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The ME/CFS Stigma

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Mar 13, 2013.

  1. Phoenix Rising Team

    Phoenix Rising Team

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  2. RestingInHim

    RestingInHim Realist

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    Excellent!! Thank you, Carol! I would like to print this out to give to others. The problem is...there is a stigma to handing out information in the hope others in our lives will finally get it. I can hear the thought-process in their heads by the expression on their faces... "Here she goes again." It seems the more we try to get people to acknowledge our illness...the more they think we are hypochondriacs...so I rarely do. What i would give for someone asking me, "What is it like to have your illness?"! Despite all this...your article is very encouraging...very affirming...as you so specifically named each reason for the stigma... ignorance being the primary culprit. I will print it out...for myself...for those days I'm wondering if it IS all in my head! After 20 years...and all the information available today...and finally finding a ME/CFS specialist...there are days....
    kauri, beaker, Nielk and 1 other person like this.
  3. Valentijn

    Valentijn Activity Level: 3

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    A very insightful article, Carol, thank you :D
  4. taniaaust1

    taniaaust1 Senior Member

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    Great article :) .. Im thinking about printing it out and handing to a couple of the gov agencies who deal with me (and not well).
    Nielk likes this.
  5. justy

    justy Senior Member

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    Thank you so much Carol for your article - it is one of the best i have read on this illness. Like others have said i would love to print this out to give to family members etc - but still afraid of the 'look' one gets when attempting to educate people.

    All the best, Justy.
  6. snowathlete

    snowathlete

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    Thanks Carol, as others have said, its a really good article. I was hooked from the opening paragraph.

    Occationally, when I tell someone that I have ME, they look really concerned for me, and I've learnt what that look means...It means that they have confused ME with MS...
    justy and Valentijn like this.
  7. Shell

    Shell Senior Member

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    This is a good article. It is one of those "what the heck happened?" questions in my head. WHY is ME/cfs considered a joke among so many professionals?
    According to Hilary Johnson a lot of the dismissiveness started well before anyone saw how horribly shambolic and complicated this disease(s) is. The CDC were at the root of dismissing it and that's before anyone of their staff had even met a patient.
    Something was at the bottom of that. It can't be a simple as symptom overload on poor didum docs.

    Hippocrates must be spinning as most docs I've seen in the last ten years couldn't even cope with "first do no harm."

    I don't tell people I have ME unless I know them well and trust them very much. Other than that I say I have dysautonomia- which is true but doesn't cover the whole shamang.
  8. Mark

    Mark Acting CEO

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    I'm really pleased to see that you all appreciated Carol's article as much as I did. :)

    That experience is surely common for many of us. My participation on PR forums has changed my interactions in the real world quite considerably, particularly in respect of this particular problem. I think the forums - and moderating especially - have helped me to realise that when you're trying to get a point across, sometimes "less is more". Rather than banging my head against a brick wall, and trying harder and harder to make the point in a stronger and stronger way, with the reaction getting worse and worse, now I'm more inclined to try to understate my point and leave room for the listener or reader to draw their own conclusions.

    For example, I might quietly state a couple of key facts and recent developments, in a very calm and low key way, and not offer my opinion. A couple of times, I've then been really surprised that people who would previously argue back to try to balance my opinions, now respond with something along the lines of "my god, that's really scandalous, they should be shot!". On one occasion, I was amused to find myself reacting to that response by wanting to say "hmm, well yes, it's pretty bad, but I wouldn't go that far"....and then I realised that was exactly what some of the negative reactions I got before really were: attempts to balance out my comments when I was going a bit too far. Many people try to see both sides and aim for balance, and often that comes across as contradicting everything you say. It can be an artificial conflict; just an action/reaction situation.

    They do say that the definition of insanity is trying the same thing over and over and expecting different results. So I think it's worth trying the approach of toning things down a bit and leaving room for the listener to have their own opinions, reactions and interpretations, rather than provoking contradiction. I also began to find, when I tried this, that I was a lot calmer in myself, much less agitated by the conversation. Gradually I began to realise that in a lot of these reactions, I didn't really need the validation I was seeking. Of course, that may be partly because I've already found so much validation here on PR...
    MeSci and Nielk like this.
  9. kauri

    kauri

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    Thanks for the comments. Each one is moving. It's true that there are likely other motives also for the stigma. But I believe we can do something about this. We do have power over the AMA via our government and now is a great time to flex our muscles, since President Obama has asked that ME/CFS be given high priority.

    The more I have thought about what COULD help change things, the more I come back to the role and responsibility of doctors.The Canadian Consensus document instructs doctors to:

    "Initiate education of the patient, their family and support network members as soon after diagnosis as possible".

    Better education of doctors is relatively cheap and so should be easier to win than more expensive requests.
    I'm interested in gathering a list of suggestions of helpful things doctors can do for their ME/CFS patients. If anyone has any experiences or suggestions they would be appreciated.
    Thanks again for all your comments, they really encourage me to keep working on this,
    Carol Schmid
    justy and Valentijn like this.
  10. Sasha

    Sasha Fine, thank you

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    Very interesting article, Carol, and that's an interesting idea - gathering that list of suggestions. I think it's worth starting a separate thread on it with a title such as, 'Your suggestions wanted for what your doctor can do for you.'

    FWIW, my doctor could helpfully write to the NHS and MRC (the UK medical research funding body) demanding research into my disease because it's ridiculous that he has no treatment to offer me.

    I have a ton of similar suggestions. :cool:
    snowathlete likes this.
  11. kauri

    kauri

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    Thanks Sasha for your excellent suggestions. I'd love to hear the rest. I'll check with editing about the separate thread idea. I found my sympathetic doctors were grateful if I drafted a letter for them to put on their letterhead and sign.
    Carol Schmid
    Sasha likes this.
  12. jimells

    jimells Senior Member

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    Actually it's the other way around: the AMA has too much power over the government.

    One example is their ownership of the CPT codes. This is the coding scheme used in medical billing to describe the procedures the doctors are doing to us. The government, via CMS (Centers for Medicare and Medicaid Services) requires every provider in the country to use these codes when billing Medicare for reimbursement. Private insurance companies also use these codes. But Medicaid does not - they have their own separate codes. Since the AMA owns the copyright, every provider (even non-physicians) must pay the AMA to use government-mandated codes.

    Doctors are responsible for the policies of the AMA. If they were really unhappy with AMA policies, they could quit the organization, withhold dues, or organize themselves to toss out the leadership. I see none of these things happening today. I doubt that I will see them tomorrow.

    p.s., I used to write medical billing software until I got too sick to do that work.
  13. leela

    leela Slow But Hopeful

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    excellent. so well written and clear.
  14. kauri

    kauri

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    You are right, the issue of the CBT codes is very important and its true that the AMA has enormous power over us. But they are not above the law as was shown when they were found guilty of acting like a guild and deliberately limiting the number of doctors to keep their pay rates up.
    Doctors mostly do not even belong to the AMA, which has only a couple of thousand members. We can insist that they provide an equitable distribution of services. It is the responsibility of our government to ensure they do so.
    We can petition our governement, making the case that we are not getting equitable treatment.
    .
    Valentijn likes this.
  15. akrasia

    akrasia Senior Member

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    An excellent post. Describing the suffering, I would go so far as to say trauma, generated by the treatment people with m.e. have received is very important. Each one of us has to make a journey to clarity, to keeping the pain of this experience conscious and reflecting what has happened accurately to each other is part of that project.

    My primary reservation is this:

    I find this too forgiving.

    I don't believe it ever was understandable. It was always deeply unethical, a denial of human suffering not seen since the early days of the AIDS epidemic. Institutions, both government and academic, and individuals who had contempt for patients, turned away from complexity. An ignorant and lazy mainstream media never challenged this as numbers grew and our intimates and the larger world abandoned a kind of imaginative compassion absolutely essential in leading a decent life as a citizen and human being

    It is my suspicion that the powers that be will seek absolution of responsibility by invoking bogus claims of ambiguity and opacity with regard to m.e. They could have known, they refused knowledge. No excuses.
    MeSci, jimells, Sasha and 2 others like this.
  16. kauri

    kauri

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    You make a very important point. This is medical abuse and many of us are traumatized by it. When doctotrs tell him he should try to exercise more, the very thing he is heartbroken not to be able to do., my son calls it "poking our wounds".

    .
    jimells likes this.
  17. Nielk

    Nielk

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    I really enjoyed reading this article. The problems were clearly stated in an easy to read manner. These are all important points. In order to "change the insanity" by doing something different, one needs to define this insanity.
    Carol, did a great job revealing some of the problematic issues.

    Thank you,
    Nielk
  18. Patrick*

    Patrick* Formerly PWCalvin

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    This is an excellent article, Carol.

    I personally think that the name Chronic Fatigue alone is a huge reason that the stigma is perpetuated. Obviously that's been covered ad nausem so I won't go into it again, but I will say that I think many of the reasons for the stigma that you identified trace back, in part, to that one single factor...the blasted name.
  19. PNR2008

    PNR2008 Senior Member

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    Your writing took my breath away (no pun). It stated the problems and injustices on so many levels and I applaud you. Now just what can we do about it? I'm really gasping for air now. God help us.
  20. GracieJ

    GracieJ Senior Member

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    Thanks, Carol, so much. I appreciate the timing on this. As one pwME/CFS who is back at work, it covers some of my frustration. I can work, but apparently not quite up to par, as I've now missed two raise deadlines, not quite making the grade. There is no explaining the hot, frustrated tears that well up at review time for several reasons, the obvious first one being that I could use the money! I don't let my employer schedule a review until I can get a good grip on my emotions. Sooooo close, but so far away.

    Knowing what I have accomplished under some difficult circumstances will never be acknowledged, and if I tried to explain myself, it would just make matters worse. It is such a Catch-22 situation.

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