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ME/CFS and depression co-morbid needing independent treatment

Discussion in 'Latest ME/CFS Research' started by shrewsbury, Dec 15, 2009.

  1. shrewsbury

    shrewsbury member

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    Gracenote just posted the following 2009 study by the Japanese Society of Psychiatry and Neurology (my bolds) on the definitions thread.

    Here's ammunition for communicating with Reeves, Wessely or any dinosaur doctor that thinks, no - if they thought they would know the two are independent, I'll use believes and give them the benefit of doubt that they do believe so and do not have any other motives, that ME/CFS is not a medical condition.

    Does anyone know of similar studies? If more exist, it might be a useful tool to have them all combined in a thread.

    islandfinn:)
     
  2. mezombie

    mezombie Senior Member

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  3. Mark

    Mark Acting CEO

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    I'll make one suggestion on psychiatric disorders and their relationship with CFS/ME: the fundamental underlying factor that causes CFS to encourage comorbid psychiatric disorders is the psychologising of the disease itself!

    I lapsed into major depression after a couple of years with CFS, really at the point when I realised my GP wasn't taking my illness seriously as a physical condition, and when I started to hear suggestions that it might be a psychological condition. It was pretty easy to recognise that I was stuck in a Catch-22 now, with no hope of research, treatment, recognition or cure, and not even the safety net of benefits to fall back on. I could already tell that I was on my own with this, I was going to lose everything and face a struggle to survive; the logic that trapped me was inescapable.

    That's what sent me into a spiral of depression: the feeling that nobody around me believed I was really ill, the knowledge that help was not on the way, the sense that there was no hope of a cure in my lifetime because the condition wasn't even been taken seriously or researched properly.

    I fought and recovered from depression in a couple of years, with the help of citalopram and some excellent group therapy (based on cognitive principles I'm afraid!). That was a decade ago; I consider myself permanently cured of depression, and I do know a bit about it. I get down, but I get up again...

    But I do think that other comorbid psychiatric disorders in PWCs could have the same fundamental root. Do people have a tendency towards paranoia also I wonder? Could that be because nobody believes what we know to be true, and nobody's honest with us about that disbelief?

    So the interesting study to me would be: the relative incidence of psychiatric disorders amongst CFS patients in environments / countries / medical practitioners that emphasise / do not emphasise psychological treatments and explanations for CFS. Perhaps in the future they will even be able to quantify the psychological damage done to us by psychologising the condition. Is the general mental health improved amongst those PWCs who aren't being accused of being mad? A very obvious question, but scientists seem to enjoy proving the blindingly obvious...
     
  4. mezombie

    mezombie Senior Member

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    Somewhat related

    I agree, Mark. And I think the whole way the CDC ignored the symptoms of the Incline Village outbreak and coined "Chronic Fatigue Syndrome" set the stage for psychologizing the illness.

    Lenny Jason studied how medical staff perceived patients depending on what name their diagnosis had, including Chronic Fatigue Syndrome.

    The results are not surprising.

    Here is the abstract of the study.
     
  5. Mithriel

    Mithriel Senior Member

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    I can't remember details, sorry, but in the early 90s(?) someone did a study where they used all the different questionnaires that are used to detect mental health problems.

    They found that the amount of mental health problems a person with CFS had depended on which questionnaire they used.

    The ones which took tiredness, headaches, muscle aches, lack of concentration as MENTAL symptoms obviously found that 100% of patients were mentally ill. Ones which did not included these physical symptoms but only looked at anxiety etc found very low levels of mental distress.

    The often repeated myth that there are high levels of psychological problems in people with CFS all come form studies using the first type of questionnaire.

    The other problem we have, especially in the UK, is that studies always use healthy controls, not people with other chronic illnesses. When these have been used as a control group levels of depression and so on are similar.

    Mithriel
     
    Nielk likes this.
  6. Dolphin

    Dolphin Senior Member

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    I don't recall research talking about paranoia - anyone else?

    Distrusting one individual posting on an anonymous internet forum is not paranoia, BTW, especially if several people are also (to some extent independently) suspicious. Some psychiatrists/psychologists and indeed others in society can rush to use psychological/psychiatric labels.
     
  7. Alice Band

    Alice Band PWME - ME by Ramsay

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    No to the paranoia. Although I have seen people with a prior psychiatric diagnosis that includes Paranoia also go on to claim a diagnosis of CFS or ME in the UK.

    Personally I've found that I am probably more trusting by nature. Had a good childhood so expect the best from people.

    Mark, you are going to have an eye-opening event if you carry on hanging around the CFS groups.

    I remember when one troll was exposed after a police investigation and received a caution. A group owner wrote to me after the event apologising. They were new to the internet groups and bitterly regreted not listening to the warnings.

    Keep your mind and your eyes open.
     
  8. Dolphin

    Dolphin Senior Member

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    Thanks Mithriel.

    Here's a short extract from something Dr. Ellen Goudsmit wrote:

     
  9. Mithriel

    Mithriel Senior Member

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    Thank you :)

    I remember reading things but I don't keep copies. I am glad there are people archiving all this material.

    Mithriel
     
  10. shrewsbury

    shrewsbury member

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    Thanks all for the great input.

    I posted the study because, as I understood it, the Japanese national psychiatric department concludes that ME/CFS is organic, and independent from depression. They say there is a percent of people who have ME/CFS who also get depression. And that both need to be treated separately - depression as a psychiatric disease and ME/CFS as a medical disease and that the treatment outcomes are independent. I didnt focus on the fact that they mentioned a high rate of comorbidity. I was just excited that a national psychiatric department sees them as distinct, independent diseases needing separate treatment.

    My original intention had primarily been wanting research that establishes that ME/CFS is not the same as depression; that ME/CFS is an organic disease, and that some people with ME/CFS may also get depression.

    I thought if we developed a page that had 1 3 succinct brilliant quotes from highly respected people in highly respected studies (with the source documented), along with a list of other supporting research, showing that ME/CFS and depression are separate diseases needing separate treatment, we could bring that with us to appointments with new or uneducated doctors.

    Because psychiatry has been so misused in ME/CFS, I have a huge unthinking reaction as soon as I hear the word used in regards to ME/CFS. It's incredibly charged for me, I get a strong negative reaction and presume the worst. .

    However, I think examining the area and the research could be of great help to many of us, both in dealing with the medical profession, and understanding the diseases, and therefore treatment. Im so fascinated by this area and think its quite important.( I guess I could have chosen a catchier title for the thread!)

    I also feel that because of the misuse of psychiatry we're tempted to throw out the baby with the bathwater sometimes and perhaps impede those who do also have depression and who would benefit from treatment for it, and also those who don't have depression but who could use some counselling to help adjust to how ME/CFS has drastically changed our lives.

    I guess this is the fine line that the IACFS is trying to walk. I dont know the history well enough to know how well they do it. I had great trepidation trying to write this, thinking people are going to whack me for it!

    But the info youve all brought to this thread has perhaps widened the scope

    Marie I knew Jason would have done something. One of my someday treats for myself is to read all of his work.

    Mark I dont really know enough about depression and how it is activated to speculate on how ME/CFS and depression are related. My understanding of comorbid is that someone has the diseases at the same time but there is no causality. That having been said, a specialist told me that some people get a reactive depression they get depressed reacting to how devastatingly difficult life with ME/CFS is. Overall Im with Tom though. I dont see that people with ME/CFS have a stronger tendency towards depression than either healthy controls or those with other chronic illnesses, nor have I seen any support for paranoia tendencies. Have you found any reputable studies supporting either of these ideas?

    Mithriel How great! This sounds like a very useful study. It makes so much sense that if doctors double-dip as it were, using physical symptoms that are part of the medical disease ME/CFS, like fatigue, twice, then they could come up with a depression diagnosis. But if they only use mental symptoms, like anxiety, then the percentage of depression diagnoses is very small. If we go any further with this, well have to try to track that study down.

    Alice I dont know if Im just too tired to think clearly today, if its UK humour, or something else, but I dont understand your post.

    Tom - Dr. Ellen Goudsmits s quote is brilliant! It says it so much better than I did, although I do like my double-dipping terminology. Do you have the link to the study that this is part of?

    Do you think this is the same study that Mithriel was referring to?



    So to tie up, I was wondering if it would be of use to gather together here for reference, and perhaps develop doctor education pages as described above from them

    1. studies that show comorbity,
    comorbidity (k mr-b d -t )
    n.
    A concomitant but unrelated pathological or disease process.

    2. Studies that show how MECFS is sometimes misdiagnosed as depression

    3. Studies that show a misdiagnosis of comorbid depression from using ME/CFS symptoms, such as fatigue, twice for the organic disease and then again to diagnose depression


    islandfinn:)
     
  11. Dolphin

    Dolphin Senior Member

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    It was from a chapter in a book:
    Goudsmit, EM. The Psychologisation of illness. In Brostoff J, Challacombe SJ (eds.) Food Allergy and Intolerance. 2002. 2nd Edition. WB Saunders. Pp. 685-693.

    I'm not sure - possibly not - but it seemed relevant.

    Just to be clear, I just replied to the paranoia part of Mark's post.

    I think he makes interesting observations otherwise.

    But as you say, a difference could be made between reactive depression and other types of depression. But I'm not sure that definition of comorbid is correct - my understanding of comorbid conditions is that they are simplying listing what is happening along with the original condition and don't try to guess if there is causality or not.
     
  12. Dolphin

    Dolphin Senior Member

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    I have seen such lists before e.g. Action for M.E. had a list in the early/mid-90s on the differences between depression and ME, citing research studies.

    My guess is that with a search around the Internet, you or somebody else might be able to find something.

    If you had something that could be posted or linked to, other people could add other suggestions in the thread.

    You probably were thinking this anyway, but I think a different thread title might bring in contributions from more activists who might not look at this thread. ETA: I see you mentioned the title of the thread yourself. It was fine for this topic which is supposed to be about specific studies/papers.
     
  13. CJB

    CJB Senior Member

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    I'm jumping in the middle of a discussion, so I hope my comments are relevant, and if not - please forgive.

    When I first got sick, my employer hired a private detective to follow me around. I became consumed with fear and paranoia. And I had every reason to be paranoid as it turns out.

    I'm afraid I continue to be a low-level paranoid. I was examined by two psychologists and one psychiatrist during the diagnosis phase, and none of them could find anything wrong with my psyche. One even told me she thought I was coping amazingly well. I was a ping-pong ball between the MDs and the psychiatric drs.

    But this is mainly what I wanted to add to the paranoia discussion. Woody Allen famously said, "Just because you're paranoid doesn't mean someone isn't out trying to get you.

    In my humble and simple opinion, we have every right to be paranoid and it would be hard for me to believe that anyone who's been sick for any length of time hasn't experienced at least one major episode of paranoia.
     
  14. Dolphin

    Dolphin Senior Member

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    http://en.wikipedia.org/wiki/Paranoia
    I mainly read psychological and psychiatric papers on ME/CFS and not on other areas. These are terms I've barely if ever come across. They're not something even "hardline" psychiatrists tend to be mentioning.

    I think we probably need to make a distinction between a lay-term and a technical term.

    Being followed around by a detective might be a risk factor for problems with paranoia - it shows the knock-on effects snooping like this might cause. Fortunately I never had such problems (i.e. being followed around by a detective).
     
  15. fresh_eyes

    fresh_eyes happy to be here

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    I agree, TomK. I don't imagine Mark was referring to the technical diagnosis of paranoia. Ditto for you cj - being suspicious or fearful after having an episode like someone hiring a private detective to tail you does NOT make you paranoid in the diagnosable sense, as demonstrated by the therapists' evaluations you mention.

    A sense of unease precipitated by the demonstrable fact of people thinking you are mentally ill when you know you're in fact physically ill, is NOT paranoia. It's legitimate fear.

    It just makes me so angry how you in the UK have been abused over this. Argh.
     
  16. Mithriel

    Mithriel Senior Member

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    After the death of Sophia Mirza, when we realised she was forcibly removed by police after being sectioned I think all of us in the UK have the fear of that at the back of our minds. A new GP, a trip to A&E after an accident and we may fall into the hands of someone who does this "for our own good".

    What chilled me especially was the General Medical Council's reaction. They said that any patient has the right to refuse treatment but that her decision not to accept the treatment offered (CBT and GET) was so perverse - their word - that in itself it was proof that she could no longer make decisions for herself so that sectioning was justified.

    I also worry about my children and now grandchildren because I know that children are removed from parents and court cases brought.

    I think it must be the stress people suffered under Stalin where there was always the possibility of breaking the rules and they changed all the time.

    On UK forums I've noticed that anyone with depression or severe anxiety is encouraged to seek help. It is surprising, really, that there is not more animosity to the profession and shows how open-minded and reasonable people with ME are. Simon Wesseley's continual statements that we won't accept a psychological diagnosis because of a prejudice against psychiatry is just another of his lies - a word I never use lightly - and is designed to bolster his distortion of us to other psychiatrists; to prejudice them against US.

    Mithriel
     
  17. flybro

    flybro Senior Member

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    Neuro Psych

    This is how neurologists are trained to diagnose functional disorders.

    http://www.acnr.co.uk/pdfs/volume4issue6/v4i6reviewfunctional.pdf

    It's amazing that we aren't crazy, it's amazing that we're not all totally paranoid.

    3. Previous functional symptoms For example: Irritable bowel syndrome, chronic fatigue, early hysterectomy
    in women
    , testicular complaints in men. Try to corroborate with medical notes.

    So does this mean all early hysterectomys are a functional symptom?

    Looking back on things I think my misplaced persistant optimism and faith in the medical services, looks crazy.
     
  18. fresh_eyes

    fresh_eyes happy to be here

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    Sorry to be blasphemous, but Jesus H Christ that is unbelievable. Functional hysterectomy??? What is this, 1900?
     
  19. Dolphin

    Dolphin Senior Member

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    I see Michael Sharpe was one of the authors of that.

    Michael Sharpe could be said to be one of the "big three" (Simon Wessely, Peter White and Michael Sharpe) who have individually or together often been at the heart of problems for people with M.E.

    Peter White is quite close to Bill Reeves and the CDC.

    I prefer saying the Wessely/Sharpe/White School rather than the Wessely School as I think it is important people are reminded as much as possible that Michael Sharpe and Peter White are also trouble.
     
  20. Cort

    Cort Phoenix Rising Founder

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    I know we haven't published the guidelines yet but publicly referring to someone as a troll either directly or indirectly will not be acceptable on these forums. Suggesting someone may be a troll because of their ideas rather easily falls into the 'pejorative characterization' category. Viewpoints should stand or fall based on the weight of evidence one brings to the table not on who's delivering the evidence.

    If you feel that someone has 'invaded' the forums then please contact one of us privately but the idea of invasion itself is rather foreign to the concept of a forum. What we are chiefly worried about are people whose behavior - not their ideas - are disruptive to the free exchange of ideas.
     

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