Richvank re: Dr. de Meirleir & CFS Research

Discussion in 'Fibromyalgia Main Forum' started by Waynesrhythm, Aug 3, 2009.

  1. Waynesrhythm

    Waynesrhythm Member

    Hi All,

    Richvank posted this here on 8/2/09 on a thread that ended up getting deleted. I thought it had some remarkable insights so I decided to re-post it today. -- Rich is such a great guy. What an advocate and tireless worker he's been for us!

    Best, Wayne
    .................................................. .........

    By Rich Van Konynenburg on 8-2-09, on the ProHealth Board

    Hi, all.

    I just want to put in a good word for Dr. de Meirleir. I know him personally and have interacted with him for the past few years with respect to research and treatment of CFS. I believe that his motivations are honorable.

    It's true that he is affiliated with companies that sell products for testing and treating CFS. If someone wants to interpret that as meaning that he is only in it for the money, I think they are mistaken.

    Everyone involved in medical research and treatment has to have some source of income to pay their expenses, both personal and family expenses as well as the expenses of the work they are doing. Unless there is a source of funding, very little will be done in this field. Those who have followed the government meetings recently will know that the budget for the support of work on CFS has dropped significantly in the past few years. How do we expect researchers and clinicians to operate in this field without a source of funds? I can tell you that research is very expensive.

    Another point I would like to make is that occasionally the view is expressed on this board that if something really helpful for treating CFS were developed, it would immediately spread like wildfire. It would be in all the newspapers and the other common news media. Everyone would know about it and would be beating a path to the door of the developer of the "better mousetrap."

    Well, I'm here to tell you that that is just not how things happen in the world of research and development. I'm sorry, it would be very nice if that were true, but it just doesn't happen like that. I've worked in R & D for over 40 years, and I think I'm fairly familiar with this field from the inside. I've known some successful entrepeneurs, and I can tell you that they have had to work their behinds off to get their ideas launched.

    The truth is that someone can come up with a very helpful new treatment, and it is most likely that it will be rejected by those who could actually use it to great benefit. There are lots of reasons for this. Some have to do with intellectual inertia. Some have to do with entrenched economic interests. Some have to do with the cost of simply getting the word out. Some have to do with the risk of trying something that is not yet proven.

    In my experience, the people who are most motivated to find an effective treatment, and most willing to try something new, are those who actually have CFS. Of course, this can and has worked to their disadvantage sometimes, as people here know very well. And I can empathize with those who have spent so much of their limited resources on things that didn't really help them. I understand how bad experiences can lead to loss of hope and cynicism.

    But the fact remains that unless people are willing to keep their minds open to new possibilities, there is no real hope for a cure. Stomping everything new that comes along is a pretty good way to ensure that there will be little progress.

    Anyway, in my opinion, Dr. Kenny de Meirleir is a good guy, and the CFS community needs more people like him.

    Best regards,

  2. mbofov

    mbofov Active Member

    Wayne, thanks for posting this, and Rich, I'm glad to hear your support for Dr. de Meirleir, and glad to see your thoughtful post.

    Something to consider: it took something like ten years for the medical profession at large to accept that most stomach ulcers were caused by bacteria, even though the research was out there for all to see. There was great resistance to hand washing when it was first proposed a long time ago to help limit disease. So no, the medical community does not jump on new ideas even when backed by "traditional" research.

  3. frickly

    frickly New Member

    Once again, I totally agree that we must keep an open mind and be willing to listen and learn if we are going to find a cure for CFS. Thanks for all your very informative posts.

    Take care,
  4. desertlass

    desertlass New Member

    I would have missed it entirely, because I have not been here in quite a while. That was quite thoughtful of you to do that.

    My husband works for a tech R&D company and times have changed from where they were when he started twenty years ago. It appears that we are making so many leaps forward in the tech industry, yet at a very basic level things are not really changing other than what you see and how fast you see it.

    There is such a corporate mentality going on with every facet of life, now-- with researchers holding onto their findings for dear life, lest they be stolen away to another corporate lab. I really don't know how anything gets done.

    Yet, at the same time, there are times when a real breakthrough is made in these cut throat competitive worlds, and enough people come forward and are willing to risk their names and reputations, as well as their livelihoods.

    Even more astoundingly, enough people come forward, who are the intended users are willing to risk their money, projects, company, family well-being in order to just try it out.

    It took the Dyson vacuum guy twenty years to get his product to market. At every meeting there was someone who my husband calls "the donut-eaters"-- someone who only shows up in order to be at a meeting, eat donuts and pump up their own egos by saying, "that won't work because of xyz" without offering anything other than hearsay of a potential problem and not even the slightest desire for there to be a solution. They really want people to fail.

    And then the meeting shuts down and nothing is accomplished, except for more fear and more tight-fistedness with funding. The entreprenurial spirit is weakened. Dyson called these meetings "soul crushing".

    I can't even imagine how it must be in the medical field, because at least Mr. Dyson didn't have homeowners casting aspersions on his name the whole while, I assume.

    I have written to CFS researchers before to thank them personally for choosing to remain in the fray, because I can't imagine what possible reward they could glean from trying to profit off of our illness that could outweigh what they put up with. Do we actually think they are simply after the "secondary gain"?

  5. frickly

    frickly New Member

    Well said,
  6. consuegra

    consuegra New Member

    It is worth reminding people that dr. de meirleir recently went into the homes of 22 bedbound CFS/ME patients in Norway. (As of June, he had gotten eight of them out of bed.) At the conference in London in June, he showed a video of one of these extremely sick patients and had a sister of another sick patient speak during his presentation. If this is part of a racket, it is a very strange way to go about it. Very few CFS/ME doctors actually will go into the homes of the patients - at least in my experience. de Meirleir will go directly where the action is and he is a fantastic man for doing this. Anyone remotely connected to this disease can understand what this means and what a positive and noble action it is.

    [This Message was Edited on 08/04/2009]
  7. Waynesrhythm

    Waynesrhythm Member

    Hi Mary,

    Nice to see you here, thanks much for your comments. So appropriate to Rich's topic.

    Hi Lisette, what a great story; also very revealing. RE: "They really want people to fail."

    *** Isn't it amazing how some people just have such a destructive approach to life. I'll bet they blame others when things go wrong for them. :)

    RE: ""I can't imagine what possible reward they could glean from trying to profit off of our illness that could outweigh what they put up with.""

    *** I agree. Perhaps they've reached a point in life where they realize there are always going to be naysayers. Some of these naysayers seem to think anybody trying to help us out cannot possible be honest. And they then try to cast them as unscrupulous until they prove otherwise. Perhaps these researchers philosophically understand that it is part of the price they have to pay for contributing something to the human race.

    Hi Chris, thanks for your comments about Dr. de Meirleir. It feels very revealing, along with Rich's own personal experience of knowing him for several years.

    A final comment regarding Rich's post. He wrote at the end, "Stomping everything new that comes along is a pretty good way to ensure that there will be little progress."

    Rich is such a good writer and generally parses his words very carefully. To me, he also comes across as the consummate diplomat when others challenge some of his research work. So when he uses the word "stomping", that feels like some pretty strong language for him. It would seem that he has also noticed a self-defeating attitude/agenda from a small part of the ME-CFS community who can't seem to imagine that they're are really honorable people who are trying to help us.

    Thank you again Rich for all you do. And thank you to all the other researchers, doctors, supporters, etc. whom I will never even know. Some of what you've discovered is already helping many of us. I can only assume more breakthroughs will come. And many of us will benefit, even the naysayers.

    Best, Wayne[This Message was Edited on 08/05/2009]
  8. richvank

    richvank New Member

    Hi, Wayne and the group.

    Thank you for all the kind things you've written.

    Wayne, reading your most recent post reminded me of something the late Bernie Rimland said. Bernie was the founder of the Autism Research Institute and one of the cofounders of the DAN! project.

    Bernie (whose background was in psychology) said that we should all cultivate "narapoia."
    He defined "narapoia" as the belief that there's someone out there who is trying to HELP you!

    I really liked Bernie.

    Best regards,

  9. gapsych

    gapsych New Member

    Are people stomping on everything new or are they asking for people to think critically?

    It seems like it is okay to bash medical doctors, pharmaceutical companies, vaccines or treatments that have been shown to work by the standards of the medical community.

    But when some of us ask that people look at things from all angles, use the scientific method and logical reasoning, we are stomped on.

    I am not saying the conventional medical community is perfect or can cure everything.

    People use anecdotal experiences, think correlation is the same as causation or promote something that is contrary to what we know about the body. Maybe people need to be upfront and simply say, I know this has not been proven but I believe......

    Quite a few of us have looked into alternative therapies, done a lot of research, know about the scientific method whose premise is not that difficult to understand if you take the time to look at it. The premise, not all the statistics, etc., LOL!!

    It's too bad, but I think with what has happened the last several weeks shows we need an alternative board. Alternative approaches are not medicine. If they prove to work, they become conventional medicine.

    Both sides, if that is what you want to call it, have people who may be wording things inappropriatly.

    I think it is unabashedly inexcusable to simplify any critical thinking as meaning people want others to stay sick. No one deserves to be labeled like that.

    It is simply rude and inappropriate.

    [This Message was Edited on 08/05/2009]
    [This Message was Edited on 08/06/2009]
  10. elliespad

    elliespad Member

    Just want to say, may God richly bless you, and all those, unknown others, trying to help us. A heartfelt thank you.

  11. Diva55

    Diva55 New Member

    Surely you have got that the wrong way round.

    We don't need an "Alternative Board". This board is sponsered by Prohealth which is a SUPPLEMENT company so I would expect alternative therapies & supplements to be discussed on this board. That's the reason I signed up to this board.

    Therefore a Medical board would be the suggested alternative to discuss drugs & so called proven methods.

    I worked for a large drug company some years back & know how they "prove" that a drug works which is why I avoid drugs whenever I can.

    Rich: Thank you for all your hard work & compassionate approach.

  12. gapsych

    gapsych New Member

    LOL!! Welcome to the board.

  13. gapsych

    gapsych New Member

    In my post I am responding to Rich's last sentence, not Rich personally. I can see where this might be be confusing. :D

    [This Message was Edited on 08/06/2009]
  14. richvank

    richvank New Member

    Hi, gapsych.

    No problem.

    I really wasn't intending to impugn anyone's motives. I just meant that the result of expressing immediate criticism and cynicism about new treatments or reports of treatments that have successfully helped someone is that people aren't encouraged to bring up these things here. Whether or not that is the intention, it is the result. People tend to discuss new things or positive things where there is a receptive audience. I think that's just human nature. I often receive positive reports from people off-line, because they don't want to post them here and have to "run the gauntlet." I might also mention that there are over 900 people in the cfs_yasko group now, where the group is receptive of new information. There are also many people going to Cort Johnson's forum, again a very positive place to bring up new and successful things. What I'm trying to say is that it is possible to be one's own worst enemy by constantly being critical or cynical. Such a person might end up being the very last to hear something that could really help them, because they keep "killing the messengers."

  15. gapsych

    gapsych New Member

    I hear where you are coming from and agree with a lot of what you are saying.

    However I think the opposite phenomenon can occur. Someone, usually out of the blue, posts about a cure, without going into a lot of detail and people rush to deify this person before stopping to think, question and analyze what the person is saying.

    This is very, very, understandable. We all want relief, myself included.

    But it is also important to realize that this can be just as polarizing as someone coming on the board and immediately picking a person apart.

    I am just explaining a dynamic I see on the board which may be helpful to keep in mind when responding.

    To question, to think, to analyze, may not be negative but simply someone making another point.

    I think we really need to do some self analyzing as to whether we are perceiving anyone who disagrees with us as negative regardless of the wording.

    Just because someone disagrees with us is not necessarily negative. A lot can be learned with dialogue explaining different viewpoints.

    I do not think there are many people who hesitate to post here, but that is my personal opinion. I believe that the argument could be used to get people to not disagree as a lot of people have been saying this will hsppen. But we might have to agree to disagree on that one. :D

    I do not want to go to the other boards mentioned as they are too alternative, though that would not keep me from posting, LOL!!

    This is a wonderful board and certainly not as negative as others I have seen.

    Take care.

    "What I'm trying to say is that it is possible to be one's own worst enemy by constantly being critical or cynical."

    I agree with this but guess I am saying that the opposite could be viewed the same way. Isn't that interesting?

    ETA "

    [This Message was Edited on 08/08/2009]
  16. richvank

    richvank New Member

    Hi, gapsych.

    Your points are well taken as far as I'm concerned. We do need to look into things carefully to find out what's actually true. Nobody wants to be misled into doing something that would be worthless or even harmful. I understand that.

    I think what's needed is some balance and some patience. It's one thing to present with a positive attitude and a request for more information, giving a poster the benefit of the doubt unless and until facts indicate otherwise. It's another thing to come on from the outset with an approach that suggests that the person posting is dishonest or wrong or motivated for their own gain, before enough information has been presented to make a reasonable decision about those things. I know that you have a background in psychology, and I think you understand what I'm saying.

    Best regards,