the world with CFS everywhere, I think. I'm blessed to have my immunologist who is there for me, sometimes with weekly calls if I'm going through a crisis, and hour long appointments. I feel blessed for that.
I am wondering if you would be willing to share who treats you in cleveland. I am originally from Toledo. I have family there who could use your referrals. I noticed that Dr. Lerner, a CFS specialist is not on the list of 20 docs. He is in Beverly Hills Mich. Have you heard about him?
 

Merry

Well-Known Member
I am wondering if you would be willing to share who treats you in cleveland. I am originally from Toledo. I have family there who could use your referrals. I noticed that Dr. Lerner, a CFS specialist is not on the list of 20 docs. He is in Beverly Hills Mich. Have you heard about him?
@jsuzor, Dr. Lerner died recently. I asked Tamesin privately for the names of doctors or a doctor in Cleveland, but she couldn't offer any.
 

Merry

Well-Known Member
At Erica Verrillo's Chronic Fatigue Syndrome Treatment Guide website is a list of sources of information about doctors. http://www.cfstreatmentguide.com/doctors-and-clinics.html Most of the sources no longer exist. The ProHealth database, which a couple of months ago was available, is now gone. Devin Starlanyl's list is "404 Not Found." The database page for fmcfsme.com is blank.

The list Co-cure used to provide I haven't been able to find. I thought that the Massachusetts CFIDS/ME & FM Association had a list, but I don't see it.

So I'm getting the idea that accessibility to medical care for people with ME/CFS is worse, not better, than five years ago. Please tell me I'm wrong.
 

jsuzor

Member
At Erica Verrillo's Chronic Fatigue Syndrome Treatment Guide website is a list of sources of information about doctors. http://www.cfstreatmentguide.com/doctors-and-clinics.html Most of the sources no longer exist. The ProHealth database, which a couple of months ago was available, is now gone. Devin Starlanyl's list is "404 Not Found." The database page for fmcfsme.com is blank.

The list Co-cure used to provide I haven't been able to find. I thought that the Massachusetts CFIDS/ME & FM Association had a list, but I don't see it.

So I'm getting the idea that accessibility to medical care for people with ME/CFS is worse, not better, than five years ago. Please tell me I'm wrong.
Thanks for posting the info. for finding docs. Take Care!
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
p.s. One of the links on Erica Verrillo's website is a very good resource for finding docs.
This is the original link that ya gave me from Erica's website....http://www.cfstreatmentguide.com/doctors-and-clinics.html

The fifth link on that original website has the following:
The Doctor Database consists of 7023 doctors in 80 countries worldwide that specialize in helping people with FM and /or CFS/ME: http://fmcfsme.com/doctor_database.php
We have a bunch of databases in our Resource section as well -
http://www.cortjohnson.org/forums/resources/large-databases-for-finding-me-cfs-and-fm-doctors.120/
 

Merry

Well-Known Member
p.s. One of the links on Erica Verrillo's website is a very good resource for finding docs.
This is the original link that ya gave me from Erica's website....http://www.cfstreatmentguide.com/doctors-and-clinics.html

The fifth link on that original website has the following:
The Doctor Database consists of 7023 doctors in 80 countries worldwide that specialize in helping people with FM and /or CFS/ME: http://fmcfsme.com/doctor_database.php
Thanks, @jsuzor. The page doesn't load on the above link. I'll try again later. I should have mentioned in my post which links worked on the cfstreatmentguide.com doctors page.

You are right that the first link, http://www.cfstreatmentguide.com/doctors-and-clinics.html, does bring up a database. For Ohio four choices come up: one's a naturopath, one is a clinic that I've not heard good things about, one is at the other end of the state. The fourth provider is 45 minutes away, and even that distance is too far. On a good day I could probably get there, but I'd be too sick to drive back. Nor is that doctor on the provider list of the insurance plan I will select for 2016. I didn't check the other three, but they probably aren't in-network providers either. The less expensive ACA plans, not surprisingly, offer a limited network of providers.

That I don't have a doctor and haven't had for a long time is not, however, a pressing issue to me except that I am not willing to register to vote in this new county I moved to two months ago until I have a doctor willing to tell the state that I too ill to serve on a jury.

But this problem of mine is a small matter. The big problem -- the outrage -- is that this group of desperately ill patients has so little access to medical care, and access has become more limited in the last five years rather than expanded.
 
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