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!
New Exercise Study Brings Both Illumination and Questions
Simon McGrath looks at new objective evidence of abnormal response to exercise in ME/CFS patients, and the questions that researchers are still trying to answer ...
Discuss the article on the Forums.

Article: Dr. Friedberg Interview - Living Skillfully and Making a Difference With ME/

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Nov 19, 2010.

  1. andreamarie

    andreamarie Senior Member

    Messages:
    195
    Likes:
    2
    I have heard this before: forty four yrs ago I was dx with Crohn's. I had surgery to save my life and positive path slides. But the cause was a personality that couldn't handle grief and a passive mother. DUH! I'd been happy as a clam until then.
    Four yrs later the trends changed and I BECAME A TYPE A PERSONALITY AND THAT WAS WHY I HAD CROHN'S. I COULDN'T HANDLE STRESS AND PUSHED TOO HARD.
    At this point I did go to see a psychiatrist because I hoped he could sort things out and because I had real crises' in my life. Also, he had been a student of the great Hans Selye, who coined the word "stress." He told me the whole thing was nonsense but would try to help me live with a chronic illness.
    After being seriously ill again, having another serious crisis, i miraculously went into remission. But I developed still another personality type: I was overly dependent and passive. By now, it was getting ridiculous. Since I felt great, I didn't care.
    When the Crohn's and Colitis Foundation got things going in serious research, much like the WPI (except they were better at it politically) all of this psych, you can fix it stuff disappeared.
    We don't know what causes Crohn's but at least three genes have been identified, we know it's familial, and new treatments are used. Younger docs have no idea that it was once considered a personality disorder. Even if you were in remission you kept it a secret, because your boss would think you were unstable. You would be passed over for promotions, etc. I taught school and NOBODY knew until I got tenure at which point the school nurse told me she would never have thought I had a psych problem. I asked her "which one."
    I'm a child of the seventie's and meditate. It's a great thing to do, but I can't do it when I'm in a crash.
  2. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    435
    Raleigh, NC
    I have that book and I plan to read it - its another one my shelf. Its interesting that the one thing the Dubbo study did find in their study as people came down with CFS following different infections was increased cytokine levels early in the disorder. These were what, so far as they could tell, set off the problems. Of course, cytokines are also associated with the symptoms we suffer when we get colds - they are what cause those cold symptoms - not the bug itself.
  3. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    435
    Raleigh, NC
    I guess that's one way to have 'multiple personalities' :rolleyes::rolleyes:
  4. Marco

    Marco Old blackguard

    Messages:
    1,241
    Likes:
    886
    Near Cognac, France
    I can appreciate where he's coming from, take what works and stop trying to beat a disease that you can't beat. Fair enough.

    But what if he'd said - I was a type A personality and did all the things I wanted to do with no ill effects. I was such a type A personality I drove my car too fast with the result that one day I was involved in a serious car crash and suffered a punctured lung. While the surgeons did what they could there remained serious lung damage.

    I used to really enjoy running, competitively, as fast as I could. Now I can only play volleyball. When I try running I run out of breath very quickly and feel much worse.

    Looking back I can see now that my type A personality was to blame and now am able to manage my disabilty by taking a more balanced approach to life.

    No Doctor, you have a damaged lung. Your lung would be damaged if you had a type A personality, type B or no personality at all.

    Taking a more balanced approached to life now may help you to live more easily with your new restricted capabilties, but your personality didn't puncture your lung and meditation won't cure it.

    I'm all for using whatever techniques I can which help, including mindfulness. But lets not confuse coping strategies with the underlying disease.
  5. Recovery Soon

    Recovery Soon Senior Member

    Messages:
    380
    Likes:
    37
    That is comparing apples and oranges. Maybe there is no connection btw personality type and onset. However, it is entirely possible that running yourself ragged, which I and many others were doing prior to onset, compromised the immune system, and made us more vulnerable to some viral trigger or genetic predisposition.

    There's nothing controversial or insulting about that.
  6. Marco

    Marco Old blackguard

    Messages:
    1,241
    Likes:
    886
    Near Cognac, France
    Recovery soon.

    I'm neither insulted by what he said, nor do I find it controversial.

    Stress has been very much central to the hypotheses of ME/CFS for decades and frankly its been pretty much done to death.

    I just think he's been doing a little bit of post-hoc rationalising from a psychological perpective - as you would expect from a psychologist. I have done and still do the same myself. Was I running myself ragged, did I pick something up abroad, was it the vaccination prior to going abroad etc, the list could be endless.

    I think you need to distinguish though between running yourself ragged and enjoying it and being run ragged and not enjoying it. Many people engage in the same overactive behaviour all their lives with no ill effects.

    That's not to say that it isn't impossible that some genetic pre-disposition causes some people to tip over the edge. But its also plausible, and is more in alignment with scientific parsimony, that we (and he) were active, got sick and now can't be as active as we were before or would like to be.
  7. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    435
    Raleigh, NC
    For me its all a mystery. I was not pushing myself too hard when I got ill. The only thing I can think is that I was running quite a bit - but I was not a marathoner - I was running for the enjoyment of it. The pushing too hard aspect just does not fit in my case. Nor does the stress angle....

    I like the clarity of your last sentence - we (and he) were active, got sick and now can't be as active as we were before or would like to be. I don't know if we know much more than that. With the Dubbo study people who came down with CFS there were no correlations that I can remember with stress, depression, anxiety, etc. prior to them becoming ill but for some reason they came down with CFS following an infection and the rest of the group did not. The only thing they found was that group had responded to the infection with increased cytokine levels.
  8. andreamarie

    andreamarie Senior Member

    Messages:
    195
    Likes:
    2
    Cort, I also failed to mention that my mother developed multiple personalities too. Yrs before me there was a famous psychiatrist who said he could cure ulcerative colitis (Crohn's sister disease.) I think his name was Hahneman but I have to check. Two groups of people with corresponding ulcerative colitis were hospitalized and Dr. Hahneman worked with one. The mortality rate that Dr.Hahneman worked with (they also got the same meds) was MUCH higher than the group that got no psychotherapy, etc. My gastro at the time had been one of the participating docs and was devastated when some of his patients died. It took me three yrs of asking him to recommend a psychiatrist before he felt he found one that was "safe."
    I know a bit about cytokine levels, etc. They are all involved with my other autoimmune diseases. I choose not to comment on them because I feel my past history in this case is more important. Having Crohn's, Sjogren's, and interstitial cystitis makes me a "phenotype" for CFS.
    On a more humourous note (and God knows we need it) my mother was in the room when the poor resident described "dependent, passive mothers." She was 4'10", he was over 6 '. By the time she finished with him, he was sweating and shaking and apologizing. "No more cookies for you!" she said, as he ran from the room. She brought in homemade cookies every day and put them on my windowsil. I couldn't eat but she knew it would bring staff in.
  9. andreamarie

    andreamarie Senior Member

    Messages:
    195
    Likes:
    2
    I'd also like to add that the title of his book upsets me: 7 Proven Steps to More Energy and Less Pain

    There is very little "proven" in science and medicine. No matter how well he means and that he's a good guy, brilliant he's not. And this sort of thing is not helpful. I expect people will be told by friends and family that "there's a book."
    And when you use these words you can't backtrack and say, "Well, some people, etc.
  10. Recovery Soon

    Recovery Soon Senior Member

    Messages:
    380
    Likes:
    37
    Marco,

    I guess each person needs to define for themselves whether they were running themselves ragged.

    At the time of my own onset I was pushed to the max, and didnt realize it. As an example:

    I was very successful in a high profile career. I was mentally pushing myself to ridiculous extremes to keep climbing and climbing without end.
    The office environment was extremely toxic, and I did a very poor job of handling the negativity. In many ways I exacerbated it.
    I was in a romantic relationship with a coworker that we were hiding from the rest of the company- and it was going south while we were spending many hours working together in high level mutually dependent roles.
    In the hours I wasn't working, I was creatively freelancing at another job, putting great pressures on myself there as well.
    I was working out ridiculously hard in a boxing gym 90 minutes every morning- which left about 3-5 hours a night for sleep.
    I was involved in a painful and protracted federal lawsuit with a former family friend who had cheated myself and 2 relatives after trusting and working with him for 18 months every hour I was not at either job, or the gym- the lawsuit was ugly and extremely painful-. (In fact the week he received the subpoena the same week I got my sudden onset).
    That same week, I had dental surgery, where two titanium implants were surgically implanted in my jaw at once- essentially 2 surgeries in one day, because I didn't want to waste the time for two visits.

    At the time did I think I was overstretched? Probably Not- I was taking on the world. But in hindsight it is clear that I pushed myself well beyond normal bounds with an extremely unhealthy degree of negativity and perfectionism. I was constantly on edge.

    How does that correlate to my onset? Not exactly sure. But the timing would certainly seem to suggest some sort of connection.

    Especially when you consider that my case is anything but unique. It appears that many, far more than the regular population, had similar circumstances just prior to their sudden onset of CFS. Maybe it's all part of us some wild coincidence. But that doesn't seem likely to me.

    My own theory is that many of us push ourselves so hard that some genetic weak link finally breaks- The people who can push themselves indefinitely and don't get CFS, don't have that weak link.

    And/Or a significant Viral Trigger such as XMRV.
  11. I agree that meditation,removal of stress, pacing, positive thinking etc is important in keeping one at the glass half full, life style or even the journey towards normality. All good things, but the idea that we got sick because we were all stressed and have an A type personality I think is eronious. For many of us we were quietly enjoying life when we got a flu virus and never got better. In fact got so sick we were unable to look after ourselves let alone play volleyball! It was a slow slide of getting worse, this worsening happening apparently when we went out of our allotted amount of energy and we had a relpase which sent us even lower and less able to do things - for years - not days. I do think that those who are more fit have no idea how limited the very sick are - washing your teeth in the morning and brushing your hair in the afternoon is a days work. However, I did get better, ( I think it was the antiviral imunovir,( isoprinosine) and the pacing and meditation that did it) 100% normal and it was then,after 4 years of normaliuty, that stress caused me to have a big replapse of almost 2 years durations - so far - but I am doing all the above and am improving but house bound most of the time, use a mobility scooter outside. I am back on the imunovir but after 18 months I haven't had the improvement I had first time (it took 16 months to seem normal, no relapse after doing too much). But I'm sticking with it as the theory of it working on HIV retrovirus means it has the right sort of properties if I have XMRV. No tests for this in NZ yet. So antiviral plus the above is my hope for improvement.
  12. Dolphin

    Dolphin Senior Member

    Messages:
    6,590
    Likes:
    5,197
    On the general point of stress: lots of people in society are "stressed". Think of any medical student doing a four year degree - that's intense. Or the years following when they work long hours. But only a small percentage get ME/CFS. A lot of people seem to be in a relative constant state of stress - often over little things. I'm not saying stress didn't play a part in some of us getting ill but I don't think it is sufficient.

    I do feel after we get ill, it is important to manage stress levels.
  13. Snow Leopard

    Snow Leopard Senior Member

    Messages:
    2,261
    Likes:
    1,658
    Australia
    As I said, it is all very loosely associated with stress at best. Most of those findings have other explanations. The cortisol evidence inherently suggests low stress lifestyles, since the same reduction in cortisol is noted in healthy patients on days of relaxation for example.

    Stress might have been a contributing trigger in some cases, but I'm not convinced it plays a role in prolonging/maintaining the disease in a majority of patients.
  14. Enid

    Enid Senior Member

    Messages:
    3,309
    Likes:
    840
    UK
    Thanks Cort - very interesting - the stratagies used to live with it especially from a psychologist who could reason through self help, knowing the illness not understood fully yet and if anything like here when no one else could or would. Tried some of the strategies myself instinctively over my years and they have helped. But that's not to say that certain medicines/interventions are not very necessary at certain stages.
  15. Marty

    Marty Senior Member

    Messages:
    117
    Likes:
    17
    While all this is about how different people choose to deal with their symptoms, let's not confuse the symptom thread with the cure thread.

    There are thousands of psychology books that target all illnesses, and as was said above, there is nothing we have not heard before. Let's keep that on the symptom thread.

    What is unique to us is the science of virology, immunology, brain, etc. to discover the physiology of this disease. For a cure, rather than soothing ourselves, unless we get really MAD and FIGHT, the CDC will continue to tell the world we are lazy and crazy. It is a very thin line between talking about psychology for the symptoms and psychology for the cause. Manage your symptoms however you wish, but FIGHT LIKE CRAZY to get the government focused on the cause.

See more popular forum discussions.

Share This Page