Friday, 7 October 2011

From Here ... To Where?


I write this with a growing sense of dejection, with a vastly reduced sense of hope and with an anger I cannot deny.

Those are all my personal feelings and I take complete ownership of them. They are not positive or healthy but they exist.

However, I write this entry on behalf of others rather than myself.

The Whittemore Peterson Institute existed as a beacon of hope for those with an illness where hope and progress had been in short supply. Whether it was foolish to invest such hope in an institution is an argument for another time perhaps. The point is, the WPI represented something tantalisingly appealing for those of us who felt we were not being taken seriously by the medical community.

The events of the past week or so have been extensively documented elsewhere so I will not cover that ground again in this post. What I will say is that I have observed a complete lack of compassion or engagement from the WPI towards a patient community who are desperately sick and who have probably sacrificed much in terms of personal donations and the work required to advocate on the WPI's behalf.

As the week unfolded, I tried to centre myself and put the emotion to one side. This was not easy but I managed to keep quiet about what I was observing.

Other than the sense that the WPI did not value its supporters, I was struck by the reality that they were abysmally lacking in any sort of public relations or customer service expertise. The communications coming from them were either sporadic, irrelevant or downright unprofessional.

Today, Annette Whittemore was supposedly holding a Question & Answer session via Facebook that would also address the questions/concerns that had been emailed to them (I had emailed questions in advance of this Q & A session being announced). What followed was something I can only class as a debacle from start to finish.

Pertinent questions from people who were making their health worse by taking the time and effort to be on Facebook and type out their concerns were ignored. No planning had taken place on how to structure answers or group questions into categories. In fact, it was a poorly thought out exercise that only served to make the Institute look even more inept and insular.

Instead of questions being answered, we were continually threatened with posts being removed if they contravened the Institute's 'social media policy' (whatever that might be) and were treated to the WPI's office manager telling us they were hurt by some of the comments. Forgive my lack of a bleeding heart for your hurt feelings Kellen - I place much more importance on the feelings, and poor health, of those who are now left with unanswered questions and a lack of hope for the future.

The upshot seems to be that the Vivint funds and personal donations were made to the WPI and will remain with the WPI. I am no lawyer so I cannot comment on how that stands up legally.

What seems an altogether different prospect for potential legal action is the VipDx testing that many patients paid a considerable sum of money to have. Annette Whittemore stated more than once that the results of the test had been 'clinically validated'. In light of recent events, I feel quite sure a lawyer could have a field day with this.

In the interests of full disclosure, I am a patient who has donated sums of money to the WPI and I have also invested significant amounts of my rather limited energy to support them via advocacy and voting contests. I am therefore feeling some personal antagonism in relation to this whole mess.

However, my anger is mainly on behalf of those who are much more sick than I am. Those who do not have any quality of life. Those who are too sick to talk or sit up in bed. I suspect a large proportion of those who paid for tests fall into that category as such patients will want to grasp any glimmer of hope for improved health.

A divorce is usually messy and we are often forced to take sides. I am not in possession of all the facts and cannot really comment on who is to blame for us being where we are now. What I can comment on though is how I feel in my gut.

My gut tells me that Dr Mikovits has a passionate concern for the future of ALL patients with M.E. - my gut tells me the WPI do not hold the same passion or ethos. I am deliberately putting the emphasis on ALL - I am sure I do not need to spell that out further. I do not feel valued, respected or important to the organisation I donated towards and advocated for. I therefore cannot justify supporting them in the future, regardless of any promises they make about treatment options.

None of which brings me any further forward in answering the question posed in the title of this entry - From Here ... To Where?

18 comments:

  1. Well said Barry. What an unfortunate mess.

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  2. Great recap, Barry, and a great capture of the sentiment as well. Thank you!

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  3. All: bit more info on the questions posed and answers given over at Khaly's blog: http://cfsuntied.com/blog2/2011/10/07/epic-fail/

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  4. Thank you Barry,
    you summed up my feelings exactly. I to think Dr.Mikovits has a passionate concern for all patients, which is something the WPI have been shown to lack in the light of the past week.

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  5. Thank you, Barry. I can see that I am not the only one.... you definitely expressed what I have been feeling!

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  6. why does anybody think either the wpi or mikovits come out of this well. mikovits seems to care but why should i believe that means anything? she has some pretty serious questions to answer before she can move on and after that if she gets headhunted or papers published i'll change my opinion. if she gets direct funding to carry on work from pwme i'll feel like we're being exploited. just as exploited as we were when being sold tests by the wpi that were worthless. whose bright idea was that? sell test for something only they could detect. what a shower of b*****d's. we've been used!

    mikovits didn't do anything for us out of the goodness of her heart, she was well compensated. the wpi wasn't exactly set up for altruistic reasons either, their daughter was sick and thay wanted a treatment for her, but at least they fronted some cash to kick start some research. although i don't understand why the money had to go to a new organisation instead of selectively funding top scientists on specific studies.

    dare we even consider the worst case scenario, i think you all know what i mean, can you imagine how many of us will feel then. after all the s**t we've had to deal with over the years. having the cause of ME and treatment for it (and validity!) cruelly dangled in front of us (they weren't exactly do cautious with their words or claims). some of us have incorporated xmrv into our identity to the extent that they'll believe in it now no matter what.

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  7. I think at this point WPI is irrelevant. If a researcher at WPI announces a scientific finding which journals would publish it? Which researchers would devote precious time and resources attempting to replicate it? The same questions apply to Judy Mikovits.

    While the opinions of the ME/CFS community might matter in terms of future fundraising for WPI, the opinions of the scientific community matter more in terms of the potential for producing quality research that can be replicated and validated. On this score I think WPI and Dr Mikovits are done.

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  8. Really great piece of writing and well done for making it so coherent when feelings are running so high

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  9. I second Cusp. Well said Barry.

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  10. Thanks Barry for putting into words what I feel.

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  11. Anonymous,
    in what terms did you mean Mikovits was well compensated please?
    That has never bee my understanding, that's why I ask.

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  12. I attended the IACFS/ME conference in Ottawa the end of Sept. where Annette presented the reason she built the WPI which was to find the cause of of ME/CFS which caused her daughter to be bed ridden. She had made great improvements to the point of volunteering. A member of the audience asked how her daughter is now, & she responded that there has been a complete relapse. Annette looked very tired, & strained. I assumed her daughter had been taking anti virals.
    Judy did a presentation for HGRV, & John Coffin presented against HGRV in ME/CFS. He kept asking her to 'bring on' her proof. It was a very uncomfortable moment. I hope this helps in what I observed of what was going on previous to the firing event. I had a bad relapse & couldn't continue with the conference.
    Joan

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  13. Thank you for your honesty in presenting this summary, Barry. I have to admit that I vacillate between optimism because I think Dr. Mikovits is standing in the doorway of solving this illness, and desolation thinking that hope no longer exists. I really hope Dr. Mikovits continuees her research.

    Dr. Mikovits asked me to post this message for her:

    Dr. Judy Mikovits thanks patients and friends for their support. She intends to continue her research and she will not give up. She will never participate in perpetrating fraud on patients or funding organizations.

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  14. Me, Myself and ME

    All i meant was she received a salary for her job at the WPI. (i'm not privy to her salary and maybe she wasn't well enough compensated. sorry the brain fog often causes poorly communicated thoughts) All i expected from her was normal standards of professionalism not for her to become an advocate for us as sometimes having emotional distance from the issue can result in clearer thinking.

    I apologise if my words are rubbing salt in the wounds after this trauma but i'm really angry and i don't know who to trust or believe. I really hope when the dust settles things don't seem as bad or at least there is something positive to take from this.

    At the moment i can't beleive this will work out in a way i like.

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  15. anon &
    me, myself and I:

    WPI's 990 form listed something like $156K i think for a salary. That is certainly not out of line imo esp considering these contracts are almost always structured so that the employer keeps all intellectual property. Any scientist associating themselves with ME, esp if they are outspoken for patients and valid science, are going to get their careers trashed, so the salary certainly isn't adequate compensation in that light.

    Annette's salary is $0 and she and her husband put in millions, so it is really too bad if, in fact, she was an inefficient manager (i don't know enough personally to conclude either way, but am leaning towards yes, she was), but you certainly can't say she was out for money or that it was not altruistic. At least she does something for her daughter and other pwME. Most parents just make the situation worse for their children by not believing them, etc.

    The blood test stuff does seem sketchy though and I certainly see why people who shelled out their last dollar for it are angry.

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  16. Anon and Justin,
    thank you both for your replies.I asked the question because
    I did hear from a reliable source that at one point the WPI was so short of cash that a number of employees did not pick up their paychecks for some time.
    I have since heard but don't know if it is true that Judy handed her patent rights over to the WPI.
    For her sake I hope this is not the case
    I have never thought the Whittemores were in it for the money, but I do agree Annette was probably not the best person to manage the Institute.
    Regarding the blood tests which they sold, that matter needs clarification for those who shelled out a lot of money some could ill afford.
    Anon I did not think you were rubbing salt into our wounds, I only wondered if you had information which we were not privvy to. I was not intending to start trouble here when I feel the ME community should be trying to hold itself together rather than fragment.So please don't get me wrong.

    One of their big mistakes from the WPI point of view was that of sending Judy round the world advocating and speaking to patient groups. You see the patients saw her not only as a scientist giving them hope of a cure, but they also saw a warm compassionate woman who cared about the patients which is something very rare in a research scientist.
    A lot of these patients themselves advocated for the WPI because of Judy.
    They donated money and spent a lot of time and energy they could ill afford on voting for further funds because they believed Judy was heading the research. So I suppose it is only natural now that we have a whole community of very upset, angry and confused patients.
    We can only look to the future and hope someone will help our cause.

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  17. @Justin
    Correction: Annette pays herself plenty!
    @Barry
    Fantastic, I couldn't have said it better!!!

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  18. Hey, Barry - I just (finally) read your story at Becoming Visible 4ME (yeah, only about 6 weeks late!) I wasn't sure if you were still reading comments over there, so I'll reprint my comment here:

    Hi, Barry -

    I am, as usual, way behind and just now read your story here (it's been sitting in an open window on my browser all this time!)

    I am stunned to find out you've only been sick for 15 months. Your level of emotional adjustment and acceptance are pretty amazing for such a short time being ill. I'm even more impressed with you than I was before! :)

    I share a lot of your characteristics and did the same as you, once I was finally diagnosed - researched online like crazy and read everything I could to try to understand this illness. I did find quite a few medications that have helped me - they are what keeps me going these days, and I am grateful for the improvement even though, like you, I am still very limited compared to my old life.

    Thanks for sharing your story here, Barry, but also for your determination to help others - your blog and FB group have both helped a LOT of people, and you should feel good about those accomplishments!

    Sue

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