Professor & patients' paper on the solvable biological challenge of ME/CFS: reader-friendly version
Simon McGrath provides a patient-friendly version of a peer-reviewed paper which highlights some of the most promising biomedical research on ME/CFS ...
Discuss the article on the Forums.

Filing a complaint against my local hospital. Are all my complaints justified?

Discussion in 'General ME/CFS Discussion' started by andrie, Jan 26, 2016.

  1. andrie

    andrie

    Messages:
    21
    Likes:
    17
    Long story short, I got a very poor treatment from my local hospital after I got ME/CFS. They didn't give me a diagnosis, didn't give me any information about the disease, no treatment plan or nothing. They also accused me of being a hypochondriac, depressed or bipolar. Even though I was very healthy, well adjusted and successful prior the illness.

    I then eventually had to go abroad to get a diagnosis. I went and saw Dr. Lerner and Dr. Meirleir which both gave me a ME diagnosis and wanted to treat me. Lerner wanted to give me anti virals, which I then asked my doctor whether he thought it would be a good idea. He then accused Dr. Lerner of being a fraud because I had no active viral IgM values. But Lerner said that I had a latent Cytomegalovirus infection, thus anti-virals were justified. I also begged the hospital to do a 24 hour cortisol panel to explain why my energy and sleep quality went down the tubes when I first got sick. They never did it and then when I had the test done abroad I had severe adrenal fatigue.

    So yeah, that's really just scratching the surface. So here's what my complaints main points are:


    • They didn't give me a diagnosis. No education what was going on with me or any type of treatment for ME/CFS. All they did was offer sleeping pills and SSRI's.
    • They didn't do a proper cortisol panel when there was obviously a problem.
    • They called Dr. Lerner a fraud and the fact that he was prescribing antivirals when there was no IgM in my blood was quackery.
    • Made me take memory tests for people who've had brain damage to prove that my cognitive issues 'weren't real'.
    • Refused to do a SPECT scan after my MRI came out normal.

    So yeah, basically I'm filing a malpractice complaint. I'm mostly wondering if all these points are justifiable as malpractice. Is Lerner right by prescribing antivirals when there are no IgM values (even though I had concrete proof that I got ill after a viral infection) and would it have been logical to do a SPECT scan to prove that I was having severe cognitive issues?
     
  2. ukxmrv

    ukxmrv Senior Member

    Messages:
    4,324
    Likes:
    4,359
    London
    Where do you live (i.e. country)?
     
  3. Sea

    Sea Senior Member

    Messages:
    1,268
    Likes:
    2,650
    NSW Australia
    I think you will find the treatment you've been offered by Dr Lerner and Dr Meirleir are outside the mainstream recommendations even if they are correct. I doubt that the hospital has done anything 'wrong' that they could be held accountable for. That won't change until the diagnostic and treament guidelines for this illness change.

    Also, a SPECT scan is still a research tool I think rather than validated to use for clinical purposes.
     
  4. minkeygirl

    minkeygirl But I Look So Good.

    Messages:
    4,678
    Likes:
    4,647
    Left Coast
    You can be angry but I don't think you'll get too far. Mainstream medicine just does not have the tools or knowledge to treat us. Expecting that they will is kind of "I don't know the word I want", nutty? Did you go to the hospital hoping they could dx you?

    It might just be better to walk away and use your energy elsewhere. There is no diagnostic code, no test, no markers. Dr Lerner is not around to support you and his (and many other's theory about IgG being important) is not accepted by mainstream medicine. So how are you going to prove malpractice with really nothing that is medically proven?

    edited to fix my horrid grammar and punctuation.
     
    Last edited: Jan 27, 2016
  5. andrie

    andrie

    Messages:
    21
    Likes:
    17
    Yeah, I doubt anything will come from this to be honest. Seeing as there is no official treatment plan for CFS, what would you call mainstream recommendations?
     
  6. Woolie

    Woolie Senior Member

    Messages:
    1,930
    Likes:
    14,556
    I'm not sure how it works where you are, @andrie, but it could be worth considering if there's any downside to suing, one that might outweigh the upside. Do such complaints appear on your record? Will doctors tend to know you have tried to sue, and could that affect who you can see and how you'll be treated in future?

    That would all be worth it if you could get something good out of this, but I'm dubious about whether what you say amounts to malpractice. For that, you'd need to show they diverged from recommended practice or neglected or misperformed some standard step in the procedure. The hospital seems to be following the official line taken pretty much everywhere on ME/CFS.

    Welcome to the bizzarro world of MECFS!
     
    Aurator and Sea like this.
  7. andrie

    andrie

    Messages:
    21
    Likes:
    17
    Well, they are supposed to follow the International Consensus criteria and hence should've given me a proper diagnosis and educate me on how to live with the disease. So in that regard, it was malpractice. They also refused to do a cortisol panel when I had major cortisol issues.
     
  8. Sea

    Sea Senior Member

    Messages:
    1,268
    Likes:
    2,650
    NSW Australia
    Mainstream recommendations would be CBT and GET. We're better off when they offer nothing
     
  9. andrie

    andrie

    Messages:
    21
    Likes:
    17
    Honestly, I don't care. With the crap I have on my record it can't get much worse. Also it's not a lawsuit, it's a complaint directed at the 'governing medical office'. There's no money involved.

    Yeah, I doubt anything will come from this. But I also knew that there's been plenty of people in my position and if no one complains then there's not much that will change any time soon.
     
  10. andrie

    andrie

    Messages:
    21
    Likes:
    17
    What is GET?
     
  11. minkeygirl

    minkeygirl But I Look So Good.

    Messages:
    4,678
    Likes:
    4,647
    Left Coast
    I understand you are angry. I misread "complaint". The reality is, is their ignorance malpractice? Can you go to a gynecologist and hope he can diagnose arthritis? Going some place that is not known for diagnosing CFS and expecting it?

    Not running labs is not malpractice as far as I know. If it was I'd be rich from all the docs I sued.

    Good luck.
     
  12. Woolie

    Woolie Senior Member

    Messages:
    1,930
    Likes:
    14,556
    @andrie, GET is graded exercise therapy. Do all you can to avoid this if recommended!

    I get that complaining might be a good way of at least making your voice heard. It might make you feel better. But then again, you'd need to be ready for the likely brush-off at the end, which might leave you feeling even angrier and more powerless.

    People who are new to MECFS are always shocked and amazed at the treatment they get. Up to now, they've been on the right side of the medical profession - their complaints have generally been taken seriously and treatment offered. Getting MECFS is like a kick in the teeth, because it just isn't that way. We are fobbed off and treated as if we are imagining it. And the worst of it is, this means any objections we raise about our treatment are also put down to our "dysfunctional thinking". We can't win. Our ideals about science and modern medicine get crushed as we discover the reality from the other side.

    Another option is to join us here at PR and help contribute to the fight for better research and recognition. Only then will things really change for us.
     
    Gemini, Mel9, alex3619 and 13 others like this.
  13. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

    Messages:
    1,086
    Likes:
    4,383
    Toronto, Canada
    You may also consider posting on a website like ratemds for public awareness - lots of folks will check out doctors before going to them:

    https://www.ratemds.com/
     
  14. Sea

    Sea Senior Member

    Messages:
    1,268
    Likes:
    2,650
    NSW Australia
    The ICC has not been adopted by any regulatory department, it has no authority. It is only those who are interested in studying or treating ME/CFS who use it.

    A cortisol panel is only required (according to mainstream recommendations) when there are red flag symptoms for Addison's disease.

    If you want to complain, complain to those responsible for the recommendations and for the funding for research. You won't have any success with trying to show malpractice from the hospital with those complaints.
     
  15. Aurator

    Aurator Senior Member

    Messages:
    625
    Likes:
    3,077
    The following paragraph from the NICE guidelines does suggest that at least one thing they should have done was not done in your case:
    "1.2.3.1 Advice on symptom management should not be delayed until a diagnosis is established. This advice should be tailored to the specific symptoms the person has, and be aimed at minimising their impact on daily life and activities."

    I waited many months for my diagnosis, and though ME/CFS was clearly suspected I was given no advice on symptom management before formal diagnosis. Mind you, I wasn't given any advice on symptom management after diagnosis either. At least they were consistent, just as they were with the standard medical care (so often compared unfavourably with GET/CBT by proponents of the PACE Trial) they offered me before and after diagnosis; this too was zero.

    It would be nice if the treatment patients got offered was simply useless; instead it seems more often to be either non-existent or positively damaging.
     
  16. Kati

    Kati Patient in training

    Messages:
    5,463
    Likes:
    19,556
    Hi @andrie, I understand your anguish and I can relate to that very much.

    What needs to happen is changes at the government level. You are not mentioning where you are from, and it matters a lot. Health policies and diseases guidelines are set by physician guidelines. It means that physicians do not care about CMV unless you have HIV, or have just had a bone marrow transplant. CMV status also matters a lot in pregnancy as it can seriously affect a newborn.

    Research and guidelines for ME have not matured enough to make it to med school and make it common knowledge that us patients have a problem with viruses. Our experts know we have a problem with viruses, but they have no traction with their peers due to stigma.

    Patients unfortunately will not have much traction in telling a physician that they're wrong. However if we band together and tell the governments that we need research for ME, then maybe things will change.

    We have managed to get a few outsiders interested in dismantling the research surrounding PACE trial, which still to this day guides the physicians about the official treatments for ME: CBT (cognitive behavioral therapy and GET (graded exercise therapy). The work of David Tuller and James Coyne as of late has been invaluable but patients have been highlighting the poor science for at least 2 decades.

    We need to fight at a higher level than the 1 doctor who disregarded your CMV titers. We need better guidelines, better treatments and better research funding.

    Best.
     
    Last edited: Jan 26, 2016
  17. Kati

    Kati Patient in training

    Messages:
    5,463
    Likes:
    19,556
    sarah darwins likes this.
  18. taniaaust1

    taniaaust1 Senior Member

    Messages:
    11,899
    Likes:
    12,706
    Sth Australia
    IF you have the energy to do it and IF its going to make you feel better putting a complaint to the hospital over how they treated you or didn't, well do it then. But seriously I doubt that it will do anything and you may not think the stuff on your record cant get any worst but it can, rock the boat too much and if they start seeing you as a trouble making, they may add on something like borderline personality disorder to the hypochondria they have already there. And once something like that is added, then you will be seen as a lier over ANYTHING and everything and just a trouble maker.

    It truly sucks the way we are treated. Ive put complaints into the hospital but they have been mostly over breach of the gov hospital policies. Hospital policy breaches are seen as serious and in those 2 cases my complaint was acted on.

    The one time I put in a complaint over a head nurse mocking me over the illness though, I had a witness to it who could of supported if they followed that mocking complaint up. Nothing to my knowledge was done.

    "No education what was going on with me or any type of treatment for ME/CFS. All they did was offer sleeping pills and SSRI's."

    offering you sleeping pills and SSRIs IS quite standard kind of ME/CFS treated. Treating the symptoms they see is standard ME/CFS treatment.

    Hospitals don't tend to follow international ME/CFS guidelines but rather stuff coming from the CDC or standard stuff from whatever country you are in.

    In fact the treatment you got given is far better then many with ME/CFS get.. in the fact they gave you an MRI and did recommend some treatment. They didn't just completely ignore you and kick you out.

    and they did give you a diagnoses even if it was wrong.. hyperchondria etc..
     
  19. taniaaust1

    taniaaust1 Senior Member

    Messages:
    11,899
    Likes:
    12,706
    Sth Australia
    but they didn't breech that guideline in the posters case.. they recommended sleep pills and some drugs to her.
     
  20. sarah darwins

    sarah darwins I told you I was ill

    Messages:
    2,467
    Likes:
    10,480
    Cornwall, UK
    Kati likes this.

See more popular forum discussions.

Share This Page