1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Part 2: Brain Cells Making us Sick? Messed up microglia could be driving symptoms
Simon McGrath looks at theories that microglia, the brain's immune cells, might be overactive and driving the symptoms of ME/CFS and fibromyalgia.
Discuss the article on the Forums.

Please post here if you're a medic who thinks CFS is primarily psychological!

Discussion in 'General ME/CFS News' started by Esther12, Mar 26, 2010.

Thread Status:
Not open for further replies.
  1. Angela Kennedy

    Angela Kennedy *****

    Messages:
    1,026
    Likes:
    152
    Essex, UK
    Hi Jace

    I'm really not 'wired' - I don't think anyone else is either. I'm afraid I'm an atheist as well, and have serious concerns with the idea of being exhorted to 'focus on the positive' (I've just read Barbara Ehrenreich's Smile or Die, which may have something to do with that).

    No offence intended- but I think sometimes problems arise and they have to be dealt with, in all areas of life. Sometimes that means making objections and taking part in arguments. We are talking about some very difficult issues here, some of which are fundamental to ME/CFS politics and how patients are being treated.
  2. Adam

    Adam *****

    Messages:
    495
    Likes:
    1
    Sheffield UK
    I don't know if any UK members watch the TV programme Embarassing Bodies? C4's slightly embarassing 'health' show aimed supposedly at getting people with embarassing aliments/complaints etc. to come forward and discuss them/reveal their malfunctioning body parts on TV!

    One episode centred around bowel problems/wind. Of course they made light of it by employing lots of fart gags, but of course, there was a serious side to it.

    They featured this poor woman who had apparently been thoroughly investigated for bowel cancer/inflammatory bowel conditions had been given a diagnosis of IBS. She met the programmes Doctors ans was told all was not lost. You do not have to put up with this troublesome/painful EMBARASSING condition, oh no, help is at hand. We can treat this.

    You guessed it, with...

    PSYCHOBABBLE.

    Or in this case hypnotherapy delivered by some NHS underling after a 10 week training course (probably), which included several sessions of Gut Therapy or Gut focussing, I think they called it.

    I know, I know, you're thinking what I'm thinking aren't you?

    Aren't you?

    Anyway, when interviewed (a few weeks later) the poor sod said she had been practising the gut focus and that yes she did think she had seen an easing of the symptoms.

    Hmmm.

    Not very scientific. Then again, head therapy rarely is.

    What really struck me about this ludicrous 'treatment' was the fact that the patient was being made to feel responsible for her gut symptoms.

    For goodness sake woman, get a grip will you! It's your fault. Can't you just control you bowels for one second. No, you don't have anything physically wrong with you and we've already wasted precious resources doing tests and investigations when there's clearly nothing wrong with you.

    Doctors - hang your heads in shame.
  3. leaves

    leaves Senior Member

    Messages:
    1,193
    Likes:
    15
    I am reading through this thread and I must say that I find the tone of the conversation very aggressive and intolerant. Is this really necessary? We are all patients here, living in a hostile world in dire need for a safe, tolerant and supportive haven where we are accepted as we are. Let's make sure this forum stays that place.
  4. alphahusky

    alphahusky

    Messages:
    71
    Likes:
    0
    Tired?

    Tired? I would love to be "tired." The nature of the "tiredness" in ME/CFS is so far beyond that, it is almost useless to explain to someone who persists in using that word. This is beyond hitting-the-wall exhaustion. If I am lucky enough to sleep, even way back when I had hypersomnia with this disease, I still wake up feeling like I haven't slept, and I've gone a few rounds boxing and am quite clearly losing. I still feel like it's been 25 years since I slept- and every night in between I feel like I must have been up running all night but yet, somehow, I'm still right in my bed where I started out. No matter the amount of sleep- and admittedly, hypersomnia is two decades in my past now- my brain always feels like it used to be a sophisticated piece of electronic equipment that someone dumped in a full sink. In the mornings in particular, it is difficult to gather a coherent thought. My adrenal glands are constantly shooting me full of adrenalin which doesn't seem to affect any part of me but my heart rate, though it gives my brain that certain "panic attack" feeling while not a true panic attack. It never clarifies my thoughts or gives me the energy to do anything with it. I vaguely recall before this illness that "adrenalin rushes" could be fun things. Now the stuff just runs through my system, makes me shake and my already elevated heart rate shoot through the roof, yet there seems to be no benefit. They leave me further exhausted and yet, unable to sleep.

    "Tired" just can't begin to describe this disease. Let alone, "often tired." Those who insist this is psychogenic do not seem to understand that. I cannot go back and read this entire thread, so I am asking here- do you have any experience at all with this disease? I know that no one who has experienced this for 6 months or more would consider how they feel "often tired." That experience is long in my past, and associated with doing things, perhaps even mental fatigue, that was relieved by rest or eating or "taking a day off."

    I have no idea why you started this thread. Do not those with the psychogenic origin POV regarding this disease have more than enough forums in which to ram their opinions down the public's throat?
  5. Gerwyn

    Gerwyn Guest

    I started the following on another thread.on reflection however I feel that it belongs here



    Join Date
    Jan 2010
    Location
    wales
    Posts
    862

    Default WHAT PSYCHIATRISTS REALLY THINK ABOUT PATIENTS WITH ME cfs THE TRUTH

    I will kick off with two quotes

    Proffessor Anthony Davies Institute of psychiatry(wesselly school)

    "A diagnosis of a depressive illness would be appropiate.Unfortunately this is not good enough for the patients"

    (Post Viral fatigue syndrome and Psychiatry.British Medical bulletin.1991:47:4:966-988)

    "Though disordered and persisting viral infection have recently attracted attention,it is important that immunologists do not deflect attention away from the wider(ie psychiatric) aspects of the chronic fatigue/post viral syndrome"

    Myalgic encephalomyelitis or what? Anthony Davies,simon Wesselly,Anthony Pelosi.Lancet1988:July9,
    100-101

    Anyone fancy asking these along to the forum for a debate?
  6. starryeyes

    starryeyes Senior Member

    Messages:
    1,513
    Likes:
    4
    Bay Area, California
    Bravo and brilliant Maarten!
  7. Adam

    Adam *****

    Messages:
    495
    Likes:
    1
    Sheffield UK
    I'll add brave as well.
  8. leaves

    leaves Senior Member

    Messages:
    1,193
    Likes:
    15
    Hello Maarten,

    Summarizing...In your email you state that you are who you say you are but some are not whom they say they are, what is more they are not patients, or at the very least patients with psychological issues.

    I have no idea whom you suggest to be in this masquerade, and i am also not very sympathetic towards hidden accusations, but this is besides the point.

    The point is that everyone on this forum deserves respectful treatment, EVEN those with psychological issues (for what its worth, I have yet to meet the first person that is without psychological issues) and EVEN those that have identity issues and enjoy spending their time and energy in a forum representing someone they are not (I predict few if any people are that way).

    All opinions should be considered, also those of the brave that have opinions that differ from the majority. These people put themselves in a very vulnerable situation and often times help us to improve our assumptions and premises. We don't all have to agree. Homogeneity, be gone.
  9. Esther12

    Esther12 Senior Member

    Messages:
    5,268
    Likes:
    5,475
    Bit of a long one here. Sorry if there are typos or formatting problems.

    Rather than these vague complaints of misrepresentation, can you go back, find the quotes, and point out exactly what you mean. I tried to do that recently, collecting all of the relevant posts together, quoting them in full, and going through them.

    Your final paragraph seems to be a complaint that my replies are too mocking the way youve phrased this complaint rather undermines your ability to take the high-ground here. You seem to think that you should be able to take pot-shots at others, yet its terribly unfair or them to reply in kind.

    You never replied to post 179 either.


    I dont normally like to pick up others spelling/grammar/language use in a discussion like this, not least because mine can be so weak too but I really think its a bit of a problem with your posts, especially as you seem keen to engage in a debate over rather minor linguistic technicalities and think that Im disingenuously misinterpreting you. A few times now Ive spent some time typing an explanation as to why Ive interpreted your posts in a certain way, only to have you say no, but not explain your own alternative interpretation.

    I also think wed be able to progress much more quickly if you were to use more direct quotations of the text youre discussing. Youve complained about me not doing this enough, and using post numbers instead, but you seem to not be doing either.

    Yes it is check post 166: This is a trivial point I understood what you were trying to say but thought its expression was slightly confused. If you still disagree , can you post the quotes and post numbers with an explanation as to why.

    I can barely understand this. Normally I would struggle by, but it would be greatly appreciated if you could try to write a bit more clearly. Could you also try to reply with a more precise explanation as to where my interpretation went wrong? Theres nothing in your reply that would give me any clue as to where we disagree.

    Where do these speculations part from your intended meaning? I do not see how they could do so. They are not speculations about what you meant, they are explanations as to what you said, and why it was rather clumsily expressed.

    Would you be able to read your posts through and see if you can spot any of the mistakes? Is English your first language? You sometimes use it in a rather unusual manner. Im dyslexic, so know that it can be a pain to communicate with the written word, but it would be great if you could iron out some of the worst mistakes in your posts.

    Would you be able to provide the quotes of what you said and my interpretation, and then explain where I went wrong? This comment is a bit vague, and doesnt really allow me to identify where we disagree.

    Lets trace this back.

    I originally said (rather casually, as an aside ,and not realising it would lead to this prolonged debate.

    You then replied
  10. Esther12

    Esther12 Senior Member

    Messages:
    5,268
    Likes:
    5,475
    Lets trace this back again. I began the discussion of the benefits of free speech, debate and discussion as an antidote to propaganda in post 162 (note that I mention all three):

    You only mention free debate and discussion, not free speech, but you do not admit that the totalitarian regimes you had cited did use a restriction of free speech which, unless Cort goes barmy, is unlikely to be reflected upon these forums. You do seem to think that the Nazi and Communist states encouraged free debate and discussion, which strikes me as slightly peculiar.

    I then replied, continuing our conversation, and reverting to my preferred terminology, which includes references to free speech.

    You then seemed irritated that I had not adopted your terminology:

    I pointed out that I started the discussion, and that my original post on the topic included a reference to free speech, so it is hardly unfair of me to continue referring to it.

    You now think I’ve ‘ascribed meaning contrary to your original statement’ when really I’ve just been trying to maintain my original point.

    Really, this whole discussion seems slightly surreal. You seem to think that debate and discussion was encouraged, because it would allow the authorities to identifying and punish those promoting ideas they were opposed to. To me, this would not be a system which could be classed as encouraging free debate and discussion – the punishments rather taking away from the important ‘free’ element.

    It would be rather more helpful if you pointed out precisely what they were. This vague references are rather difficult to provide any sort of meaningful answer to.

    Here we can present whatever facts we choose though (I’m still waiting for the medical paper you promised) – so a plausible but factually incorrect argument can be rebutted.



    Thank you for the comments and kind words from others. I’m afraid this post was a bit mammoth, so will not be able to reply to you all now. Thanks.
  11. Esther12

    Esther12 Senior Member

    Messages:
    5,268
    Likes:
    5,475
    Actually - I've got to reply to this:

    Do you think I said The only problem CFS patients have is that they sometimes feel a bit tired? I did not, but youre almost acting as if I did.

    If you were to say that cancer patients often get tired, that would not mean that you were saying the only thing wrong with cancer patients is that they sometimes get tired it wouldnt be a denial of their tumours!

    I and my partner have both been seriously ill for about eight years. We are often tired. Far too tired to be able to work, and often too tired to leave the house. We do not love being tired its pretty rubbish. For you to claim that you would love to be tired seems far more insulting than anything I have said.
  12. Gerwyn

    Gerwyn Guest

    more from our open minded psychiatrists

    Psychiatric management of PVFS. M Sharpe. British Medical Bulletin 1991:47:4:989-1005

    “Psychiatric assessment distinguished factors that perpetuate the condition from those that may have precipitated it. Treatments are targeted at perpetuating factors."

    “To exclude (patients with a psychiatric diagnosis) is practically restrictive"

    “Psychiatric management may be defined as the assessment and treatment of the mentally ill"

    More from Dr Sharpe

    Multiple perpetuating factors may operate (and) the following have been suggested in CFS:

    “Infection: viral infection is of theoretical interest but of minor importance in managing established cases"

    “Immune dysfunction: the possibility that immune function is impaired by psychosocial factors and may be improved by psychiatric treatment is a tantalising possibility"

    “Other physiological factors: Several physiological factors may perpetuate symptoms. These include the consequences of inactivity and hyperventilation. "

    “Psychiatric disorder: Syndromes conventionally termed “psychiatric” have been shown to occur in the majority of patients with CFS. Extensive physical investigation is unlikely to be fruitful and should be limited"

    “Other psychological factors: Personality factors (attitudes, beliefs and thoughts) and behaviour have been shown to perpetuate disability. These unhelpful or “dysfunctional” cognitions include the beliefs that recovery from the illness is not under personal control or that the illness is poorly understood. It has been suggested that dysfunctional cognitions and maladaptive behaviour interact with the physiological factors and psychiatric illness to perpetuate the disability that comprises CFS. Increasing physical deconditioning…may lead to helplessness"

    anyone feel its worth debating with this man?
  13. Adam

    Adam *****

    Messages:
    495
    Likes:
    1
    Sheffield UK
    She said - he said

    I said. He said. We said, no they said - did they say that...no, I said it, but all the same he said that I said that somebody else said...what was they said?...oh I know...it was...it was that I didn't say what you said I said...anyway, I think that's what it was...hmm, or was it? no.

    Quote
    Unquote
    Quote
    Unquote
    Quote
    Unquote

    I did not say...wait

    He said what I said was that what he said was well...what everyone was saying...he said that.

    However... I know for sure I did not say that.

    I was being misquoted.

    And I can prove it because he said

    blah blah blah

    and I did not say

    blah blah blah I actually said...

    and here's the quote


    :Retro tongue::Retro tongue::Retro tongue::Retro tongue::Retro tongue::Retro tongue::Retro tongue:
  14. Koan

    Koan Be the change.

    Messages:
    2,598
    Likes:
    55
  15. V99

    V99 *****

    Messages:
    1,471
    Likes:
    1
    UK
    Can I add :tear:
  16. Lily

    Lily *Believe*

    Messages:
    665
    Likes:
    4
    Instead of spending time daily on my usual brain game sites, I just come to this thread for a bit and try to follow a page or two. Great exercise, but in general it really is too advanced for my abilities. I must adhere to strict timelines otherwise it induces nausea.:worried:Seriously:(
  17. starryeyes

    starryeyes Senior Member

    Messages:
    1,513
    Likes:
    4
    Bay Area, California
    :tear: lily and adam.
  18. Min

    Min Senior Member

    Messages:
    1,193
    Likes:
    1,212
    UK
    ah thanks ,now I understand it, I thought it was just one person (would love to know who she really is) deliberately winding sick people up in order to attention seek
  19. Mithriel

    Mithriel Senior Member

    Messages:
    564
    Likes:
    40
    Scotland
    Right to the point Min, let's go and do something more interesting.

    Mithriel
  20. alphahusky

    alphahusky

    Messages:
    71
    Likes:
    0
    Okay, but I think I was pretty clear in making the distinction

    I think I plainly pointed out that "tired" is a very inaccurate way to describe the level of exhaustion most ME/CFS patients experience. That's why you are getting so many negative responses to using the word. Do you not feel it is a bit trivializing of the disease to continually label a symptom as "being tired?" I doubt most cancer patients would sigh with a smile and wave someone off, saying, "Oh, I'm tired today," when asked if they feel like spending the day doing some activity. As the family member of several people who died of cancer, while they have used the word "tired," it's rarely the way they describe how they feel as they get into those last days. More like, "exhausted." And that was my point.

    I don't know if you said this is our only problem. But you said, "Tired patients" and "often tired," two phrases that are often used to brush us off. Have you no experience with the psychologizers out there? This is a legit question. Perhaps you aren't up on the politics going on here. But I don't use the phrase "tired" often. That's why I said I'd love to be tired. And then I explained why- because tired is not at all how I experience the "fatigue" in this disease. Tired, to me, is a welcome feeling that usually precedes really refreshing sleep, experienced as something that can be easily gotten rid of by some rest. "Tired" just does not describe the feeling of exhaustion we feel. Surely, as a sufferer, you have to agree that "being tired" just is not an accurate description, and that it is a poor descriptor of the level of, okay, "tiredness" that we experience.

    You find me trying to describe the depth of the exhaustion we feel, and compairing it to "tiredness," a feeling I think I clearly described as something that can easily be solved by healthy people, insulting? Okay! I was trying to clarify for you why so many were put off by the use of that particular word. Since I've had this disease for 25 1/2 years, and perhaps have been far more involved in the politics and experienced the deniers of this disease for much longer, I would never use the word "tired," nor would I say, "often tired." I would use the phrase "exhausted" (I don't used "fatigued" either- it trivializes the level of beyond-the-wall, unbelievable physical and mental exhaustion that doesn't leave no matter what steps you take to battle it back).

    Perhaps you are feeling like others are too "hung up" on that word. Maybe that's why your post to me is so dismissive. I could hardly have been clearer. I would love to be tired, because tired is something that can be gotten rid of by a night of sleep, some rest, eating- even sometimes watching a movie. I vaguely remember "tired." There is no way in this world that what I experience 24-7, for more than a quarter of a century right now, is anything like "tired." Particularly with my extreme difficulties with sleep. I remember tired as something almost pleasant that preceded sleep.

    That is quite clearly what I meant. If anyone else is "insulted" by my very, very clear descriptions, I'd be surprised.

    And thank you for updating me on the fact that you are a patient, and that your partner is as well. I do not have the energy to go back and read all these posts. It clarifies for me that I'm speaking with someone who should clearly understand the difference between the entirely wiped out, life destroying "fatigue" we experience, and being "often tired." I was not trying to imply you were dismissing the entire disease as just "being tired." But I was curious. Your response cleared that up for me.
Thread Status:
Not open for further replies.

See more popular forum discussions.

Share This Page