Another WPI?

Discussion in 'Fibromyalgia Main Forum' started by gapsych, Mar 23, 2010.

  1. gapsych

    gapsych New Member!

    I just read several articles about plans for a NeuroendocrinImmune Center to be built in New Jersey.

    Sounds good on the surface however, there seem to be two controversies that people are concerned about. I am interested what people think about this?

    1.Lyme is going to be included as a Neuroendocrinimmune disease and will go by the IDSA recommendation.

    2.One person on the board of directors and as a representative of the CFS/ME community, is getting Neural Therapy treatment with homeopathy and EFT. He will be sitting beside members of the scientific community who do not believe in homeopathy nor neural therapy. Will they take him and by association CFS/ME seriously? Will other medical conditions take priority because of this.

    Are the Senators who are now looking into the clinic bill, aware of these issues?

    If you want to support this project, funded by tax dollars(??) go to the above site and you can find where to sign a petition to support the above bill.

    If you don't support this, write the New Jersey Senate, as the bill has already passed the house. Let them know if you have any concerns whether they are the above or others.

    Please do not think I am trying to start a controversy over this. But this affects so many of us here as we are the community of people with CFIDS/ME.

    If you post, please be respectful and debate the facts.

    Does this clinic appear to be supportive of the CFIDS community?


    [This Message was Edited on 03/23/2010]
  2. TigerLilea

    TigerLilea Active Member

    We need more centres such as these that will take a serious look at illnesses such as CFS and Lyme disease, and hopefully, one day they will find the causes, and if we are really lucky, they will find the cures.

    What good comes out of trying to get funding stopped because a few people happen to distrust Mike Dessin? If you look at the list of doctors/researchers that are involved with this project, I think that we will be very well represented and that they aren't going to waste money researching Gupta or neural therapy.

    We complain loud enough that enough isn't being done; we will look like fools if we oppose this.

  3. gapsych

    gapsych New Member

    We absolutely need more centers. But will this one have the credibility of WPI?

    You make a good point that the doctors/researchers not wasting money on Gupta or neural therapy.

    But will they do the same for CFS/ME?

    I think we will look like fools if we have people who do not really represent the CFS/ME community on the board. It sends a message that is not congruent with most CFS/ME groups.

  4. AuntTammie

    AuntTammie New Member

    pandora is the one that started this idea and they do have a lot of credibility.....the whole idea behind this is to get people to stop fighting over their differences (whether those are between the various NEID illnesses or within the grps themselves)

    there are enough similarities among the illnesses & the idea is that collaborating on research that takes place in any of the grps could prove very beneficial to all.....they are trying to be open to a lot of different approaches and to work together

    personally I think it's a great idea.....I am so tired of all the bickering - disagreeing is fine when it's constructive and when it leads somewhere, but the automatic discounting of one theory or another bc people are so black and white in their thinking (not referring to anyone in particular here), the fighting among patient grps and all that, is counterproductive and a waste of time and money - this could be a really good thing
  5. HeavenlyRN

    HeavenlyRN New Member

    ....I'm still learning here. What does WPI stand for?
  6. TigerLilea

    TigerLilea Active Member

    WPI is the Whittemore Peterson Institute in Nevada. They are the researchers that are trying to connect XMRV to CFS.
  7. gapsych

    gapsych New Member

    I know the politics get old but the reality is that it has played a part of CFS for decades. I am not saying we don't need a clinic like this but I am absolutely appalled that Mike Dessin representing us, is troublesome.

    There was a page on the WPI about the credibility of PANDORA losing ground and going towards a lot of the mind/body only therapies. Unfortunately the thread was deleted but there was some other information I want to look up.

    Lyme as far as I know and maybe someone can clue me in here as I am still looking for information about this issue, is not a neuroimmune disease and there has been a big brouhaha within the New Jersey Lyme Association not wanting to be associated with the clinic.

    This is not a knee jerk reaction by myself nor a lot of other people. However, it does go back to when Dessin testifying and people up in arms about him being our spokesperson. Actually, as I said above long before that with Tahoe Village.

    If anyone else can cite some sources, it would be appreciated.

    There is a lot of information on Phoenix Rising, however, I think some of that has been taken down. Cort has a blog on this but does not mention Dessin.

    ETA I have a lot of respect for WPI.

    ETA There have been some criticisms of the CAA. If someone wants to chime in on that.[This Message was Edited on 03/23/2010]
  8. ulala

    ulala New Member

    "One person on the board of directors and as a representative of the CFS/ME community, is getting Neural Therapy treatment with homeopathy and EFT. He will be sitting beside members of the scientific community who do not believe in homeopathy nor neural therapy".

    Do we know who this person is? Could it be Mike Dessin/m0jpey??????
  9. gapsych

    gapsych New Member

    It's Michael Dessin.

    [This Message was Edited on 03/23/2010]
  10. ulala

    ulala New Member

    He's a glutton for punsihment. Who's running the show over there?
  11. gapsych

    gapsych New Member

    I know. I absolutely could not believe it!!

    I did not like Dessin representing us in Washington and I don't like the thought of him representing us in the new clinic, sends shivers up my sping. But that is my opinion and I am not saying that he did not have a right to speak. Thank god, he did not go into details about his miracle recovery or treatment.

    However, I wonder when this happened and if the senators know about him. Doesn't add prestige to a clinic that could be prestigious.

    I would be interested in hearing from people with Lyme as the NJ Lyme association is up in arms.


    ETA It also sends shivers up my spine, LOL!! I must have Spring on my mind!![This Message was Edited on 03/23/2010]
  12. ulala

    ulala New Member

    it's preposterous.

    You said "the NJ Lyme association is up in arms." Is that because of Dessin? I wonder who "offered" Dessin up? I don't think it'll happen. There's too much info out there about him and too many people would be outraged. He'll just cause stress to so many people and I know that Cort wouldn't want that. Stress is not good for people with CFS and I would assume that it would also be stressful for Dessin because his credibility will be brutally attacked
  13. bakeman

    bakeman New Member

    are you positive?
  14. ulala

    ulala New Member

    to WPI? They have the facilities, the credibility and the researchers.
  15. gapsych

    gapsych New Member

    Yes this is on Cort's site from Michael's mouth to God's ears.

    Ulala, that is what I would to. Just give the money to WPI.


    ETA The Lyme community in NJ is up in arms because the clinic will not be going by the ILADS guidelines but by the IDSA guidelines.

    Most of the medical community goes with the latter but it is a hotly debated topic.[This Message was Edited on 03/23/2010]
  16. victoria

    victoria New Member

    The problem with Lyme being included is because of the continuing controversy over WHAT 'Chronic Lyme' is.

    IDSA (Infectious Disease Society of America) maintains it mysteriously becomes an autoimmune condition if symptoms do not disappear after what they consider "appropriate treatment", abx at minimyum dosage for 2-6 weeks, rarely longer.

    ILADS (International Lyme And Associated Diseases Society) maintains that continuation of symptoms means that it is a continuation of Lyme Bb residing in the body, as it is well known that it can hide within any cells it wants and remain dormant or proliferate at will. Bb have been found in spinal fluids, etc. and there is a lot of research to back up ILADS.

    On a personal basis, my son was positive to the extent of showing all 5 bands for tracking purposes by the CDC not only before beginning treatment, but also after 6 months of abx. My guess is that if someone were to pay for more testing, they'd still find it in him.

    I have also read many other similar stories. Hence my support of ILADS' position, and do not think it should be included.

    That said, it IS possible that something like XMRV could be helping the Bb and other stealth pathogens maintain their hold... but it is also possible that CF/FM/ME is being caused by a variety of stealth pathogens that work similarly to Lyme, and the XMRV is helping these pathogens as well.

  17. gapsych

    gapsych New Member

    This is the future clinic's web site. Keep scrolling and you will find Michael's name.

    Pandora is involved in this clinic.


    ETA There have been so many deletes and editing on PR it is hard telling if the original posting is still there but I will look.!

    [This Message was Edited on 03/23/2010]
  18. cfs since 1998

    cfs since 1998 New Member

    He is not on the board of directors. His name is listed as being *eligible* for a position on the board at large, not the regular board. You really need to learn to read.
  19. gapsych

    gapsych New Member

    You are correct but it is still too close for me. I am sure a lot of other people would agree.

    These "seats" are usually bought.

    New Jersey has almost as much corruption as Illinois, where I live.

    I've been meaning to get around to learning to read but gosh darn it, I just keep putting it off. Too busy with other things.

  20. quanked

    quanked Member

    why do people object to him? Did someone say he has been "cured"? If he has a cure then has his cure been studied and clinically tested?

    And the objection to New Jersey is about what? When I think of New Jersey (and I know only what I have heard) I think of chemicals and mutations and organized crime. Kind of like people I have known from the east coast who thought Oregon was the wild, wild west based on what they have heard.

    Is funneling funds to the WPI a real possibility?

    Is creating another center just diluting the research process by reducing the funds available to WPI or is it increasing more opportunities for further quality research?

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