Poll How Well Informed Was the Last Doctor You Saw?

How well informed was the last doctor you saw

  • ME/CFS or FM Expert - very well informed

    Votes: 6 10.7%
  • Very well informed

    Votes: 2 3.6%
  • Fairly well informed

    Votes: 6 10.7%
  • Not very well informed

    Votes: 17 30.4%
  • Pretty much brain-dead on the subject

    Votes: 25 44.6%

  • Total voters
    56

Cort

Founder of Health Rising and Phoenix Rising
Staff member
Baffled-doctor.jpg

This is kind of a quick look at how informed the doctors you see are about ME/CFS or FM. It asks how well informed was the last doctor you saw for ME/CFS/FM or for a symptom associated with ME/CFS/FM?

For a quick bonus say what kind of doctor you saw - primary care, specialist rheumatologist, neurologist), alternative health (acupuncture, etc.)????
  • Also please consider adding your doctor to our Doctor Review section and reviewing them to help others find good doctors (and stay away from bad ones).
 
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My current primary care doc (seen him twice now) thinks chronic fatigue only a symptom of fibro and that fibro can be fixed with "diet, exercise, and treating the depression." Ummm, depression? I was assured that all people with fibro are depressed. *sigh*

He thought, given my symptoms, I might have mitochondrial disease but was unimpressed and totally dropped the subject when I pointed out that research shows conclusively that ME/Chronic Fatigue is in fact a mitochondrial disease.

I went to him hoping to get my Low Dose Naltrexone script renewed (the doc who prescribed it left the practice) but he never heard of LDN, doesn't think it should affect fibro, and might be causing or covering the cause of all my symptoms. I don't think he's gonna renew the script. Damn.
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
My current primary care doc (seen him twice now) thinks chronic fatigue only a symptom of fibro and that fibro can be fixed with "diet, exercise, and treating the depression." Ummm, depression? I was assured that all people with fibro are depressed. *sigh*

He thought, given my symptoms, I might have mitochondrial disease but was unimpressed and totally dropped the subject when I pointed out that research shows conclusively that ME/Chronic Fatigue is in fact a mitochondrial disease.

I went to him hoping to get my Low Dose Naltrexone script renewed (the doc who prescribed it left the practice) but he never heard of LDN, doesn't think it should affect fibro, and might be causing or covering the cause of all my symptoms. I don't think he's gonna renew the script. Damn.
Darn! He's definitely not the answer...
 

julie dawn

New Member
my pain doc....treats me because i have degenerative scoliosis anong other painful things....rhuematologist...knew nothing, doesn't treat it, will treat fibro....G.P......changed the subject...if you know of a good dr. in the Mobile ,AL area please reply..i was diagnosed with 21 out of 22 then criteria at IU med center in IN....in the 1990's...haven't had a good dr. since i moved in'97....it's humiliating and horrible to keep trying to find a dr who cares. on medicare for deppression and agorophobia....up for reevaluation soon,,,,too poor , too sick,,,way tired
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
my pain doc....treats me because i have degenerative scoliosis anong other painful things....rhuematologist...knew nothing, doesn't treat it, will treat fibro....G.P......changed the subject...if you know of a good dr. in the Mobile ,AL area please reply..i was diagnosed with 21 out of 22 then criteria at IU med center in IN....in the 1990's...haven't had a good dr. since i moved in'97....it's humiliating and horrible to keep trying to find a dr who cares. on medicare for deppression and agorophobia....up for reevaluation soon,,,,too poor , too sick,,,way tired
my pain doc....treats me because i have degenerative scoliosis anong other painful things....rhuematologist...knew nothing, doesn't treat it, will treat fibro....G.P......changed the subject...if you know of a good dr. in the Mobile ,AL area please reply..i was diagnosed with 21 out of 22 then criteria at IU med center in IN....in the 1990's...haven't had a good dr. since i moved in'97....it's humiliating and horrible to keep trying to find a dr who cares. on medicare for deppression and agorophobia....up for reevaluation soon,,,,too poor , too sick,,,way tired
Sorry to hear that Julie. Prohealth has a list of doctors on their site. I wonder if they have anyone from your region?
 

Bottsie

Member
My PCP told me straight-out that he did not believe in Chronic Fatigue Syndrome. I am a forced-to-retire elementary teacher, and I have cracked tougher nuts than him. With dogged persistence, I continued my research and would enlighten him a little every visit. I finally decided to approach him about a referral to either Dr. Lapp at Hunter-Hopkins in Charlotte (fairly close) or with Dr. Montoya at Stanford. Since he had never heard of Dr. Lapp or Hunter-Hopkins, that was out. Only Dr. Montoya's affiliation with Stanford lent enough credibility for a referral. But that also meant a cross-country trip for me. Two years into a four-year waiting list, I got The Call. One appointment later, along with several e-mails and phone calls, I have tried acyclovir with a brief remission, and am now on valacyclovir and low-dose naltrexone...waiting to see what might happen. My PCP is coming around and more open to the information I bring to his attention.
 

tatt

Well-Known Member
I live in the UK - so even the so called ME specialists know precious little about ME. They really only help if you need to claim benefit payments or if you want to do CT/GET. Hence I have seen an ME specialist once, when I needed some tests my gp should have done but didn't. My gp refused me a prescription for low dose naltrexone as it's only available here on a named patient basis and he says he can't do a private prescription for his NHS patients. I've seen a consultant about (intermittent) atypical pain fairly recently and he is genuinely trying to help but doesnt think there is much he can do.

They keep trying to tell me I must be depressed - well seeing doctors is depressing but the rest of the time I do pretty well. So it's trial and error on the supplements and see if I can buy naltexone next time I'm on holiday, with all the risks of fake drugs that entails. I did try the LDN website and one of the links there for private doctors but got no response, unless it was spam emails.
 

LondonPots

Active Member
I'm in UK, and as Tatt says, they're wholly clueless on this. I don't bother with them any more. The nearest I've got to knowledge in a doctor is a private one, but even he wasn't interested when I said 'CFS/ME, Stanford Uni latest findings, brain inflammation etc' - he just blocked it, didn't want to hear. Which just switched me off him, I must say. Oh, and a nurse recently told me I shouldn't get health info from the internet because 'it's not regulated' - which is super-super-hilarious given the NHS ignorance.
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
My PCP told me straight-out that he did not believe in Chronic Fatigue Syndrome. I am a forced-to-retire elementary teacher, and I have cracked tougher nuts than him. With dogged persistence, I continued my research and would enlighten him a little every visit. I finally decided to approach him about a referral to either Dr. Lapp at Hunter-Hopkins in Charlotte (fairly close) or with Dr. Montoya at Stanford. Since he had never heard of Dr. Lapp or Hunter-Hopkins, that was out. Only Dr. Montoya's affiliation with Stanford lent enough credibility for a referral. But that also meant a cross-country trip for me. Two years into a four-year waiting list, I got The Call. One appointment later, along with several e-mails and phone calls, I have tried acyclovir with a brief remission, and am now on valacyclovir and low-dose naltrexone...waiting to see what might happen. My PCP is coming around and more open to the information I bring to his attention.
What a long waiting list! It's great to have somebody at Stanford. That clearly opens doors. congratulations on persevering with your PCP...Good luck with the antivirals and LDN....
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
I'm in UK, and as Tatt says, they're wholly clueless on this. I don't bother with them any more. The nearest I've got to knowledge in a doctor is a private one, but even he wasn't interested when I said 'CFS/ME, Stanford Uni latest findings, brain inflammation etc' - he just blocked it, didn't want to hear. Which just switched me off him, I must say. Oh, and a nurse recently told me I shouldn't get health info from the internet because 'it's not regulated' - which is super-super-hilarious given the NHS ignorance.
You guys in the UK - it's really rough!
 

Freda

New Member
Neurologist said he didn't know that he believed in ME. Rheumatologist said ME is caused by overprotective emotionally involved mothers. Geriatrician said its a mental health disorder caused by the stress of splitting with your boyfriend, even though the split was amicable and 8 months after ill onset.
GP's You're - stressed and sleeping with your mouth open; stressed; depressed; menopausal; you just think you are ill because someone else in your family is ill; psychologist you shouldn't be using the internet to manage your health you need to see a ME/CFS expert.
Endocrinologist - read the Canadian Consensus Criteria (CCC) provided and diagnosed CFS as per the Guidelines.
Now guess which medical professional has a father with ME/CFS??
 
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Linda B

Active Member
Hi from Australia,
I recently discovered that my daughters Primary care doc follows this site. Yeh! ...OR SO ONE WOULD THINK. The doc rarely comes up with suggestions for any kind of direction but mostly it is me driving him to write scripts or request tests to hopefully advance the cause. He seems happy enough to take my $85 per visit and just get an update on how she is. An expensive chat for me. Grrrrr! He did not even realise the site name had changed from Phoenix Rising....so, how well does he keep up!! Holding my daughter on a fine line after 6years but would dearly love to move in the right direction. At 19 she has a long road ahead.
Linda
 

Simone

Member
I'm in Australia. My GP of more than 10 years is incredibly supportive and believes that ME/CFS is a real disease, but she doesn't think that conventional medicine has much to offer (she's pro-TCM, which suits me as I've been using TCM for other conditions for years, and it has helped my ME/CFS, but is not curative). She's not very knowledgeable about it (when I was finally diagnosed with POTS, she thought it was unusual for someone with ME/CFS to also have POTS).
I was referred to a specialist with an interest in ME/CFS as well as another condition I have, who told me that I was depressed, needed to eat less and exercise more and probably had sleep apnoea (despite any evidence to suggest so). So, the usual nonsense. Needless to say, no further appointments with her.
Recently, I started seeing an integrative medicine doctor who specialises in ME/CFS... very knowledgeable. Time will tell whether she is sufficiently tuned in to the particular quirks of my body to make a difference...
 

Linda B

Active Member
I'm in Australia. My GP of more than 10 years is incredibly supportive and believes that ME/CFS is a real disease, but she doesn't think that conventional medicine has much to offer (she's pro-TCM, which suits me as I've been using TCM for other conditions for years, and it has helped my ME/CFS, but is not curative). She's not very knowledgeable about it (when I was finally diagnosed with POTS, she thought it was unusual for someone with ME/CFS to also have POTS).
I was referred to a specialist with an interest in ME/CFS as well as another condition I have, who told me that I was depressed, needed to eat less and exercise more and probably had sleep apnoea (despite any evidence to suggest so). So, the usual nonsense. Needless to say, no further appointments with her.
Recently, I started seeing an integrative medicine doctor who specialises in ME/CFS... very knowledgeable. Time will tell whether she is sufficiently tuned in to the particular quirks of my body to make a difference...
Hi Simone,
I am not sure what TCM is? Or I just can't recall if I have heard it. Could you elaborate? and also it would be great to hear how you feel it helped your CFS. Our doctor has no problem accepting CFS as a real issue. It's just perhaps too hard for him to recommend any particular pathway. Lots of supplements that my daughter has been taking for a long time (we mix those around a bit), usually get reviewed only when I request that he review her regimen of supplements. Surely they cannot be good for her ad infinitum! Am considering trying to find another doctor but also face the fear of my daughter trialling yet another thing so it rally is a double edged sword. I think that is what keeps me from jumping ship too often or too soon. I worry about each new attempt to elicit a response. Sometimes these events do not go so well.
Cheers. Linda.
 

Zapped

Well-Known Member
After running the gamut of GP's in the local area with almost nil CFS knowledge (nor interests) I picked a neurologist
(with multiple med degrees) near a major hospital/doctor complex . I had prepared a tome of point-making research for him to review at his leisure, for the purpose of thoroughly informing him of my condition(s) and to establish credibility for my requests.

The long and short of the visit was that he had never seen anyone with CFS but that he had heard of it! He gave me
a script for a spinal tap and other test workups. I left but didn't follow through with his pioneering efforts.

Frustrated again, I paid upfront at a VIP concierge practice, and ended up with little more than costly lip service and basic tests. I did get my requested scripts filled for a year but did not renew for more wasted time and energy.

In searching out yet another candidate PCP (as yet without success) I came across the above neurologist. He is now listed as an ME/CFS specialist! Now, about my cynicism... .
 

zenmom

Member
Since I've been a patient of Dr Klimas's Neuroimmune Institute at NSU for the last several years, I've seen Dr Klimas and then more recently Dr Irma Rey, both of whom are expert with this illness. (Unfortunately my most recent blood tests show inflammation markers way high, but at least they know what to look for.) I have to say that of the general practitioners I've seen in the past 10-15 years, none of them has known much about CFS. After I started educating myself, then I usually turned out to know more than the GP about it. That's why I decided to go straight to an expert. I had had mixed results from the Fibro & Fatigue Center doctors I'd seen, so that sort of "expert" didn't necessarily help. More research. Decided on Dr Klimas because she seemed to be active in research and collaborations at a high level, and decided that the travel and expense was worth it. I've been lucky that I've been able to so far afford the trips to Florida once a year, and for me it was the right decision.
 

Strike me lucky

Well-Known Member
In australia even if your gp is well informed on cfs/me, they are restricted by the health department on amount of testing and what types. Some medications such as antivirals are not covered by PBS so have to be bought on a private prescription which increases the cost greatly. If a gp is seen to be doing too much testing they are warned to back off by the health system mostly due to cost.

With viral testing, we just cant get titres measured so just igm or igg. If u test positive igm to a virus they say oh you have a recent infection you will get over, just rest up. if you test igg to a virus then they say oh thats just an old infection, nothing to worry about, even though you may still have viral symptoms. I think there may be some politics in not giving titre levels because they would find many with high titres, meaning viral reactivation and would have to treat with appropriate antivirals, which are expensive long term compared to many other types of treatments.

Lyme and other bacterial infections are the same as the above scenario as viral infections. Long term treatment with antibiotics or treatment with stronger IV antibiotics is expensive. they just dont want to pay the money. Drs that are seem prescribing abx in a way like they are treating lyme etc are given a warning and harshly dealt with.

I think the govt realize that alot of people in australia have chronic illnesses like cfs/me and lyme and are just counting the cost of treatment, which they dont want to spend. Theres no real thought into pain and suffering. If they were really concerned about the economy etc then they would actually help pay for these treatments and do proper testing. Effective treatments would get many people functioning better and able to work, so they are self sufficient and paying taxes.

So i think many dr's just toe the line on what the health department/govt say and the other drs who do understand cfs/me are just very restricted in what they can do. Atleast here in australia a good doctor can atleast help treat you symptomatically for pain and sleep problems and help rule out other illnesses, which seems alot more then what people are getting in the UK.

I think it will probably stay like this until there is a definitive way to test one, which would include actual biomarkers such as nk function and cytokine testing and similar testing.
 

Who Me?

Well-Known Member
@Linda B Cort Johnson, who started Phoenix Rising, ( which is still alive and kicking), recently got this forum going. So 2 separate forums.

Many of us have to tell our docs what to do. If yours does it that's a plus. Many can't get anything.
 

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