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 ...
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What Psychological Topics Need to Be Researched?

Discussion in 'Latest ME/CFS Research' started by sparklehoof, Sep 26, 2017.

  1. Dear Friends,

    What psychological aspect(s) impacts of ME would you like to see researched?

    Here are some questions to get your juices flowing

    1. What, if anything, sets ME apart from other invisible illnesses?
    2. Are PWME more, less, or equally marginalized as compared to people suffering from equally debilitating chronic illness?
      1. How?
    3. Do you believe that, you personally (whatever your health insurance, geographic location, or financial means) will have access to a treatment that will get you well enough to support yourself financially and live independently?
      1. If so, when?
      2. If your belief is rooted in research, could you provide a link or some info?
    4. What are the top 3 emotions that you associate with ME?
     
  2. Invisible Woman

    Invisible Woman Senior Member

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    To be honest -none.

    Until we have an effective treatment then I would rather that all resources were spent on developing a treatment or cure. We have spent far too much on psychology/psychiatry already with only harms to show for it.
     
    Artstu, Woolie, luludji and 22 others like this.
  3. Wonko

    Wonko Senior Member

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    The other side.
    Okay, whilst I echo, strongly, the post above, I'll give the questions a go.

    1. I have it, I do not have the other "invisible illnesses"
    2. Yes, they are offered treatment, we are, at best, ignored apart from by BPS, charlatans, abusive media and as low hanging fruit by budget cutting government departments.
    3. No, I'm old, and feel much older, by the time a treatment is devised and released I'll definitely be past "retirement" age, probably not even be here.
    4. None*

    *edit is "pissed off with the whole effing thing" an emotion ;)
     
    Last edited: Sep 26, 2017
    Artstu, Chezboo, AndyPR and 7 others like this.
  4. A.B.

    A.B. Senior Member

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    The best psychological treatment for ME/CFS is an effective medical treatment, equitable funding, acceptance of the illness by society.
     
    Woolie, medfeb, Kenshin and 23 others like this.
  5. ivorin

    ivorin Senior Member

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    Perhaps research done on various psychiatric medication and it's effect on a set of pwME subsets looking at parameters like ease of coping, happiness level, pain threshold.

    1. I don't know, I don't have them.

    2. More. No society and medical establishment understanding.

    3. Maybe. I am young but my health is declining and I am having trouble taking the severe debilitation I am experiencing. If I manage to survive another 5, 6 years perhaps we may have medication adequate enough to provide enough relief to live a more or less normal life. Rituximab and Suramin look to be the primary ideas to put faith into -- therapy-wise.

    4. Fear, uncertainty and hopelessness.
     
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  6. Hutan

    Hutan Senior Member

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    Why do you ask?
     
  7. BurnA

    BurnA Senior Member

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    The harms caused to patients by poor psychological research.
     
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  8. ivorin

    ivorin Senior Member

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    Stop dissing the thread, there are some potentially useful questions to be answered by thinking about the psychological aspects of what we are going through. I've been hurt by the psychiatric lobby more than most and I still think there is an important component to think about here, especially while we wait for treatment options.
     
    ladycatlover likes this.
  9. TigerLilea

    TigerLilea Senior Member

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    I don't. I can't think of a bigger waste of money. Put the money into researching the biological cause of ME.
     
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  10. Mrs Sowester

    Mrs Sowester Senior Member

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    I don't want to see a single penny of research money or moment of research time wasted on the psychological aspects of ME. It has been done to death and got us nowhere.

    I'm in my mid forties, I feel it's safe to hope that there will be a treatment that will allow me to have a normal life again before I hit retirement age. And if it doesn't happen for me it has to happen for my daughter, she is 27.
     
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  11. ivorin

    ivorin Senior Member

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    We'll get there sooner, it's objective positivity :)
     
    Mrs Sowester likes this.
  12. ivorin

    ivorin Senior Member

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    You know that's not how research funds are handled, there is no giant cache that is distributed around. There will be psychological research whether we like it or not, may as well be the useful kind.
     
    ladycatlover, Wonko and adreno like this.
  13. BurnA

    BurnA Senior Member

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    I have yet to see any useful kind.
    Useful for the researchers maybe and the quacks who can point to yet another flawed study to justify their ridiculous claims.

    I suggest the OP ask MS or RA or asthma patients what psychological aspects they would like and see what the responses are.

    What will that reveal about ME ?
     
  14. Webdog

    Webdog Senior Member

    I'd like to see researched the psychological consequences when ME/CFS sufferers are mistakenly misdiagnosed with depression or some other psychiatric disorder.
     
  15. Wonko

    Wonko Senior Member

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    The other side.
    That we need therapy, whatever the answers given are.
     
  16. alex3619

    alex3619 Senior Member

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    The starting questions are much more about social issues than psychological ones.

    For me the pressing psychological issue is about doctors ... how do they confuse ME and depression? An ME patient will have a different psych response to a depressed patient. We want to do so very much, but cannot. Depression frequently results in the loss of interest. The only time this might be confusing is if the ME patient is also depressed. We really do not have a good understanding of having both issues. However I think depression is nearly always biological, not psychological. The psychology is a symptom of the underlying issue, not the issue itself.

    Even the emotional aspects are mostly about social issues. Its how we respond to injustice, disbelief, abuse, etc..

    With ME itself, I think doubt is a big one. It takes a while, sometimes a great many years, to begin to understand what we are going through. We think doctors have answers, we think a cure must exist, we think we will be treated fairly. Over time those views get challenged and we change how we think.

    So most of the psychology has nothing to do with ME, and is about the social issues around ME.

    In terms of psych symptoms, all the brain fog related symptoms are psych, but I would emphasize they look much more like brain problems. In other words, blatant or subtle neurological issues. This includes problems with planning, concentration, memory, mathematics, processing stimuli, etc.

    Most of the direct emotional issues seem to be about dealing with exhaustion, pain, confusing, and the vast array of other symptoms. In other words they are secondary to the disorder, not actually a part of ME itself.

    My dominant emotion that is ME related is righteous anger. We are frequently abused, marginalized and ignored, and for highly prejudiced reasons.
     
  17. BurnA

    BurnA Senior Member

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    Me too.

    That means:
    "Angry people more likely to get ME"
     
  18. alex3619

    alex3619 Senior Member

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    The very definition of nonscience, and indicative of psychobabble. Sir Karl Popper was deeply anti Freudian as a result of this, and coined the word nonscience. Later the word pseudoscience was added.

    It is not clear what percentage of psychology and psychiatry are pseudoscience. Psychiatry probably has a very high percentage though, and my best guesstimate is about ninety percent.
     
  19. Alvin2

    Alvin2 If humans were rational...

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    There are issues i would like to be researched, but the profession has a sordid history and a well earned reputation for failure and harming patients making it hard to trust providing them direction.
    That said i would prefer the money at this point to be directed to legitimate medical research.
     
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  20. alex3619

    alex3619 Senior Member

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    I am waiting to hear a doc say that. Sadly its backwards, as I am sure you are aware. I was a placid, mellow individual, very calm, prior to ME disrupting my life, and people in deep and sometimes hostile denial about that.
     

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