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Poll The "Do You Believe Your Doctor Takes Your FM and/or ME/CFS Seriously" Poll

Discussion in 'General' started by Cort, Sep 5, 2015.


Do You Believe Your doctor Takes Your Disease Seriously?

  1. I have FM - I believe he/she does take it seriously

    11 vote(s)
  2. I have FM - I believe he/she takes it somewhat seriously

    7 vote(s)
  3. I have FM - I don't believe he/she takes it seriously

    11 vote(s)
  4. I have FM - I don't know.

    0 vote(s)
  5. I have ME/CFS - I believe he/she does take it seriously

    14 vote(s)
  6. I have ME/CFS - I believe he/she takes it somewhat seriously

    18 vote(s)
  7. I have ME/CFS - I don't believe he/she takes it seriously

    23 vote(s)
  8. I have ME/CFS - I don't know.

    1 vote(s)
Multiple votes are allowed.
  1. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    Is your doctor really listening? Really trying?

    Is he/she taking your diagnosis of fibromyalgia or chronic fatigue syndrome seriously?

    Let us know.

    If you're not currently seeing a doctor please refer to the last doctor you saw.
    Last edited: Sep 6, 2015
  2. zenmom

    zenmom Member

    I know for certain that the doctors at Dr Klimas's institute take it seriously. I started seeing them about 3-4 years ago, first Dr Klimas and now Dr Irma Rey (Dr Klimas doesn't see patients directly anymore). I think my general practitioner here at home takes it more or less seriously, but doesn't understand it much and doesn't know how to treat it. I had to find my own way to an out-of-state specialist. (And insurance was no help at all in finding a referral for me.)
    Patty May likes this.
  3. JWest

    JWest Member

    Though my doctor doesn't know much about treating CFS/ME (she is general family practice) she does whatever she can to help patients including trying whatever I bring to her including things like lab tests, prescriptions and a handicap placard application. As long as it's reasonable and safe she helps when she can. I believe she takes it seriously because she has at least 7 or 8 other CFS/ME patients many of whom where in Montoya's original Valcyte study. My suggestion if your doctor doesn't take CFS/ME seriously is to keep looking. You may not find an expert but at least you can find someone who is sympathetic and advocates for the patient and not their ego or the insurance companies.
    Judi and Patty May like this.
  4. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    Good advice!
    Did you have to look for her or did you just get lucky?
  5. JWest

    JWest Member

    I got lucky for the most part. The doctor I originally had when I got sick was very unhelpful and after several years of that I decided I had to find someone else. It just happened that when I checked out the medical group down the street (different from where my fist doctor was at) they said they had a relatively new doctor who was still accepting new patients and so I gave her a try. Even though she has since moved to a different medical group that is about 40 minutes away instead of 4 minutes away I still go see her. I will say it can be hard to find a doctor, at least in the San Francisco Bay Area as all the good ones are not taking new patients or even worse they have gone to consulting and do not take insurance (which is the case with the endocrinologist I see. Thankfully!? the endocrinologist is only $300/hr rather than the $500/hr and up that some "experts" charge).
  6. Vicki

    Vicki Member

    I am lucky enough to have an excellent GP (General Practitioner) who takes me seriously indeed, because he both read about 40 pages of my health/pain diary I gave him, and knew that when I quit my job I must have been really desperate (to give up a secure job when I had no money, savings, assets and over $30,000 of medical debts and monthly rent to pay). He has referred me to a number of specialists, most of whom have been unhelpful for FM/CFS (except for my excellent Cardiologist, Endocrinologist, Neurosurgeon, Orthopaedic specialist etc who are/were treating me for non-FM/CFS related health conditions or surgery).

    My GP has bulk-billed my consultations to Medicare from the early days when I started seeing him about 12 years ago and continues to refer me for path/xrays/scans etc which can be covered by the Govt Medicare system here in Australia (non private labs etc which will put me out-of-pocket). He has an excellent 'bed-side' manner and is always willing to listen to any of my theories, or knowledge on subjects of which he may be lacking.

    He has never said "it's all in my head" and I think his support has been one of the most important aspects of my 'treatment'.

    Finding a supportive primary care physician who is willing to listen and co-ordinate specialist health care is probably just as important as specialists in any particular field of medicine.

    To this day, He, and only He, is truly compassionate and understanding of what is like to live with chronic pain and fatigue and a plethora of other debilitating health conditions.
    Patty May likes this.
  7. Katie

    Katie Active Member

    I think of my doctor being my family practician, who seems to have a hard time understanding/accepting ME/CFS. My specialist at the complex chronic disease clinic certainly believes me
    Vicki likes this.
  8. Vicki

    Vicki Member

    Many medicos (doctors) have a hard time accepting medical conditions which they do not understand, have no training in and lack the experience to treat. It's the arrogance I find so hard to accept.

    Even my own niece, after she qualified as a doctor admitted ME/CFS/FM was hard to diagnose and treat. She is now an Oncologist.

    Why can't people just admit 'they don't know'?
    Katie likes this.
  9. Seeksassy

    Seeksassy Active Member

    I had a great gp who diagnosed my fm the first time I consulted her with my symptoms. But over the years she became so bogged down with a heavy practise that I had to (very teluctantly) change docs as it was too hard to get in to see her. Sometimes it would take up to 3 mo ths to get an approval. I don't always need a doc on short notice but sometimes I do. I was very worried about finding a new doc willing to take on my complex situation (crps, FM, CFS, previous cancer, allergies to many meds, etc). But did I ever luck out! Interviewed a new gp in practise only 1 yr at the time, and never doubted me. Wholeheartedly supported my eventual transition to LTDI with the overwhelming amount of reporting that requires. She definitely has gone above and beyond, at least for Canadian expectations. Made some new referrals for attempt at treating old symptoms and supports my requests for testing and supplementing to the degree that our system allows. Thank you Dr Tiffany Chan, Edmonton AB Canada.
    Patty May likes this.
  10. Erika Edmondstone

    Erika Edmondstone New Member

    I really fell on my feet.... my GP takes ME/CFS seriously and is happy to work with alternative/non-mainstream therapies. And she always listens when something new pops up and we try to figure out of it's part of this illness or something else. She's recently started working with nutritional medicine and said that she's on a learning curve. She looks at information I find and shares references with me so that I can read up on them. We really are working through this together and this has been brilliant.
    Patty May likes this.
  11. ScottTriGuy

    ScottTriGuy Active Member

    My MD (family practice) emits empathy but has done exactly zero to treat my symptoms. She send me to specialists, but resists pursuing any of the research literature around effective treatments I bring. Recently the internal medicine specialist she sent me to told me in no uncertain terms that my problems were psychological. That was harmful.

    She says she's more open to alternative and experimental treatments than most allo docs, but its a fight to get even diagnostic testing done that's not routine. Just this past week I had to call the lab at her hospital to find out if they would run tests for HHV6 and homocysteine - felt like I was doing her job, or the job of the admin. The 15 minutes I have with her is always a rush so that's frustrating.

    In contrast, the naturopath doctors I have seen have been very helpful - mitochondria support supplements, tincture, supporting genetic testing, organic acids testing and I'm not rushed - it is a validating experience. In fact, I'm so grateful for their support I have offered to give their students and staff a free day of motivational interviewing training which will enhance their effectiveness in collaborating with their patients.
  12. carol a perry

    carol a perry Member

    My GP told me that he thought he had one patient who had CFS some time ago but they were cured. Luckily I live near a CFS/ME specialist. His help has made the difference between existing and surviving. It is a fine line, but an important one.
  13. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    It certainly is an important one. Glad you find someone who's helping you keep your head above water....
  14. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    I think there are more and more practitioners out there who are giving this disease a chance.
  15. Snookum96

    Snookum96 Active Member

    Most of the doctors I have seen told me it was controversial or just had no idea what it is.

    When I read the reports after my questions about CFS were generally ignored and they said I had somatoform disorder or it was depression.

    Doctors are jerks. I can't believe I trusted them all my life.

    When I saw a CFS specialist and told him doctors didn't believe me he thought it was ridiculous. "Why would you lie" he said. Good question doc. I almost cried the first time I was taken seriously.
    Patty May and Merry like this.
  16. Cindy T.

    Cindy T. Member

    I just started with a new doctor about a year ago. I expected, but was still puzzled by his obtuse glance at me when I told him I had CFS/ME. Then it occurred to me what I saw from his reaction, and those from other MDs, was they all assume I feel tired all the time, have perused the web, and then on my own have arrived to the idea of CFS. Their conclusion is that I am self-diagnosed. And the standard medical establishment is strongly adverse to patients who suggest any diagnosis. All the other medical notes I've kept in my files show that standard forms MDs use have no block to check off for CFS/ME; just "Chronic Fatigue" which can be due to everything under the sun. Then they run me back through the gamut of standard labs and tests, which they pick through with a fine tune comb to find the reason for my fatigue. Without a real test for CFS/ME, all I have is how my lifestyle has been seriously impacted, and my symptoms. I guess it's not good enough. And on good days, I even question myself.
    Lissa likes this.
  17. Mwasi

    Mwasi Member

    Diagnostic of FM/ME was made in 2011 by Dr. Favreau based in Montreal, a rheumatologist. He is well known here and yes, he is really good. Treatments and medication are well ajusted and the only thing that bog me is that my doctor is....75 years-old! They (rheumatologist) are very few and not young at all so I wonder what will happen when he will disapear. But for now, I know I am a lucky one tto be follow by this doctor and I keep fingers cross that he will live long time :)

    If for example, i have to meet another doctor for other reasons, I can see in their eyes that FM/ME are kind of something "mysterious" or not something serious enough to consider with other medical problems. But for me, I keep naming those as it's important to consider my health context in general.
  18. katvil

    katvil Member

    I live in the southwestern U.S. where it seems that no doctor takes the symptoms of either CFS/ME or fibromyalgia seriously and I am at the end of my rope. After 10 years of various treatments, all of which I had to research and print out for my general practitioner, who at least prescribed most of the meds that I could afford, I am no better.

    Other doctors I've seen insist, as they have for centuries -- proving that we are still living in the Dark Ages -- that my issues are purely psychological, including actual physical/physiological issues that results of blood tests and scans, xrays, etc. show I have.

    Perhaps most "healthcare" providers are illiterate. I am sick and tired of dealing with this by myself and frankly have zero faith in the medical field. I don't want to live the non-life I exist in and I'm tired of people thinking that I would choose to feel like crap -- virtually dead -- all the time.

    I find it impossible to believe that we live in the 2000s because medicine has progressed so little. Before scientists discovered the cause of M.S, did they say those suffering with it were "depressed"? What about those with muscular dystrophy? ALS? Parkinson's? Hell, one doctor prescribes a medication for me that causes my hands to shake and insists the shaking is anxiety. When I don't take the medication, I don't shake. But she doesn't seem to be able to put 2 and 2 together and insists I need tranquilizers.
  19. Pris Campbell

    Pris Campbell New Member

    I see Dr Rey at Klimas who certainly takes it seriously. After searching fir two years to find an internist in my area who would even see me, I saw a yellow pages ad with CFS listed as one of the things this doctor treated. I usually like referrals but at that point, figured what could I lose. I lucked into the gentlest, most helpful and accepting doctor I've bad since childhood. He trained first in India at the top school then came here for residency and internship. He doesn't 'treat' ME/CFS as much as be accepts it and helps me get thriugh the other difficult problems that come with it. He even returns my rare calls personally and calls other doctors in my behalf if they have problems accepting ME /CFS issues. He's a gem.
    Patty May likes this.
  20. Tina

    Tina Well-Known Member

    My original GP took me seriously and ran all the tests she could think of. She got me diagnosed with CFS within four months of becoming ill. She also got me put on Gabapentin within three months to deal with pain and that was a god-send. I attribute this to the fact that she had lupus.

    We are an active duty military family and we moved shortly after that. Dealing with the military medical system is a special kind of hell. I have been waiting for an appointment with a specialist since April. That's right April. Here's how it works....they mail you an appointment date and time, you get no input. The first one was scheduled for a time when I would be out of state. If you can't make the appointment you go back in the que to receive another appointment. I just received my appointment date and time and guess what, my husband has to be out of town for said military and they scheduled right at the time that both of my kids get out of school at two different schools. I cannot make it.

    My current GP is kind and I think she believes CFS is a real illness but she is not willing to try much outside of the box. (Although I am about to try Provigil)) At this point I pretty much except that is as good as I can hope for. The answers are not there and I can respect a doctor willing to say that. Although it would be wonderful to have a doctor who would try to use some of the things that have been shown to work for some people. I never know if the line is drawn because she feels uncomfortable or because of legal issues.

    I would say of the of all the specialists I have seen (a dozen or so) it is 30/70. 30% think it exists but the answers are not there and 70% don't believe it really exists.