1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Time Change Equals Jet Lag, ME/CFS Style
Jody Smith marvels at how much difference one hour can make to those with ME/CFS, as much of the world has endured The Time Change in recent weeks ...
Discuss the article on the Forums.

Medical Accountability?

Discussion in 'ME/CFS Doctors' started by Goodness to M.E., Jun 20, 2013.

  1. Goodness to M.E.

    Goodness to M.E.

    Messages:
    35
    Likes:
    53
    Adelaide
    Yesterday after a MRI, I got my results, I dont have dementia! Yah!!!

    Although I advised this Dr I was diagnosed with M.E. in November 2012 using the new ICC for M.E. He still wrote a report to my GP advising my 'fatigue' (I dont have fatigue issues as such) and suggested I be treated with GET, CBT and anti-depressants!

    I advised him his treatment is 20 years outdated and can cause further disablement to suffers if undertaken and that M.E. in not a mental health illness and I have 2 reports from 2008 to current that state I dont have any signs of mental health unwellness. Although I gave him a 'folder' on a range of M.E. information, he was not interested.

    Sometimes I think it is time to start writing to the AMA and report this medical abuse and ignorance, how do other M.E. people in Australia access and receive appropriate medical treatment? or are some states worse than others?
    CFSNZ, Sasha, SanDiego#1 and 6 others like this.
  2. alex3619

    alex3619 Senior Member

    Messages:
    5,970
    Likes:
    7,839
    Logan, Queensland, Australia
    It is indeed time to report doctors who advise this. If we all complained, every time we heard this nonsense, pretty soon the message would be understood even if not accepted. The next time I hear this nonsense I intend to file a formal complaint. However its not that likely to happen as I don't see average docs very often.
    SanDiego#1, golden and Valentijn like this.
  3. ukxmrv

    ukxmrv Senior Member

    Messages:
    3,123
    Likes:
    1,362
    London
    I don't have the physical health or functioning to be able to lodge a formal complaint to any of the mistreatment I have had recently. My list of desirable "things to do" is higher than I can do. Must concentrate on the top of that list or shortly I won't be able to use the computer as my eye sight is playing up.

    That's not a cop out. I've written letters of complaint before. I've got 2 I have been working on this year. Will do again.

    My deepest thanks to everyone who does complain.
    SanDiego#1, Sasha, golden and 2 others like this.
  4. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

    Messages:
    1,893
    Likes:
    1,236
    Midwest, USA
    I think this is why doctors are able to get away with all of the misconduct that they do. It is not just ME patients that do not have the time and energy for formal complaints.
    WillowJ, Sasha and golden like this.
  5. golden

    golden Senior Member

    Messages:
    1,282
    Likes:
    637
    Clear Light
    Its why I feel privately recording consultations is important.

    But also , this needs removing from your medical record as its false . It can cause problems down the line .

    There should be templates for this as its so common.
    SanDiego#1 likes this.
  6. SanDiego#1

    SanDiego#1 SanDiego#1

    Messages:
    273
    Likes:
    81
    SouthEast USA
  7. SanDiego#1

    SanDiego#1 SanDiego#1

    Messages:
    273
    Likes:
    81
    SouthEast USA

    When you have the POLICE- POLICING THE POLICE-YOU NEVER GET JUSTICE. JUST COVER-UP!!!!!!!!
    It is the same in Dentistry, and Vets.

    San Diego#1
  8. alex3619

    alex3619 Senior Member

    Messages:
    5,970
    Likes:
    7,839
    Logan, Queensland, Australia
    Yes, there is a basic problem with principles of governance in medicine, including transparency, accountability and separation of powers. That has to change for medicine to really advance, and I am writing a blog on this.
    CFSNZ and SanDiego#1 like this.
  9. alex3619

    alex3619 Senior Member

    Messages:
    5,970
    Likes:
    7,839
    Logan, Queensland, Australia
    This is part of the issue. We are way too sick generally to get involved in stressful things. The other two issues are about the messages we receive. First, we worry we would be considered a medical troublemaker. How do we get treatment if doctors avoid us? What happens if its called harrassment? (This is a claim made by UK and Dutch docs.) What if we say the wrong thing publically and get sued?

    Second, they sow a seed of doubt. We doubt our own experience, we doubt we will be believed, we doubt it will do any good. The docs are the experts, who are we to disagree? Some in the UK medical profession take this further: people who complain are fanatics and mentally unbalanced. Why would we want to be subject to such stigma?

    Yet (probably) nothing changes if we don't make it change. For those of us with the energy its worth doing, particularly if through established formal channels.
    WillowJ and SanDiego#1 like this.
  10. SanDiego#1

    SanDiego#1 SanDiego#1

    Messages:
    273
    Likes:
    81
    SouthEast USA

    One interesting thing that have noticed lately is no one will give you a definitive diagnosis in Conventional
    Medicine. The Alternative Dr will at least make an effort to help you. I have an Environmental MD, Chiro and they plus
    what I got from former CFID Dr. are helping. Mostly Environmental. The minute they see CFIDs on a chart they tune you out. I am going to try not even putting it on my chart in the beginning to see if they take me seriously. I am a State Licensed Animal Rescuer and I deal with Vets all the time. They in some practices have combined Alternative with Gen Medical
    treatment. It works.! I have sued 2 Vets over care of 2 rescues and one of my own dogs. One was a University and surgeon. They knocked off $6000.00 in Vet bill as my dog had a bleeding disorder and they did not read the report before surgery. His lungs filled up with blood and he almost died. This is important in our case as you just have to dig your heels in and fight. My Vet told me to leave it alone that my suing would not make a difference. It never went to court. I know we are all sick -but maybe collectively we can improve things..
    Most of us are fighting to stay alive and productive.This was 3 years ago. Don't know whether I could do it now.

    San Diego#1
    alex3619 likes this.
  11. Kina

    Kina Moderation Team Lead

    Messages:
    4,361
    Likes:
    2,384
    Ontario, Canada
    I have complained about a few doctors in my time not to College of Physicians and Surgeons of Ontario but to the hospital admins that the doctors worked for. It's best to arm yourself with the Professional Standards that doctors must adhere to in your general area and any other standards (in one case, it was discrimination so I included a human rights complaint). A breach of professional standards is a serious thing, human rights breaches are even more serious. I shockingly enough was heard and some changes were instituted at the hospital in question.

    I have never complained directly to the College of Physicians and Surgeons which is just a bunch of doctors policing themselves with a few lay people thrown in for good measure. It involves lawyers and long drawn out procedures and most complaints don't get past the front door. Only serious cases of physical or abuse, serious medication errors or death caused directly by a doctor seem to make it to being heard. Even then, they don't seem to revoke or suspend licences very often. It's quite disappointing.

    Registered Nurses have a professional body in Ontario and all complaints are seriously reviewed and Nurses get their licences suspended or revoked for things that the Ontario College of Physicians and Surgeons wouldn't even consider.

    Doctors should not be policing themselves and all complaints should be heard.
  12. WillowJ

    WillowJ Senior Member

    Messages:
    2,604
    Likes:
    1,736
    WA, USA
    I have complained to the hospital at least twice for different issues (one of which was not ME-related) and got exactly nowhere. It was very disheartening. However that was in an HMO situation which may be less likely to heed a complaint.
  13. alex3619

    alex3619 Senior Member

    Messages:
    5,970
    Likes:
    7,839
    Logan, Queensland, Australia
    I know there is a huge issue with doctors checking into medical misconduct. This is something I am thinking about. What we need is a register of successful and failed complaints. We complain, we log the complaint, then over time we publish updates - summary results so as not to potentially invoke libel laws.

    We publish and make the organization know that 21 complaints were ignored, or 45, etc., and update them from time to time. Further we publicize the reasons the complaints were justified, but remove mention of specific doctors.

    These are just some ideas, I am still thinking about this.
    WillowJ and Kina like this.
  14. alex3619

    alex3619 Senior Member

    Messages:
    5,970
    Likes:
    7,839
    Logan, Queensland, Australia
    http://calumslist.org/ This is the kind of thing we need to do. I think it might be closing down though as its not being used for the purpose it was created, and creating lots of controversy, but the idea is viable. However we should use aggregate data, not individual names, though the body that was complained to has to be named.
  15. SanDiego#1

    SanDiego#1 SanDiego#1

    Messages:
    273
    Likes:
    81
    SouthEast USA
    Kina- Great Post. Something else that has worked for me is to find out who is in charge of facility, What Administrator,
    What Doctor. Send a Registered letter to that person. Documenting everything that happened -IN DETAIL!!
    Particularly if the charge or service was not correct or neglect was involved. I have done this with several hospitals , Emergency rooms . Things did improve. Perhaps because more than one person complained. I have also written letters to newspapers naming the hospital and what happened. They do not want the bad publicity.
    With all the Media outlets we have now, the last thing most of the Medical Professionals want is a Negative letter.
    I have not had any backlash from it as long as you stick with the subject and no name calling. Just stating the facts and describe the event.I would try the letter to the Person in charge first. And have all of your FACTS STRAIGHT.

    Best
    San Diego #1
    Kina likes this.
  16. daisybell

    daisybell

    Messages:
    39
    Likes:
    61
    New Zealand
    Earlier this week, the endocrinologist who I saw regarding my Graves Disease told me categorically that CFS is psychological. I wanted to discuss with him the fact that I had felt much better when I was slightly hyperthyroid but he wasn't even prepared to discuss it. I had gone in to the appointment determined to keep my cool, but that went out the window!
  17. Goodness to M.E.

    Goodness to M.E.

    Messages:
    35
    Likes:
    53
    Adelaide
    So sorry to hear this daisybell, I've gotten to the stage where I cant be bothered with doctors anymore, they just want a quick-fix for them and this is to be achieved in a 10 minute consult and to feel good about their level of service, accompanied by a script for guess what...... anti-depressants .......the 21 century cure for everything these days!

    The below info is why I think doctors today cant be bothered seeking a cause because writing a script is more cost effective for them?!?!?!


    BMJ
    Helping doctors make better decisions
    Tiredness

    The myth of Chronic Fatigue Syndrome
    9 June 2007
    It pains me to see the concept of Chronic Fatigue Syndrome (CFS) promoted by individuals and organizations alike, including a prestigious US Government Agency such as CDC (Center for Disease Control). I do not recall using CFS as a diagnosis. The reason is simple, I go beyond the CDC criteria in investigating chronic fatigue. In their 10-minute consultation "Tiredness", Drs Moncrieff and Fletcher jump to a speedy conclusion that the patient under discussion has depression. That is exactly what patients dislike about our diagnostic acumen, attributing major symptoms in their life to mental diseases without first exhausting all the underlying physical ailments.
    I have yet to see a diagnostic criteria list for fatigue that is complete. This unfortunately includes the diagnostic criteria for Chronic Fatigue Syndrome issued by CDC. No wonder we keep citing CFS as a cause for fatigue when we ourselves fail to pinpoint the diagnosis. In my endocrine practice after ruling out the obvious causes of fatigue (mentioned in this 10-minute consultation, I will also add adrenal insufficiency which is an autoimmune disease not mentioned by name in the mini consultation), I will do the following tests and I almost always find the cause for fatigue: 1. True biological reference range of TSH should be 0.3-2.5. If TSH is > 2.5, especially when Thyroid Peroxidase titer is > 10, the patient might have evolving hypothyroidism. If you go by your laboratory's reference range of 0.5-5, of course you will miss the boat, and resort to the waste basket diagnosis of CFS.
    2. Check glucose tolerance test on people who are obese, have family history of diabetes, and have nocturia, or polyuria. The fasting plasma glucose should be <100 mg/dl (5.5 mmol/l).Postprandial plasma glucose should be <140 mg/dl (7.7 mmol/l)at 30-minute, 60-minute, 90-minute, and 120-minute. If you do not use these diagnostic thresholds, you will miss the diagnosis of diabetes, or impaired fasting glucose, or impaired glucose tolerance. The latter 2 are also called pre-diabetes. Pre-diabetes and diabetes both can cause severe fatigue if remained undiagnosed. The mechanism is through loss of glucose (body's fuel) in the urine (Glycosuria>
    Check vitamin B12 level. The cutoff reference range is >300 pg/mL (>221 pmol/L), or even higher. Most laboratories in the US have the reference range at 160 or 180, erroneously low. If in doubt, check homocysteine level, the reference range of homocysteine should be between 5 and 15 µmol/L (some authorities use 10 as cutoff). If you rely on outdated reference range, you miss the boat and fall in the trap of CFS.
    3. In the Northern regions of the United States and Europe, vitamin D deficiency is rampant. In some cities in the United States 70% of the population in the winter might have vitamin D deficiency (such as Boston). Vitamin D deficiency is responsible for calcium and phosphorus absorption (among other host of other functions). Lack of phosphorus means lack of ATP in the body, which means that you feel tired. I have helped thousands of victims of this type of chronic fatigue through vigorous vitamin D supplementation. Not to mention that vitamin D deficiency causes also severe myalgia and bone pains (osteomalacia), often missed since vitamin D deficiency is not on the list of differential diagnosis of fatigue, including (tragically) the CDC list. Failure to recognize vitamin D deficiency leads you to misdiagnosing patients as CFS and/ or fibromyalgia. Nearly 70% of patients with fibromyalgia have vitamin D deficiency, i.e. misdiagnosed. The true reference range of 25 hydroxy vitamin D is 32-100 ng/ml.
    4. Sleep deprivation is a very common cause of fatigue. This was mentioned in the 10-minute consult.
    5. Celiac disease is relatively common (~1% of Caucasians have it, most of them undiagnosed). If you don't think of Celiac, you will be an easy victim in the trap of CFS. Celiac can cause pan-malabsorption of iron, vitamin D, B12 (mentioned above) in addition to other nutrients and minerals.
    6. If iron saturation is high, perform genetic testing for hemochromatosis. This is another relatively common genetic disease in the Caucasians.
    Any list that does not address the above diagnoses (with the reference ranges that I mentioned), would lead to missing the root causes of fatigue. CFS is not a diagnosis; it is merely re-labeling fatigue with a fancier name. It is the time that CDC revisited the criteria of CFS, and included the causes I cited above. I can say with confidence, backed up with data of hundreds, or even thousands of patients with fatigue who I have helped over years, that patients with chronic fatigue syndrome are patients who have not been adequately worked up in accordance with the criteria mentioned above. It is for this reason that CFS is not in my medical vocabulary.
    Competing interests: None declared
    Competing interests: None declared
    Shirwan A. Mirza, MD, FACP, FACE, Pivate Ptactice
    None
    Auburn, NY 13021 USA

    BMJ Group
    Privacy and Cookie Policy Website T & Cs Revenue Sources HighWire Press Feedback Help
    © 2013 BMJ Publishing Group Ltd
    peggy-sue, SanDiego#1 and golden like this.
  18. daisybell

    daisybell

    Messages:
    39
    Likes:
    61
    New Zealand
    Sometimes I would just like to give the doctors and the people who have all the answers (exercise a bit more every day etc etc), CFS for a month or two! Just to give them a glimpse of how it feels day in day out.
    I have found one positive though- as someone who works in the health sector I now have a much better understanding of my patients with fatigue. Never again will I think "you just need to try harder" when a patient tells me they have fatigue or feel overwhelmed.
    I'm glad to have found this forum - it's great to read and feel validated and also inspired to keep positive. Thanks to you all.
  19. golden

    golden Senior Member

    Messages:
    1,282
    Likes:
    637
    Clear Light
    Hi

    Feeling annoid that doctors are still abusing patients by stating CFS is psychological.

    This got me thinking : what is the official stance of the M.E. charities?



    If a Doctor was to say to you , your Cancer , your MS is psychological - the abuse being endured becomes clearer.

    But where is the information ?

    Is it advisable for example in the UK to print out your reference and guide on proper physical testing testings to put into my medical notes? my TSH was around 7 for example and nothing gets done. I have never been tested for celiac and yet completely cutting gluten has helped considerably and removee some bothersome symptoms.

    Should i put this in my notes ? should i go to the patients association ?

    Do they have a complaints procedure to follow
    Sasha and SanDiego#1 like this.
  20. SanDiego#1

    SanDiego#1 SanDiego#1

    Messages:
    273
    Likes:
    81
    SouthEast USA
    Good Post- However from 2007. Many changes on treatment. Just few Dr to treat us. Will not recognized new treatments or new diag without $15,000.00 in hand. First thing my Environmental Dr. did -contrary to CFIDS Dr. was to ck my thyroid and adrenals. They neither one were working. Put me on supplements for both and I am slowly getting better. These were compound. Environmental Dr. is Susan Tanner MD in Atlanta,Ga.. Takes insurance and files it. Also on CPAC machine.

    Best,

    San Diego #1

See more popular forum discussions.

Share This Page