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Why few dare tackle the psychology of ME

Discussion in 'General ME/CFS News' started by Firestormm, Sep 24, 2012.

  1. Firestormm

    Firestormm Guest

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    Well it looks like at least two known 'advocates' are indeed choosing to question his claims relating to unacceptable harassment. No wonder my post irked.
     
  2. Esther12

    Esther12 Senior Member

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    Pemberton's very brave to go against such a powerful group. What valiant campaigning journalism.

    Very, very brave. He must feel very pleased with himself.
     
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  3. maryb

    maryb iherb code TAK122

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    Thanks for the additional info on him annie I tend to flick through stuff and frequently miss important bitso_O
    So he wasn't manipulated - he's already one of theirs:aghhh:
     
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  4. Shell

    Shell Senior Member

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    The first half of the article is dishonest and that leaves me questioning the honesty of the second half over the threats. While it seems very likely that there are people out there who send stupid and crass messages, and posssibly threats, without engaging even a foggy brain, most of us don't do that and his broad brush approach seems deliberately dishonest to me.

    Is there an ME community? Possibly, but my bet is it's much like the home education community - there's a lot of us who work together, share ideas and meet up, and a lot who just want to tear down what the rest of us are doing. I learned that in the fight over family rights with the Badman and Balls fiasco (no, I am not making the names up). There were Home Ed parents who were abusive to fellow home edders let alone the anti-crowd, so I assume the same can be said for the "ME Community". It's part of the great spectrum of human nature sadly.

    On being systematicclay being lied to; me too. I lost count of the number of doctors who said "It will just go away," and of course the NHS has a weird system that ensures you never see the same doctor twice, so they could all lie, happy in the knowledge they were never going to see me again.
    I too could write a book on the lies, deliberate "shove off" mode and general crassness of so-called doctors and people like Pemberton are feeding that attitude. It is damaging.
    But if people are spouting off, and I bet there were some, they are damaging us too.

    If they (Pemberton, Wessley, White et al) really believed in the psychological aspects of ME or any other chronic or serious illness they would behave better than this. They don't believe it, because they aren't interested in sick people. They see only themselves.
     
  5. Bob

    Bob

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    I think you are in danger of blaming patients for the distortion of the facts that is being peddled by some journalists and psychiatrists.

    Pemberton only 'disappoints' you, but when some patients protest against such an abuse of authority, and against such poor journalistic standards, then they 'anger' you? That seems the wrong way around to me.

    Pemberton is in a position of authority, but patients are just a pretty random collection of members of the public. The public are well known for being quite random in their behaviour, and it's not my business to try to hold each member of the public to account.

    So for Pemberton to use the behaviour of a fairly random selection of the public, to define an illness, is incredible.

    If Pemberston has convinced you that patients are to blame for our own situation, then he's done a good job. He's succeeded in what he set out to do.


    I think that Pemberton is doing a better job of undermining our situation than patients are.
    I don't agree that patients are responsible for our situation.
    But I agree that it is not worth challenging him in terms of whether a few people have threatened him.
    It's none of my business.
    But what is my business is the way he has incorrectly portrayed both ME as a disease, and ME patients.


    You are buying into their misrepresentation of a community.
    This is what the Sun did with the Liverpool football community.
    They blamed the victims for their own disaster, based on a travesty of the truth.
    But Liverpudlians protested, loudly.
    First they were vilified, and called all sorts of names, but eventually they found justice after a lot of hard work.

    You shouldn't allow someone like Pemberton to make you think that patients are the problem.


    You can't do anything about what members of the public do. And they don't reflect on your character or illness, as Pemberton would have you believe.

    We can't do anything about a random selection of the public, but we can protest about Pemberton's article.


    I consider the article to be an abuse of power.


    I agree. It's pointless.
    I think it's best to just provide solid information and evidence about the nature of ME.


    I doubt if many of us condone illegal behaviour, but what's the point in sticking our noses in the business of Max Pemberton?
    And the behaviour of a few random members of the public does not reflect upon us in any way.
    Anyone who believes that the behaviour of a few members of the public defines an illness, really does not have any credibility.


    I think it is important to make sure that misinformation is challenged.
    I agree that one article does not have much influence, but it all adds up, and a number of articles can contribute to a mind-set.
    I don't think many of the comments under Pemberton's article are very good quality, unfortunately.
     
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  6. SilverbladeTE

    SilverbladeTE Senior Member

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    "JUST OBEYING ORDERS" went out as an excuse for heinous crime, 70+ years ago.
    Those who support this abuse and mass murder against ME patients, will pay for it, sooner, or later, and in court, in the full glare of the Public wrath and in calm, honest legal investigation, and then, retribution.
    More they do this obfuscation, more it proves intentional malfeisance: a deliberate attempt to block, to deny, to lie, to prevent help for the sick and dying.

    Bob has noted, the Hillsborough cover up has rammed a huge hole in the Establishment's "bullshit denial of everything" program. UK for over a century has a massive system of "pass the buck to the ends of the Earth" to deny redress of wrongs (see nuclear test veterans, asbestos, miners, you name it).
    yes they are capable of covering up biowarfare tests, or polio contamination, or it maybe originally it was just the suspicion it might be contamination...and today, government Ministers etc, are desperate to keep the lid on all this, not because they had anything to do with origninally, but they have been left with a very ugly can of worms, that if it blows open, will bite everyone hard in the ass.
    But as said, longer they lie, longer they cover up MORE FOLK WILL SUFFER, DIE AND HAVE CHILDREN KIDNAPPED BY ABUSE OF THE LEGAL SYSTEM
    and by God, will the Public be ***** p***ed off at that and put the boot into who ever is in power who has not exposed and condemned this. Hillborough, tortured terrorist suspects etc will be NOTHING to the anger over this scandal.

    So, do yourself a favour, MI5, or whoever may be reading this out there *taps the glass of his screen*, tell your Whitehall masters to grow a pair, sort this, to prevent a much worse, *uncontrolled* scandal some itme in the future that may spiral into worse problems.
    Honest admissions of guilt and pinning the blame on those actually responsible, in Parliament, will solve a lot of issues, and save the country huge amounts of money in the long term.
    Truth & Reconciliation, is a hell of a lot better than some screw up exposing a terrible scandal, when the country is having some other big issues that collectively could make a huge mess.
    Get on it! The Public is getting JACKED OFF with all the lies and bullshit, keep pushing it and Democracy inevitably fails, everyone knows it, and dance around it. hence, our democracies have been havign seriosu issues in recent times.

    SOLVE PROBLEMS, STOP HIDING THEM!
     
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  7. urbantravels

    urbantravels disjecta membra

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    I looked at the comments on that article and felt it was pretty futile to weigh in at this point. No sane person would wade through the ten pages of largely factless bickering (on both sides) to get to any new comments. Presumably in there *someone* thought to quote Lipkin himself on whether he thinks it's a 'real disease' or psychological in nature, but nobody will see that either. What a mess.
     
  8. Bob

    Bob

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    Yes, I wasn't impressed with the comments either. It might be more productive to write to the editor, with some factual info.
     
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  9. user9876

    user9876 Senior Member

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    I think these articles are worth responding to but with a rational argument about the science.

    I think they may have made a slight difference with Michael Hanlon in the mail since he wants to come across as some one who understands science. People never admit they are wrong but if the substance of their argument is challenged coherently then they may think twice next time. Not so sure about Max.

    Personally I don't think its worth commenting on the threats. I've no idea what happened, who said what etc. Its not a good story for us.

    I think we need to push forward two messages - one is a science based message that more research is needed and that there are glimmers of hope. The other is one of what it is like to be ill - I think Sonia's article helps here.

    And yes Bob I think there is a community here. I've had a quick look at peoplewithme.com, I hadn't seen it before, I'm not impressed. All I can say is that I'm glad I found phoenix rising.
     
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  10. user9876

    user9876 Senior Member

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    You should look at the definition of FII aka munchausens by proxy for perverse definitions such as this developed by psychiatrists
     
  11. alex3619

    alex3619 Senior Member

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    Opposition to a psychiatric diagnosis became a psychiatric diagnosis under Freud. Its one of the psychoanalytic defence mechanisms. In religion it would be an accusation of heresy. Under Freudian thought the argument is turned around, and it becomes the patient trying to defend themselves from an unwelcome "truth". I think its also been proposed under DSM-V, though I am not sure about that. In any case its one reason why psychoanalysis is not science. Its also a reason why modern psychobabble is not science. Bye, Alex
     
  12. biophile

    biophile Places I'd rather be.

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    The following common vernacular phrase among skeptics comes to mind : Evidence or STFU.

    Outsiders frequently apply such sentiment to patient anecdotes and opinions and experiences related to ME/CFS or the biomedical approach, rarely to the biopsychosocial approach or cognitive behavioural model of ME/CFS, and so far never to anecdotes from journals and researchers claiming to have been harassed or threatened.
     
  13. Vincent

    Vincent Senior Member

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    Well that's the thing, if they said they didn't know they would be vulnerable, and therefore no longer an 'authority' a bureaucratic god-like entity.
     
  14. Whit

    Whit Senior Member

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    I would love to have one of these psychobabblers come live in my home and see what my life is like, see how much I try to do, how inspired I am, how much effort and thought I put into setting my life up in a way that makes me healthier, and how much I sacrifice for that, how positive i am, how i get out of bed every single day shortly after my alarm goes off despite being bedridden for almost the whole day, how much I sacrifice to build energy to work on a few creative projects. I'm no different now than I was before I got sick. Wisened from a difficult situation, sure, but I am actually more inspired than I've ever been in my whole life. There's sooo much I want to do.

    I actually would love a real psychological explanation. I just want to make sense of what's happening to me in a real way. I would love a real road to recovery no matter what it is. But a psychological explanation doesn't make sense if you actually know someone with this illness and see what their lives are like. I tried to talk my psychologist into the possibility that I was just depressed or something, and he said I wasn't and wouldn't even hear it.
     
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  15. Bob

    Bob

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    Yes, it always amazes me that these psychiatrists can never have actually listened to their patients. They obviously just talk at their patients, rather than talk with their patients. A bad physician does not observe, or listen to, his patients.
     
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  16. Gavman

    Gavman Senior Member

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    If its not hazy, please feel free to cure all the sufferers. If evidence hasn't elucidated a consistent cure, how is it evidence? Its just a potential marker.

    Depression, anxiety and stress all have physical symptoms too. If someone is badly depressed, they have chronic fatigue too. Stress can impact us through each input, dealing better with stress will help you not matter whether you have a chronic illness or not. Its even more important to learn better ways to cope or manage for chronic illness patients so they don't burn out what little energy they have.

    No substantial evidence that ME is a psychological disease? Low b vitamin levels, low magnesium, neurochemical imbalances. All of these things are impacted by stress; ok it might be environmental, food related, physical malfunction, virus and/or bacteria. We still run mental processes that impact on stress.

    I think theres a very real reason why theres an avoidance of psychology with CFS/ME, because its bloody hard. When the body fires stress warning shots for seemingly no reason stress wise, its hard to actually deal with psychologically;

    My grandpa gets married when hes 60. At 62, she splits up with him. And he has a heartattack. Physical cause, yes, contributing psychological factor yes. As its a multi-system malfunction, which involves stress responses it makes a lot of sense to wear out psychological avenues. Clear cut saying its only a psychological disease or physical illness is narrow-minded.
     
  17. alex3619

    alex3619 Senior Member

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    A broken bone has a psychological component. That was demonstrated in an old experiment in the 70s. Nobody is arguing there are no psychological components. The issue is that some are trying to ensure that only one or two psychological components get treated, both of which might not be valid hypotheses, while every other issue (physical or psychological) is ignore. Bye, Alex
     
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  18. Esther12

    Esther12 Senior Member

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    Sorry, I've not been following this discussion closely, but I just wanted to add: 'stress' can be defined in lots of different ways. Lack of food places the body under stress, and this stress can cause further problems, without their being any cognitive involvement.

    Another problem is that there's no widespread acceptance of he boundaries of 'psychology'. To me, it seems that we have a poor understanding as to what good 'mental health' really is. So many terms can be taken to mean and justify different things.

    It's really difficult to discuss these topics without misunderstanding one another somewhat unless all sides have a sense of how these terms are being used by others, It seemed possible that you and bob were maybe using language slightly differently? I could be wrong, and I'm off to bed now. Sleep well everyone.
     
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  19. Bob

    Bob

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    First of all, we need to be aware that a 'CFS' diagnosis selects a heterogeneous cohort. People can also have 'chronic fatigue', without having CFS. I was talking about 'ME' and not 'chronic fatigue' or 'idiopathic fatigue' or CFS.

    ME, as defined by the ICC, excludes primary psychiatric and somatoform illnesses. And it lists an array of complex systemic physical symptoms. This is based on decades of research and expertise.

    There is plenty of evidence of immunological abnormalities, as per Lipkin's statement for example. Also, the nature of 'post-exertional malaise', suggests some sort of abnormal physiological process. There are plenty of examples of research which suggest an abnormal biological process. I agree that we don't yet have a reliable biomarker, which is unfortunate. But the Rituximab research suggests we might be heading in the right direction now.

    You raise an interesting issue about psychiatric illnesses having physical symptoms. Schizophrenia is classified as a psychiatric disease, but it clearly that has a biological cause, and physical symptoms. I wonder why that is classified as psychiatric, whilst ME and Parkinsons are classified as neurological? I think it's just an accident of history. ME is categorised by the WHO as a neurological disease.

    The psychiatric lobby try to portray ME as a psychological illness, that is caused/perpetuated by a 'maladaptive' fear or avoidance of exercise, leading to deconditioning. So they don't just portray ME as a psychiatric disease, but as an illness caused or perpetuated by some sort of personality disorder or maladaptive thought process. The trouble is that there is no evidence for this. The PACE Trial and the FINE Trial disproved the hypothesis.

    If the psychiatric lobby tried to claim that ME was a psychiatric disease, caused by biological processes, like schizophrenia and bipolar, then I wouldn't have quite such a problem with it, because at least they would still be advocating looking for biomedical treatments.


    That's not substantial evidence that ME is a stress-related illness. It's not even plain evidence. Especially taking all of the other evidence into account. Low vitamin B levels in ME patients, does not prove that ME is a psychiatric illness.


    Some people with chronic fatigue might have a stress-related illness. There are various different types of chronic fatiguing illnesses. Like you say, depression can also cause fatigue. But delayed-onset prolonged post-exertional malaise, suggests a biological process, and is one of the defining symptoms which separates chronic fatigue from ME.


    We don't yet know the cause, or exact physiological nature, of ME. But that doesn't mean there is no physical cause. If the cause of an illness is unknown, it's very easy to say it is related to stress, or it's psychological in nature. But that doesn't make it a fact, and it ignores all the research. But it also ignores the patients, and their obvious signs of a debilitating physical process.

    In the old days, they used to say an illness was related to evil spirits, or witchcraft, when they didn't know the cause.


    If you look at the ICC for ME, it lists a wide range of interesting symptoms:
    http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2011.02428.x/pdf

    And here is a list of research papers which indicate immunoligical abnormalities (see page 29):
    http://www.mecfs-vic.org.au/sites/www.mecfs-vic.org.au/files/Journal%20of%20IiME%20Vol%206%20Issue%201%20Screen.pdf


    I'm a bit tired, and I'm going to bed, but if anyone else wants to highlight any specific research which demonstrates an abnormal physiological process, then I think that would be very helpful.
     
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  20. Stukindawski

    Stukindawski

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    You know, there's a sincere risk of attempting and failing to win a pyrrhic PR victory of some kind. If a journalist writes antagonistic articles aimed at hundreds of thousands or, since it's the net and has a global audience, millions of people. You will find the wrong angry person, on the wrong the day, who will do something stupid. This isn't being an 'angry and irrational ME patient', it's being an 'angry and irrational human being'. Percentage wise it's definitely going to happen. Using that fractional percentage to promote the existence of 'criminally insane ME patients' isn't a particularly intricate device. In fact, it's fairly lacking in imagination.

    However, Pemberton has the conch. Just like, the SMC has the conch. Complaining about an inevitable small percentage of people (and while it's highly likely, I don't accept their existence out of hand since I've never seen a great deal of tangible evidence or heard or convictions or trials) is a waste of time. If you face the British at Agincourt when you only have one man with a twig, it doesn't matter how intricate your battle plan, you will lose. If ME advocates got to speak, got to write and had journalists address their concerns on a regular basis then the state of things would be much different. But it's not.

    I see people complaining about, who is and isn't and idiot, or who is and isn't a crank, and it's always the same people who are perceived in the exact same way by a great deal of others. (aside: I can't help thinking one side would love to paint Pemberton's sign on the other :p)

    Power is the only thing that matters here. Reason, truth, it's only in the eye of the beholder, and it's a bit rough if you can only get a couple of people to behold it. We exist in a community that witnesses fraud in broad daylight. The arguments are far too complex, when our truth is simple, we are physically sick and their treatments are not helping us.
     

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