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Looking to Interview Recovered ME/CFS Patients

Discussion in 'Active Clinical Studies' started by slayadragon, Sep 7, 2010.

  1. slayadragon

    slayadragon Senior Member

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    Hi All,

    I am currently working on a project to gather the stories of people who have recovered from moderate/severe, classic ME/CFS.

    Unfortunately, there arent many people who have recovered from this illness. It thus seems important that we learn from the few who have recovered.

    Ive spent the past three years gradually regaining my own health. Now that Im close to being really well, people ask me a lot of questions about my experience.

    I dont want to make it seem that I have the answers just based on my story though. So I want to find some more case studies.

    So far, the ones that Ive found have had a whole lot of similarities and a few interesting distinctions. I think its going to be a really interesting and meaningful project.

    Rich van Konynenberg has been helping me to find people. Hopefully some of you here will know some additional ones.

    Again, Im looking for people who were seriously ill with ME/CFS (fitting the Canadian Criteria). They dont have to be totally without any symptoms whatsoever or with limitless energy, but they should be well enough to be living an active, fairly normal life and report feeling good the majority of the time.

    Im going to be writing up each of the case studies (I used to be a journalist) and then putting them together with some general observations in an information packet. My inclination is to distribute it widely, free of charge, to doctors and to patients.

    Participants will have every opportunity to edit their own stories as they see fit, and to make comments on the general observations that I put together.

    If you know of anyone, would you please ask them to contact me or pass along their information?

    Thanks very much for your help.

    Best regards,

    Lisa Petrison
    Ph.D., Northwestern University

    lisapetrison at yahoo-dot-com
  2. jenbooks

    jenbooks Guest

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    A simple google search "cfs recoveries" yields many such stories already written up, though it can't hurt to write them up again or write up new ones.

    Recovery from Chronic Fatigue Syndrome
    The story of one person's recovery from Chronic Fatigue Syndrome (CFS)
    www.recoveryfromcfs.org/

    CFS Recovery: AMYGDALA RETRAINING: The Advanced ME/CFS Recovery ...
    This new treatment has been developed by Ashok Gupta, a well-known researcher and therapist in the field of ME/CFS, who has dedicated the last 10 years of ...
    www.cfsrecovery.com/

    CFS Recovery Stories - Recovering from Chronic Fatigue Syndrome
    Welcome to the CFS Recovery Stories Page! I have spent the past few years gathering as many stories I can find from people who have recovered from Chronic ...
    www.angelfire.com/stars/cfsrecovery

    Amazon.com: Recovery from CFS: 50 Personal Stories
    Recovery from CFS - 50 Personal Stories is a simple collection of recovery stories from people who have recovered from CFS/ME. Men, women and children from ...
    www.amazon.com › ... › Disorders & Diseases

    Physical and Psychological Recovery from CFS | CFIDS ...
    How CFS patient Margaret Fergusson increased her functional level from 15% to 70%.
    www.cfidsselfhelp.org/.../physical-and-psychological-recovery-cfs -

    ME/CFS Recovery: Energy Excellence Course for ME/CFS Recovery
    ME/CFS recovery courses, over 1000 people with ME/CFS and FMS successfully recovered at our UK Wales Clinic for ME/CFS recovery.
    www.fatigueanswers.com/me-cfs-recovery-courses.html

    Planet Thrive CFS Recovery
    by Nadine Saubers, R.N. | I don't EVER go to CFS forums because if I do and I mention recovery, the hostility directed at me is so over the top and ...
    planetthrive.com/category/experts/cfs-recovery

    CFS/ME Recovery Stories | Facebook
    Feb 2, 2010 ... Facebook is a social utility that connects people with friends and others who work, study and live around them. People use Facebook to keep ...
    www.facebook.com/group.php?gid=28491622681

    Etc etc etc
  3. glenp

    glenp "and this too shall pass"

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    Do you differentiate between those in remission and those that have relapsing remitting?
  4. slayadragon

    slayadragon Senior Member

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    I'm willing to consider anyone I can talk to in person.

    Thanks, Lisa
  5. jenbooks

    jenbooks Guest

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    Note: this post is in response to a message Lisa then deleted. I'm not sure why she deleted it, but I meant to quote it in my reply and pushed the wrong key. Here is the post:

    <<Thank you for contributing to my thread, Jen.

    I tried e-mailing a response to your own e-mail earlier today, but you wrote back to me and told me that you didn't want to converse with me personally or on any boards, and thus were deleting my note without reading it.

    That after 2000 e-mails in my boxes from you, over the past two years! And my having done nothing to you whatsoever except saying that I thought that maybe Kelly's house might have some mold in it when you asked me, and that I was going to continue educating people about mold whether you liked it or not.

    But I do appreciate your comments here. And good luck to you, of course.

    Best, Lisa>>


    -----

    Hi Lisa. I said I didn't want to discuss biotoxins anymore. I'm tired of it. Privately, publicly, on groups, etc. My point about zinc/magnesium/benzos and hbot in "sensory storms" was just about helpful interventions for autonomic dysfunction, not biotoxins.

    The world could be a scary place, to the point of dysfunction and dissociative behavior, if you're going to fear biotoxins when you wash your hands at a park, or drive through a state or part of the country. The whole world can seem to have bogeymans like a circus hall of mirrors. We have camped quite comfortably recently by a slow moving part of a river covered with algae, and no problem.

    Mold, especially indoors, is bad for me. I will always be glad you helped call that to my attention. But I've integrated that into my knowledge base a while back.

    But if you're a former journalist compiling stories, I thought I'd help out with all that's on the first two pages of google already out there, with the simple "cfs recoveries" search. Might as well read through those first. Maybe you can re-interview some of them. There's a motherlode of info out there already, and I suspect most would be glad to talk.
  6. slayadragon

    slayadragon Senior Member

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    For the sake of other people reading this thread, some cyanobacteria is perfectly benign. Some is extremely poisonous, even by CDC standards.

    Some mold is perfectly benign. Some is dangerous.

    Thank you again for your comments.

    Cheers, Lisa
  7. Sunshine

    Sunshine Senior Member

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    You can't 'recover' from an exogenous infectious retrovirus, however you can recover from a 'chronic fatigue' state, that isn't retroviral in origin.

    Caution should be taken in promoting 'recovered' people who have no diagnostic test to show they ever had a neuro immune disease that is now linked to an AIDS like virus.
    It could do untold damage to the fractal ME/CFS patient community. Not that this matters presumably.

    One caveat, is your article could back fire if the CDC/NIH announce ME/CFS label is kept and XMRV/MULV's are the causative agent. You'd effectively be creating an article on people who have 'recovered' from HIV, with no evidence of ever having HIV. Which may make the author look....uninformed, even if they do mean well and have people's best intentions at heart, of course.

    Mud sticks, and people judge others on their medical and scientific education when writing about medical disease, or lack of. In this exquisitely sensitive time for ME/CFS, I'd be careful to launch 'recovered' patients into the literal limelight, as the patients themselves could become a target for mockery in the very near future if/when a direct causative agent is shown. Perhaps do what you wish to do with no changes, yet consider inserting an important note about XMRV/MULV when considering your write up. Through what is happening as we speak in time, having an infectious incurable retroviral infection may become a requirement to have ME/CFS. If so, your interviewees may all be un intentional frauds due to having no diagnostic test for their ME/CFS that they recovered from.

    In other words, the diagnostic requirements may change very soon, even if you rush the article out is it worth being remembered for something that was proven utterly invalid by science, within 12 months? That would be akin to slaving away on a beautiful work of art that you put heart and soul into for a degree qualification and feel pride and a sense of achievement in, only to find out the reviewer of your work, is blind, and awards you with a grade F! Much to your understandable and rightful dismay and dissapointment.
  8. slayadragon

    slayadragon Senior Member

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    Those are good points, Sunshine.

    When I say "recovered," what I mean is "recovered my health." Meaning that the benefits of good health were lost to me, and that I have regained them.

    It is true that if you make an AIDS analogy though, someone with active AIDS wouldn't really recover from having AIDS.

    They might be able to drive the HIV virus into latency enough that they would have a cessation of their symptoms though. Conceivably, that might last indefinitely, even until they die of something totally unrelated years later.

    I'm thinking also about people with elevated liver enzymes and cirrhosis as a result of Hepatitis C. Their virus may go latent, so that it's not causing them any overt symptoms.

    I think that insofar as people have XMRV (or whatever we're calling it this week), this may be the best we're going to get. If we can drive the virus into latency and get to the point where we're living mostly normal lives, that's pretty good progress. A lot better than lying for 18-22 hours a day curled in a ball in a darkened room, which is where I was three years ago anyway.

    But you may be right that "recovered" is the wrong word.

    "Remission" may be better, except that that has a ring of having the disease totally have disappeared so that I don't have to do anything active to address it any more. Like a cancer patient.

    So far, the people I've encountered who've gotten well need to do a lot to stay well. They're making adjustments in their life. They're avoiding gluten or biotoxins, they're being careful not to overextend themselves, they're going to doctors for treatments. But apart from that, they're well. They're out of bed all day, working, socializing, getting errands done, traveling, living their lives. Not lying in bed in shrieking agony.

    I think it's worthwhile figuring out what's made that happen.

    If 7% of apparently healthy blood donors have XMRV, that means that it's possible to live a normal life even if people are XMRV+. Just like it's possible to live a normal life if people are HIV+ or Hepatitis C+. The virus is only part of the equation. Clearly it's an important part, and it may be that those who have already had it go active may have a hard time keeping symptoms at bay because of its presence in the "viral reservoirs." Likely we will need to be careful.

    But that's my whole point. Right now, people who improve sometimes aren't wholly sure why. And people who haven't improved have no idea how they might. If we look at people who have managed to improve - especially if they've done it systematically - then perhaps we can get a better sense of how to get the virus to go latent and stay that way.

    In my own case, Erik's telling me that staying away from toxic mold had kept him well for 12 years - and that he would get sick again if he were around it - gave me a clue that it might be an issue for me. I wasn't sure that it was relevant for me until I tried it myself, but it did seem worth trying.

    Erik was a member of the Incline Village cohort (the one tested in the Mikovits XMRV study), so he's clearly a case study of someone who by definition has the illness. It's harder, with other people, if they don't have the official Cheney/Peterson/Mikovits seal of approval on them. And if it is indeed possible to get the virus to go latent - and if the tests don't show XMRV when it is latent - then it's possible that the tests won't be helpful for this either.

    But I have to think that it's possible to know if someone has the illness, just by looking at the Canadian Criteria (which seem to me pretty good), their testing history (low NKC activation, high Rnase-L and LMW Rnase-L, and low suppressors are pretty definitional), and their case history. And those can be described in the cases.

    I'm not doing this to prove anything. I'm doing it as exploratory research, to see if my own experiences have any generalizability beyond just me and to open my mind up to other possibilities that I'd not thought of before. And perhaps other people will be able to formulate their own thoughts about what their patients might do, what sort of research they might pursue, or how they themselves might get well.

    Here's an example. Today I talked to someone who (like Erik) got sick near Lake Tahoe in the mid 1980s. She had all the same symptoms, had the same illness course, and all the same test results (4 feet of test results!) as the people in that cohort. I'm going to posit that she has the same disease.

    She went 20 years unable to work for more than short periods of time, not leaving the house, dysfunctional in all the ways that we know so well. Then she decided to try to get well. She spent $150,000 on various treatments and supplements and drugs, saw 70 doctors, spent every day for years researching different treatments on the Internet.

    In the end, the thing that turned it around for her was gluten. When she talks about gluten, it's like hearing myself talk about toxic mold. Even a speck of it was enough to do her in.

    Once she got the gluten idea in place, other things started to work for her. (She also says she got her house checked for toxic mold and that it was good, though of course I can't say from afar a) whether it actually is good or b) whether it mattered in her recovery.) At that point, she did all the same things that I did: she used antivirals, she detoxed using the Yasko/Rich van K approach. She cleaned up her life. She's super-careful about the gluten, because if she's not, she gets really sick again (with CFS type symptoms) right away.

    And she got her life back. She's working as a photographer at rock concerts, she works out every day, she's out of the house as much as she can be because she's sick of having spent so many years there. She says she's happy.

    Is this "recovered"? I dunno. It's better than the alternative. At least, I think so.

    But maybe if she'd had more information about other people who have recovered, she wouldn't have needed to spent that $150,000 to figure it out. The things that really helped her turned out not to be that expensive at all.

    I'm not trying to put people in the limelight. The people I've found who are better (formerly desperately sick with active ME/CFS, now actively living pretty normal lives) aren't looking for personal glory. They want their stories to be told, in the event that somebody else might benefit from them. And then they go do other things.

    Whether this project will turn out to be useful to anyone, I don't know. But I've personally learned a lot from talking to people and visiting them in their homes thus far, and so my hope is that talking to a few more will be even more enlightening. One I have the information and draw my own conclusions, I will share it with others. And then folks can do with it what they like.

    Is there a word that would work better for folks than "recovered"? I'm open to ideas.

    Best, Lisa
  9. SickOfSickness

    SickOfSickness Senior Member

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    Better words/phrases... their symptoms have abated, their pains have subsided, their level of functioning has been restored to within normal range. I think remission is a good word to use, people understand how it's such a huge change, but yet you're not completely "free", that there is a chance of recurrence.

    Thankfully a lot of "recovered" people do speak about it. Perhaps they are the ones who had "copycat" conditions in the first place? I would put more stock in the stories of ones who restored their life "somewhat" versus the ones who are very fine and healthy now. In other words, what Sunshine said.
  10. slayadragon

    slayadragon Senior Member

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    From Wikipedia:

    A cure or remission is the end of a medical condition. The term may refer specifically to a substance or procedure that ends the medical condition, such as a medication, a surgical operation, a change in lifestyle, or even a philosophical mindset that helps a person suffer. It may also refer to the state of being healed, or cured.

    Remission
    Remission is the state of absence of disease activity in patients with known chronic illness that cannot be cured. It is commonly used to refer to absence of active cancer or inflammatory bowel disease when these diseases are expected to manifest again in the future. A partial remission may be defined for cancer as 50% or greater reduction in the measurable parameters of tumor growth as may be found on physical examination, radiologic study, or by biomarker levels from a blood or urine test. A complete remission is defined as complete disappearance of all such manifestations of disease. Each disease or even clinical trial can have its own definition of a partial remission.

    Response - a partial reduction in symptom scores

    Recovery - a restoration of health or functioning

    Prevention is a way to avoid an injury, sickness, or disease in the first place, and generally it will not help someone who is already ill (though there are exceptions). For instance, many babies and young children are vaccinated against polio and other infectious diseases, which prevents them from contracting polio. But the vaccination does not work on patients who already have polio. A treatment or cure is applied after a medical problem has already started.

    Therapy treats a problem, and may or may not lead to its cure. In incurable conditions, a treatment ameliorates the medical condition, often only for as long as the treatment is continued or for a short while after treatment is ended. For example, there is no cure for AIDS, but treatments are available to slow down the harm done by HIV and extend the treated person's life. Treatments don't always work. For example, chemotherapy is a treatment for cancer, but it may not work for every patient. In easily cured forms of cancer, such as childhood leukemias, testicular cancer and Hodgkin lymphoma, cure rates may approach 90%.[7] In other forms, treatment may be essentially impossible. A treatment need not be successful in 100% of patients to be considered curative. A given treatment may permanently cure only a small number of patients; so long as those patients are cured, the treatment is considered curative.
  11. slayadragon

    slayadragon Senior Member

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    I guess what I mean here is "a restoration of functioning" - which is the definition of "recovery."

    I think that describes my condition.

    Remission says "the state of absence of disease activity."

    That doesn't describe how I feel, really. There's not an ABSENCE of disease or symptoms, it's just not interfering with the ability to live a fairly normal life.

    I guess that's the definition of 90 on the KPS. But most people don't know what that means.

    Strange how none of these words seem exactly right. I wonder why that is.

    Best, Lisa
  12. taniaaust1

    taniaaust1 Senior Member

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    Im another who wouldnt use the term recovery.. as that "restoration of health" may not at all last in our condition and may well be only a temporary thing hence may not be a actual restoration of health thou we may believe it to be so at the time. I had what i thought was a complete recovery for 2-3 years.. but it turned out to be just a remission as this illness came back!

    To get to that point where i was like healthy again... it was partly luck and also due to all the life changes I had to make to give my body more of an opportunity to become well.
  13. slayadragon

    slayadragon Senior Member

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    Do you feel like you're recovered again now, Taniaaust? Or am I misunderstanding?

    Thanks, Lisa
  14. Michael Dessin

    Michael Dessin Senior Member

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    To the poster a few back....You do not have to have XMRV or associated retro virus to have classic ME.

    In fact you can have true neurolgical ME without the retrovirus'
  15. margib

    margib Senior Member

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    Thanks, Mike, I have been getting so confused with all the new info about XMRV...
  16. Michael Dessin

    Michael Dessin Senior Member

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    No problem...hope your doing well!
  17. bakercape

    bakercape Senior Member

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    How

    can you know this for sure. I'm not saying you are wrong but how many people with ME have been tested for XMRV or MLV's? Not to mention I'm sure there are virus's we do not even know about. Defrietas virus etc..... as one example.

    Has there been a study on these new retroviruses testing an ME cohort? I just don't know how one can say they know anything for sure when it comes to ME or CFS when it comes to retroviruses when the test is still being certified and refined and an ME cohort has not been tested to my knowledge
  18. Julia Rachel

    Julia Rachel

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    This is a noble and worthwhile study. However, Until we know the subsets involved with CFS, I think the figures will be difficult to calculate, detect and decipher. Are we talking subset 1) with symptoms only: subset 2) EBV and possibly Lymes and/or subset 3) with Viral reactivation (HHV-6A, EBV and CMV) plus piggyback co-infections. There are at least 2 pools of patient populations that we know of. This study of yours sounds like a University Worthy study once subsets get defined and time elapses. We know that 1-3% of CFS patients recover spontaneously. I would be willing to submit data for your study based on my future research with Pediatrics and Military Personnel (per their consent) and it would be fantastic to get all Universities doing trial studies with CFS/CFIDS/XMRV on board as well. I think Collaboration is key here and in all scientific realms and that this project is a fantastic idea, worthy of obtaining this knowledge, but also a lengthy project and one specifically determined by checks and balances as required by scientific criteria. Count me in; but my figures will not be ready until 2012-2014. Blessings...Julia...PS....Once again...Great IDEA!
  19. MarxyGrouch

    MarxyGrouch *****

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    I think this is a pretty blanket statement that depends on so many unknowns. It may soon turn out that many of us have a disease that is CAUSED by a retrovirus. Therefore, anyone who does not have that retrovirus does not have the same disease. This does not mean they are not sick, it simply means they don't have the same disease.

    If (once) causality is shown, the real definition of the illness might become clearer. Patterns might emerge that were previously burried under the vague and amorphous definitions of ME/CFS. Until that time, in my view it is dangerous and harmful to present this disease as something that we can recover from with enough effort or miracle treatments or whatever, when many of us clearly cannot.
  20. slayadragon

    slayadragon Senior Member

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    This is what is called "exploratory research." It's designed to look at particular case studies to gather information, which then can be used for the development of theoretical models that can be tested.

    Thanks for your kind words!

    Best, Lisa

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