Despite Our Losses, People with ME/CFS Want More
We've been cheated by ME/CFS and we all know it. That's a no-brainer, if you'll pardon the cognitive pun. And loss didn't just result from the bad things that befell us. It also encompasses the good things that just ... never came. The absence of bounty. Of wholeness. Of peace.
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How to build a SENSE OF URGENCY

Discussion in 'Action Alerts and Advocacy' started by parvofighter, Jun 21, 2010.

  1. parvofighter

    parvofighter Senior Member

    Recently, a forum member wrote to me:
    It seems to me that you think that if XMRV doesn't work out then we or you are doomed. I don't feel that way and I'm sorry that you're in that position.
    Other than cataloguing this comment under "callous and unempathetic", my immediate reaction was: ????? I've had strokes, and biopsy-confirmed viral heart disease associated with my ME/CFS. My vasculitis symptoms resulting from my opportunistic parvovirus B19 infection have been proven on heart biopsy/PCR/immunohistochemistry. I know how real my health risks are. And I'm under 50.

    But I've only had this disease for 11 years. What about the scores of patients on this forum who have had this disease for 20, 30 years. Who are showing gamma t-cell clonal rearrangements, or outright lymphomas? Who have regular angina? Shortness of breath? Frothy bubbles coming from their lungs? Foot drop and facial droop, and other signs of stroke? The stark reality is that if XMRV doesn't work out - and if no other viable treatment comes within the next 2,3,5, 10 years - many of us could indeed be doomed. And what about the people who have lost 2 or 3 decades from their lives, and are facing old age... isn't a sense of urgency understandable?

    Missing: A sense of urgency
    So that's how I put my finger on it. This person doesn't share a Sense of Urgency on the need by legions of ME/CFS patients for urgently rapid, effective treatment of this neuro-immune disease. I wonder if this might be one reason why some patients don't see eye-to-eye on various issues. Could discussion on a Sense of Urgency bring about some rapprochement in attitudes, so that we advocate with a stronger, more effective voice for our community?

    Now firstly, I don't want to incite a pi$$ing match on who is sicker than whom. But I am laying down a challenge for those of us blessed with better health, to empathize with the fact that early mortality is a known finding in this disease. Just check out the early mortality threads:

    It is clear that there may be many subsets of "CFS". And there may be differing senses of urgency among these subsets. Does that invalidate a Sense of Urgency for those who are desperately ill? And might it be wise - indeed prescient - for milder cases of ME to invest in the possibility of a sicker future - or at the very least to cultivate some empathy - by understanding this issue?

    So this raises a few questions:

    1. Why should patients/advocates/researchers/policy makers have a Sense of Urgency in this quest for effective biomedical diagnostics/treatments and/or a cure for ME/CFS?
    2. When the media, advocates, or other stakeholders don't have a Sense of Urgency:
      • What are the consequences?
      • What can patients constructively do?
    3. How can we provide a nuanced approach to Sense of Urgency in the various potential subgroups of ME/CFS, so that we don't go overboard with one end of the spectrum, while respecting that mortal risks of ME can be very real at the other end?
    Bottom line, I would welcome thoughtful comments on whether it is possible for us to arrive at some intelligent, empathetic, common ground, so that as a group we understand that some patients with ME/CFS have dire Sense of Urgency - for good, fact-based reason. And this Sense of Urgency creates a critical lens, and context, which guides our approach to advocacy.

    If there is strength in numbers, it worries me that some advocates don't "get" the sense of urgency issue. How can we help them to help our movement as a whole? How can we create intelligent cooperation rather than unnecessary conflict on this issue?


    P.S. One thing I would ask: this thread is not intended to spark debate on whether the neuro-immune disease ME/CFS is psychogenic. If you believe it is, I would ask that you start your own thread up elsewhere.
  2. V99


    Thank you parvo, great post.

    I'm not as sick as parvo, or many people here. Luckily I have had some improvement over the last 17 years, but I am sick of being like this and want actual treatments. If they don't take the Lynn Gilderdale's & Sophia Mirza's of this world seriously, then I can forget it. More importantly, the most severely cannot wait, being like that constantly is torture. So from my perspective, when an explanation as good as this one (it fits) comes along, we don't want to see the research draged out and slowed down, like so many possible research avenues in ME have been. We cannot wait another minute, it needs to change today, if it can. Those patients need effective medicines now!
  3. Marco

    Marco Grrrrrrr!

    Near Cognac, France
    I wholeheartedly agree that a sense of urgency is sadly lacking and that the consequences are differ depending on the level of illness and duration.

    Some of us are currently facing life threatening 'complications' while others of us, less seriously affected at present have nevertheless loss decades and face an uncertain future. Its also uncertain how many of us will go on to develop more serious issues.

    My own feeling is that the lack of sense of urgency is due to two things.

    Firstly the general public perception that ME/CFS is about fatigue and little more. The reasons for this perception have been discussed ad nauseum.

    Contrast this with the oft quoted 4000-5000 papers published that show pathology in ME/CFS. How can the science be continually ignored?

    Secondly, I believe a large part of the problem is due to the stop start nature of the genuine research being carried out with too many researchers looking for the causal pathogen, finding something, publishing their results only for others to refute their findings or suggest another pathogen. Hopes of validation and treatment are continually raised and dashed while the wider medical community probably takes a weary attitude of "here we go again". Nothing is apparently definitively proven and the lack of proof is taken as absence of pathology.

    Check out the paper by Twisk and Maes in the Latest Research section that, even after heavy editing, clearly sets out that ME/CFS is clearly a disease involving dysfunction of the immune system.

    Regardless of the initial pathogen, or other trigger, the simple fact, once acknowledged that ME/CFS is an immune disease should be a game changer.

    I'm not saying researchers should stop looking for the trigger, or that XMRV may not be the key, but much could be gained by rigorously documenting the exact pattern of immune dysfunction and the likely consequences on health.

    Patients could then demand to be treated with respect and therapies developed without needing to prove that X,Yor Z was the intial trigger. Of course, there is always the possibility that the complete cure requires X,Y or Z to be identified and treated, but clarifying and disseminating the details of the immune dysfunction might just put and end to the old arguments and encourage more researchers into an area previously seen as 'controversial'.
  4. ukxmrv

    ukxmrv Senior Member

    I am very grateful to Parvo for bringing up this topic. Been ill since I was a young university student. Sometimes I show this to people to get across what has happened to me.

    Losses of my 20's - loss of education, unable to buy my own home, unable to drive a car, unable to travel as my peers, unable to meet partners, unable to enjoy music or theatre, unable to start building a career

    Losses of my 30's - unable to have children, unable to buy a home, unable to work on a career, friends start to disappear

    Losses of my 40's - unable to build a career, start of menopause and a new round of symptoms, start of aging, parents start to die, few friends left and isolated

    Total losses, low mobility, unable to drive, unable to support myself, unable to socialise and maintain friendships, no children, no home of my own, no car, no assets, youth and fertility gone, loss of eduation and career, facing old age and poverty


    It's not "as bad as it looks" in that I have had very lucky (for this disease) times when I have been able to do a little more and I now have an incredible partner. However, I also have a family history of early cancers, severe osteoporosis that causes early disability and I simply do not know how much time I have left to enjoy life when there eventually is a cure.

    People with CFS and ME are dying as we speak, none of us are getting any younger. People from the Royal Free ME outbreak who have been ill since 1955 and they are living with the added burden of old age and then dying. They don't get their lives back.

    For some of us it will simply come too late.
  5. vdt33


    Parvo, thank you so much for a brilliant and wonderfully expressed post. IMO, those who can't see that all people with ME/CFS are in an urgent situation are in denial. If you have the ability to face the truth, then you know how urgent things are.

    I don't know how to remove someone's denial until they are ready to let it go. My approach with my son has been to keep giving him information without implying that it applies to him. Only he can decide what is true for him. One day, he said, Mom, I have CFS. I don't think he has a sense of urgency yet. No doubt, he will have periods of being in denial again. I myself have gone thru periods of denial.

    Wishing you continued inspiration.

  6. KnightofZERO


    I think one thing that would help would be a Common Activism Charter. Something simple, concise, and emotionally gripping. A lot easier said than done... but if we had a common "Activism Charter" which was usable regardless of where the patients lived I think that would be a good first step.

    As an example some broad issues a "Charter" might cover: Funding for Biomedical Research into the illness's pathogenesis with a view to developing curative therapies, Funding for Research into supportive treatments, the Name Change issue, Funding for Disability and Support Services, Health Consequences of M.E./CFS etc.
  7. alex3619

    alex3619 Senior Member

    Logan, Queensland, Australia

    I mostly agree with parvofighter on this. I have been sick 42 years, although I have only been seriously sick for 25 years. If ithe cause of ME or CFS induces ongoing pathology, then the longer one has been sick the worse they will be, if not in overt symptoms then in risk of death. It is up to those who are less sick to fight for everyone. This is not a case of people who are at risk fighting for their rights, this is about people who are often too sick to fight, or too sick to fight effectively. If someone is less sick, then they are the ones who should be fighting the hardest.

    I'll say it again, as I have on several threads - XMRV either is or isn't causal or co-causal. If it isn't we need to know now so we can divert research to more promising areas. If it is, and I am personally becoming more convinced over time, and I started thinking XMRV was a likely cause, then we need to get the research moving, validate it, and get governments active about treatment.

    You might like to send a request to your health minister (in whatever country you are in) to enquire about their emergency action plan if XMRV is infective and causal. They will probably ignore you (my two emails were ignored) but it is never too soon to raise awareness of this issue, and you can always say "hey, you were warned in 2010, why didn't you act? We demand action NOW!"


  8. Impish

    Impish Senior Member

    Victoria, BC
    Wow what a great thread. I think this thread could also perhaps repair some of the damage done by arguments in other discussions. I suspect that everyone on here could agree on key principles. We all want more money for CFS research for example. From that basis in agreements we could go forward.

    PR for CFS seems poor. Reporters want easy stories that can be tied up in a bow. We need to deliver it to them. For example disease suffered by x millions receives less funding than research into nose hair. Here is bob's story who has suffered from the disease for 20 years. It is partially the bad PR and not getting the story out there that allows people to still say things like "it is all in your head"

    It would also be helpful to have one or more clear "bad guys". Insurance companies that deny coverage, the CDC diverting funding, bad doctors (psychologists who prescribe exercise even though it has been shown to make CFS suffers sicker), etc.

    Once we have a clear story developed you go looking for a source. The news media is constantly looking for new stories...

    I think it would also be helpful to have clear actions for people to do who want to help (family, friends).
  9. Mark

    Mark Former CEO

    Sofa, UK
    Yes, another great parvothread!

    A few points I'd like to make...

    First, the comment was made somewhere along the lines that the sense of urgency and the losses may relate to severity. Maybe so, but as someone who classes my ME/CFS as currently mild and formerly moderate, I have to say that ukxmrv's description of losses matches mine perfectly. People with 'moderate' CFS would all experience the following I expect - I know I have:

    Everything except....I can drive (although it used to be torture a few years ago, and definitely wasn't safe, I had 4 crashes in one year, but I had no real option, I had to keep working) and I don't anticipate a menopause. :D Oh and thanks for pointing out what I have to look forward to in my 40s...I don't think I want to know the rest of the story just now thanks! :worried:

    Second point, there's only one thing I disagree with in your post parvofighter:
    "cataloguing this comment under "callous and unempathetic"
    I don't know about the rest of that message but the part you quote sounds like just a different way of looking at things. A retrovirus represents a probably incurable condition that will probably be inherited by one's descendants. As explanations go, it's not the most appealing. Of course it speaks volumes that despite this, we knowingly embrace that as a hopeful thing - it goes to show how desperate we are. And I've always assumed that my own condition is one of permanent genetic damage, so it's no great shock to me. But I really do think this person wasn't being callous or unempathetic by looking at things in a different way. Different people do look at the same experiences in very different ways. I don't think you need to assume any ill intent on the part of people who look at things differently or believe different things. I'm sure the member meant that even if XMRV didn't work out there would still be hope. People who test XMRV- and who have to wait for the other retrovirus(es) to be discovered will still need to find some hope to cling on to.

    Finally, one more thing that is crucial to campaigning. Perhaps the most powerful and simplest tool we have at our disposal. Patient testimonies.

    The life stories on here have moved me to tears more than once. Many times I've cried as I read something that resonated so strongly with my own experience, and yet was even more devastating. Cried for myself and my lost life, and for all of us. And felt good about doing so, because I sensed that sharing our pain was releasing something locked inside that I'd never been able to share.

    I think a web site - and even a book - full of patient testimonies, would be a really powerful thing. For so many purposes: the human interest story is what people and their media go for, and the surpiring similarities in our experiences is the most powerful part of the forum experience IMO. So whatever we do, we need to remember to focus on the human side, and to describe our realities and share our pain. That will probably get through to people far more powerfully than purely getting angry with them Ironically, one of the most valuable and powerful assertiveness techniques is to quietly and honestly, but repeatedly and firmly, repeat one's own story, one's own reality, describe how one feels. So I guess that truth will hold good for our own assertiveness as a community.
  10. ixchelkali

    ixchelkali Senior Member

    Long Beach, CA
    Great topic, Parvo.

    Marco pretty much covered my thoughts on this. My personal urgency is to get doctors educated. I can't tell you what co-infections or other conditions I may have, because I can't get tested. My health care insurance only does "evidence-based medicine" and the CDC says there's no evidence that tests for parvo, EBV, CMV, etc are warranted for CFS. There also supposedly isn't enough evidence of immune disfunction, so they won't check for it. Etc, etc.

    Somehow, I think that a sense of urgency is also connected to a sense of hope. If you perceive your situation as hopeless, you have no sense of urgency. I think increased hope leads to increased urgency. Maybe that's part of why it's hard to build a sense of urgency in this patient population. Maybe we've become somewhat jaded, somewhat afraid to let our hopes be raised again, lest they be dashed again.

    In terms of building a sense of urgency about this outside of the patient community, call me cynical, but I think the biggest motivator is money. Either that it's going to cost them money if they don't act, or that they can make money if they do act. Leonard Jason's 2008 study in the US concluded
    If we could convince the powers that be that they could save money by investing in research, maybe we could get somewhere. But I'm afraid that's long-term thinking in a short-term world.

    If only we were cute, like baby seals...
  11. CBS

    CBS Senior Member

    I just love the circularity of this approach. And if they don't test for it, I guarantee you that they'll never find it.
  12. Rrrr

    Rrrr Senior Member


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