Voicing my opinion about the psychological comment

Discussion in 'Fibromyalgia Main Forum' started by teller7, Nov 21, 2007.

  1. teller7

    teller7 New Member

    I've been on this board for about 4 years now. What I read the other day has been eating at me. I feel I have to express my opinion even if I get kicked off this board.

    The comment that this disease could be both physiological and psychological just infuriates me. I do believe that having ME/CFS can cause us to get depressed, who wouldn't if they were as sick as we all are and how badly we're treated by the medical community. It's the people like Simon Wessely and his cohorts who have set us back into the dark ages as far as research and treatment is concerned. When the medical community hears the word psychological they turn a deaf ear to all our physical problems and dismiss us as mentally ill.

    Three years ago my doctor sent me to a very good psychiatrist. I was in his office telling him step by step my problems and after about five minutes he stopped me. He said something very profound, I think. He said Mrs. Edwards you don't need me. You are depressed because you are physically ill, you're NOT ill because you are psychologically depressed.

    If the medical doctors felt the same way maybe something could be done for us a little faster. But with people like Wessely and others who spread the word psychological I truly believe it's like we're stuck in the mud and can't get out.

    We all are on this board for support and to feel like we're accepted into a community that understands our plight. And mainly so we don't feel like we're alone fighting this devastating disease.

    Yes stress of any kind can make us worse. That's becaue our central nervous system has been damaged not because we're mentally off. And everything in life causes stress of one kind or another. There's no escaping that part of life.

    I do NOT think this person who wrote this post has any idea what this disease really is. I don't care if this person has a degree in whatever. I think I will back off and stay away from here for awhile. I don't need this. We get enough of this from the doctors who, like I said before, jump on the word phychological and just turn their backs on us.

    And to Mikie. I respect you very much and I'm sorry if I have upset you with this post. You try so hard to keep this a safe haven for us. I just couldn't help expressing my opinion about this subject.


  2. jmcdelaney

    jmcdelaney New Member

    I had this exact debate with a Blue Cross nurse calling my house to offer "coping help". Only problem was her opinion was the exact opposite of your psychologist...infuriating. Still eats at me.

  3. Lichu3

    Lichu3 New Member

    Books and a degree only provide a foundation. Really good clinicians use their eyes and ears along with their brain.

    I second the poster who asked "Is it really THAT difficult for sufferers to accept these conditions as wholly physically-based?" If the community of sufferers cannot accept that these illnesses are physically-based entirely for some, how can we expect the outside medical/scientific community and general public to accept this?
    [This Message was Edited on 11/21/2007]
  4. Rafiki

    Rafiki New Member

    One of my fears is that the board will be taken over by a group of people with a specific point of view which I feel is damaging to all with ME/CFS.

    It is not my place to ask anything of you but, as someone who feels as you do, I ask that you consider staying or returning if you can do so without too much discomfort.

    I'm sure this board is read by researchers, psychologists, students, doc.s, marketers of snake oil, disbelieving family members...

    If those of us who understand that this is an illness like any other remove ourselves from the dialogue it will be very one sided and, I believe, dangerously misleading.

    I don't know how much of this I could take if I were a Brit. Not much, probably.

    Please remember that while there are members who will never agree with you, there are many who stand with you. I stand with you.

    Do what you need to do but every voice counts.

    In solidarity,

    PS Uhm, just looked at your profile. It seems you're one of those Oregonion Brits :~)

    [This Message was Edited on 11/21/2007]
  5. goodnitegracey

    goodnitegracey New Member

    I have to agree with you teller. The fact of the matter that we can not escape is the our brain affects our and our body affects our brain. I know for me that my psychological state became more and more shaken due to not knowing what was causing my pain. With the little research that I have done on reputable sites I have concluded that my problem is not psychological. We have to much of a chemical called substance P. Substance P is in our spinal chord. The spinal chord and the brain are constantly transmitting messages. The substance P sensitives the brain which causes the constant pain signals. Personally I am not on pain meds other than tylenol when needed. I know with time I will need pain meds with break through pain and flares. But if substance P is constantly sensitizing the brain then it would make sense that it gets progressively worse over time. Like adrenaline affects the heart over time. And I think that our brain starts delivering these messages to our body trying to figure out what is wrong. And the doctors are taught to look for signs and symptoms. Real hard proof evidence. And for me I was all over the board. I hurt here I hurt there. One didn't seem to cause or even be related to the other. So yeah the doc thinks something is wrong with you I don't know what it is maybe its psychological. And in all fairness there are psychological diagnosis for people who have pain that "floats" or "moves". So I agree that it is physiological that cause psychological issues due to stress, trauma, loss of satisfaction with life. Tab
  6. tansy

    tansy New Member

    and since my current GP started to take M.E. seriously he sees it that way too. He had the qualifications, had read the books and papers, but it took Dr Kerr's gene expression research to change how he judged his M.E. patients.

    He cannot do much for me Tx-wise though cos his hands are tied by NICE; their recommendations are based on the psychological rather than the physical.

    Our local council and social services know how difficult things are for us in the UK. Patients with M.E. are treated on a par with other physically disabled clients. Why? Because many years ago they were given the scientific evidence and a genuine specialist explained to them how it affected us. This evidence has been around for decades.

    My Dx was based on test results, physical exams, and clinical judgement; it was not a Dx of exclusion. This all happened years before Wessely et al started on their quest.

    If the theories on psychological causes keep taking precedence then it's assumed there is less need for biomedical research; no wonder progress has been hindered.

    TC, Tansy

    ps just read Rafiki's post and I concur with everything she has written.
    [This Message was Edited on 11/21/2007]
  7. tansy

    tansy New Member

    are read by the infamous UK psych(o)s and they comment about what they find along with their own interpretations. Needless to say it's a load of ......... Their illness beliefs are constantly challenged but they just carry on regardless or move the goalposts. Their "secondary gains" are not questioned.

    "I don't know how much of this I could take if I were a Brit. Not much, probably."

    It's dire here to be honest. The CDC have quoted the UK Tx centres as a model. Buyer Beware.

    TC, Tansy[This Message was Edited on 11/21/2007]
  8. Rafiki

    Rafiki New Member

    I read Andrew Weill (sp?) quoting: reputable British studies that support GET and CBT.

    He's far from being CDC but these British "studies" are creeping into the zeitgeist.

    For some very powerful and influential groups we represent two things -- for Pharma we represent a market which, as of now, means Anti-depressants and for Governments we represent a looming financial crisis as our numbers grow and those of us who have been ill for decades become more disabled.

    The various interest groups mobilizing against us have no intention of just being nice, no matter what they call their plans. The fact that the phrase "Just be nice." was used again and again seem painfully ironic to me.

    Stay strong!
  9. Rafiki

    Rafiki New Member

    As I appreciate you.

    You have no idea how much!

    peace out,

    PS After a much needed nap (coma) I realize I responded with a total non sequitor!

    But, I do appreciate you Kathy so I'll let it stand:~)

    [This Message was Edited on 11/22/2007]
  10. DMBaken

    DMBaken New Member


    I am a clinical psychologist and I have three members with ME/CFS. I work providing psychological support for people with cancer. I don't expect to heal their cancer but I do hope to make their journey a little less distressing. I personally believe that, like it was with stomach ulcers, it will soon become clear that ME/CFS is not psychologically caused, however I do believe that psychological principals can help with the journey.

    I also believe in the value of these discussions. I don't read these boards each day to hear what I already know and agree with. Through good discussion we can sharpen our ideas.

  11. musikmaker

    musikmaker New Member

    I so agree with you and all the others who responded. I have to admit I read the post you are referring to, closed the post and haven't logged on to the board until this moment. I was thinking I might not come back also.

    Through my own experience I know I get depressed but I get depressed when I am unable to do the things I used to be able to do PHYSICALLY.

    I have a physical illness that can impact my mental well being at times. I am not a mental case that made my physical body sick with this disease. Dang people......this does not help our cause to be acknowledge.
  12. Lichu3

    Lichu3 New Member

    As I wrote before, I don't think people with CFS have anything against psychology per se but more with the way it is being used as a sole therapy and abused as a cause for CFS.

    I experimented with CBT and found it didn't help me much -- my issues were all physical. My psychologist was a reasonable and supportive professional who did NOT push CBT as a means to getting better, just a way to cope with the emotions CFS can bring.
  13. Slayadragon

    Slayadragon New Member

    Hi Kathy,

    You know, I looked on the "biker chick's" bio page, and it said "account disabled."

    It used to be that when people were removed from the board, all their posts went with them.

    Some folks commented recently that good information is sometimes lost that way (if for no other reason than that all the threads that the person started are deleted in their entirety, includings responses from others).

    Perhaps this "account disabled" is a new way of removing people?

    Anyway, my understanding is that the moderators sometimes send private e-mails to individuals who are judged to have broken one or more of the board rules.

    My very strong advice to all here would be to follow the moderators' direction in such cases and absolutely positively not to engage in any sort of arguments with them about why their comments are wrong.

    Arguments with others on the board are generally tolerated, though posts are sometimes removed and private e-mails requesting refraint from certain types of postings are occasionally sent.

    Any arguing with moderators (whether on the board or through private e-mail) seems not to be tolerated at all, and I would hate to lose anyone!

    Just FYI, for ALL here.

    On another note, I think that you are doing a wonderful job with regard to supporting your daughter in a very wide variety of ways.

    An awfully lot of kids who get CFS at this young age become permanently messed up as a result of not getting proper understanding and help.

    Regardless of how well the Valcyte or other treatments work for your daughter, I think she will go on to have a good life.

    CFS is an awful disease to get at a young age, but having parents like you and Connie who help their kids to work around it as best they can seems to make all the difference.

    Best, Lisa
  14. Khalyal

    Khalyal New Member

    by the powers that be, here is where I stand. Right here, with you guys, on this issue.

    Normally, I stay out of the fray. The thing is, this should have never been a fray. This was simply a matter of someone(s) deciding that a differing opinion was a personal attack.

    If ever there was a time to come out of the shadows and defend what I believe to be right, this is it. I have always believed in picking my battles. This one saddens me to no end, but here I stand.

  15. Khalyal

    Khalyal New Member

    Thank you for your advocacy, for your daughter and for all of us. You are a gem. Count me in as far as standing united.

  16. teller7

    teller7 New Member

    Wow I didn't know there were so many who would agree with me about this subject. Thank you all from the bottom of my heart. I would love to stay here, but thought at the time I wrote my post that I was about the only one offended.

    And to Kathy thank you for asking me to stay. I don't know if I'm getting this right, but did I read it right that your daughter has CFS? How old is she? It breaks my heart when I hear about someone young getting this. I was 62 when I first got it and I CANNOT imagine a young person having to endure this stuff for so long. It DOES take your life away from you. My hubby keeps saying that this is not the way he wanted me to retire. I say I didn't plan it this way either.

    Also I do agree that we need to stay here for support for each other. Thank you for helping me change my mind.
  17. kyra07

    kyra07 New Member

    Please stay! I came across the previous thread only recently, as I was intrigued by another post that mentioned it. We are all allowed to have our own opinions, but I will admit I was surprised by the original post.

    I agree completely with what you said here (and what many said in the other thread)! Thank you for posting this thread. I know of others who started out at the psychologist, who said the same..."You're physically sick, not mentally ill...You don't need me, go see a doctor!" While psychological counceling can help some people trying to emotionally handle this disease (and maybe learn to work within one's envelope of energy), this is not a mental illness. It can help you cope, but isn't going to make you "better". Physiological has to be addressed.

    I had a reaction to an old post on another board when I was first diagnosed. A woman with CFIDS/FMS posted a querry about why our muscles and joints hurt so much and for so long after excercise (she was obviously high functioning, since she could excercise some). The trainer replied that she needed cognitive behavior therapy and berated another clinician's logical post regarding the physiology behind DOMS. Shocking this attitude exists, still...

    It is a stigma we all face with our family, friends, co-workers, strangers, doctors... Think that is why it is a sensitive issue. It was sad to see the psycholocial issue as a cause for this disorder on message boards. It's still so prevelant in the medical field, it puts my flight response into overdrive! Learning to cope with the disease is needed for some, as with many other diseases. A positive attitude helps with our health, of course! If one writes it off as a psychological issue causing the disease itself, then I think we're back peddling. A touchy issue... What research needs to focus on is the physiologial. Just my opinion...

    Please stay and keep posting! :)
    [This Message was Edited on 11/23/2007]
  18. Febricula

    Febricula New Member

    Thank you all for speaking up! The passion and commitment I see here makes me feel more optimistic that one day CFS will shed its stigma and be treated as the biological disease it is.

    I also want to add that I think that perhaps one of the differences in perspective may be between those who have CFS and those who have FM. I say this because there was a recent thread on trauma and abuse, and if I recall correctly, almost every person who participated had FM rather than CFS. It is my understanding that past trauma, especially in childhood, can rewire the brain for further susceptibility to chronic pain (although I could be wrong about this).

    I had always seen FM and CFS as being the same illness but with different expressions and intensities. But now I am wondering if perhaps they shouldn't be lumped together at all. I think studies have shown that psychiatric disorders and past abuse are no more common in CFS than they are in healthy populations, and certainly the symptoms and treatment are not the same as what is prescribed for FM. CFS patients aren't prescribed exercise and pain medication, for example, and they seem to be less helped by vitamin supplementation (although that's not going to stop me from continuing to take my vitamins!)

    These are all vague impressions and generalizations, however, and I welcome other people to correct me. I am very leery about assigning a psychological explanation to *any* illness, but the insistence among primarily FM patients that past trauma and stress must be accounted for leads me to suggest that perhaps the real difference is that we suffer from different diseases?

    Aside from this issue, I am wondering if another difference is between those who had very bad medical experiences and those who did not. As much as I try not to take these debates personally, I still think there is something hurtful about people who have decent medical care brushing aside the concerns of people who for years were shunted to psychiatrists and blamed for their illness. If we’re all in this together and need to support each other, then surely we want for everyone else to have the best medical treatment possible. To me, shrugging one’s shoulders and dismissing the problems caused by psychologising the illness just because it doesn’t affect you personally doesn’t seem very supportive or caring at all.

    Look forward to other people's thoughts on all this.

    [This Message was Edited on 11/23/2007]
    [This Message was Edited on 11/23/2007]
  19. Khalyal

    Khalyal New Member

    When I was first diagnosed, my diagnosis was FM. The rheumy that diagnosed me wasn't very familiar with either FM or CFS, and later changed my diagnosis to FM/CFS because I have symptoms of both.

    Many doctors and a lot of self-educating later, here's what I believe...

    FM is a syndrome that is defined by a set of symptoms - muscle aches, tender points, fatigue, etc. FM often comes on slowly, rather than overnight like CFS seems to. FM can have a lot of causes. I don't want to debate what possible causes those are. But for me, I believe FM is a result of my CFS. I believe my CFS came first.

    CFS, however, has definite biological causes. Most CFSers can remember a definitive crash - a bad flu, EBV, or something along those lines, that they never quite recovered from.

    I think it's a mistake to combine the two. I think it has led to a lot of confusing conversations on this board. CFS has a definite history, a biological source. Can FM be caused by psychostress? I dunno. In my case I'd have to say no, but for others, I'll keep my mind open on that one. Can CFS be caused by stress? Heck and double heck, NO.

    While I love the fact that we can talk about both diseases on this board, since many of us suffer from both, I think we need to be much more careful about realizing which disease we are talking about before we jump in and oppose chemistry and biology.

    This is my opinion and I will take responsibility for it. I am certainly open to being corrected if I am wrong.

  20. Febricula

    Febricula New Member

    This is very helpful! The idea that FM is a condition that can arise out of a lot of different factors (CFS being one of them) makes a lot of sense to me.

    And I'm sorry you have both FM and CFS - the pain from fibro really sounds awful.

    *hugs right back* :)