1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
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Lessons from ME/CFS: Finding Meaning in the Suffering
If you're aware of my previous articles here at Phoenix Rising then it's pretty clear that I don't generally spend my time musing upon the philosophy of the disease. I find it better to spend my time reading research and trying my best to break it down to its core elements and write...
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Must see!!! Www.cdcchatter.net - pandora's box is open!!!

Discussion in 'General ME/CFS News' started by muffin, Jan 8, 2010.

  1. muffin

    muffin Senior Member

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    The CDC (not official CDC site, meant for employees/public to wail about the CDC and boy they do!) http://www.cdcchatter.net has allowed the following two comments on the site regarding the possible (probable) cover-up of CFIDS Retrovirus out into the public. HAVE A LOOK and make a comment. DO NOT take personal shots at Reeves or Wessely. Comment ONLY on real, factual data, findings, etc. This is a HUGE BOMB that dropped. I am stunned that the webmaster allowed it out there. So, respond with real, accurate data and no personal attacks or hysteria. This might get picked up in the media or read by those that actually can and will do something for CFIDS/ME. I am shocked. But with the Cleveland Clinic and the National institute of Cancer cited, there is more validity than if some puke off the street were to post their own assessment. Look under the heading: Has the CDC lost its Credibility with the American public?


    http://www.cdcchatter.net
    Re: Has the CDC lost its Credibility with the American public?
    (Score: 1, Interesting)
    by Anonymous on Jan 05, 2010 - 08:51 PM The CDC & Other Federal Orgs MASSIVE Cover-Up of Cancer Causing Virus
    Many Chronic Fatigue/Immune Dysfunction sick believe that the Centers for Disease Control (CDC) and possibly other Federal organizations have covered up at least one if not more deadly Retroviruses that are known to cause cancers - and now the connection to CFIDS with the XMRV Virus is coming out with hard proof and research.

    Has the CDC and other Federal organizations engineered and either deliberately or accidently allowed one or more deadly Retroviruses into the population? Is transmission only via the nation's blood supply - which is bad enough? OR, is transmission via airborne which means that everyone, everywhere is a target for these deadly Retroviruses? Many do believe that CFIDS and the Retroviruses are highly contagious. The good part of that is that CFIDS sick are far too sick to leave their beds and homes and venture out into public and spread their disease. But what about the blood supply? What about those that have the XMRV in their blood but are asymptomatic?

    Congress MUST investigate the CDC, CDC/CFS (William Reeves) and find out if our government has indeed created and allowed deadly viruses out into the population - and allowed this situation to continue for more than 30 years. Why else would the CDC do everything in its power to downplay CFIDS, kill off research from government labs, and label CFIDS sick as mental cases when over 6,000 well researched documents and studies show clearly that CFIDS is real, disabling, and affects all of the body's systems including the brain (CFIDS dementia is real and some are in nursing homes because of this).

    So again, IS the CDC with assistance by other Federal organizations covering up serious viruses from the public? We need ONE insider at the CDC or other Federal organization that will spill the truth and help get the millions of terribly sick and dying the help that they should have had three decades ago.

    Recognize that YOU and your family are at risk. For more information on the XMRV Retrovirus see www.www.wpinstitute.org - The Whittemore-Peterson Institute (the small, private research lab that discovered this retrovirus with the Cleveland Clinic and the National Cancer Institute - highly credible sources). Also Google XMRV and see the research being done in Mach speed now that it is known that XMRV does cause cancer(s) and is most likely in the nation's blood supply and possibly airborne.

    -----------------------------------------------------------------------------------------------
    Score: 1, Interesting)
    by Anonymous on Jan 06, 2010 - 05:28 AM
    The cancer rates, esp. Leukemia and Lymphomas are about 50 times higher in the Chronic Fatigue/Immune Dysfunction group (NOT using Reeve's definition of CFS, but real CFIDS sick). This data alone should have caused the CDC to move it out back in the 1980's when they too saw these cancer rates but chose - for whatever reasons - to ignore and continue on a path of demean and destroy the patients.
    The CDC has no credibility with the CFIDS community. And as news of the retrovirus that causes cancer hits the public, the public will lose whatever trust and respect they had for the CDC.

    So many faked epidemics like Swine Flu, bird flus, SAARS, and yet the one real dangerous and deadly epidemic is CFIDS and that is the ONE real epidemic that the CDC has refused to deal with in any fruitful way. The CDC/CFS people are happy to play psychobabble games and take the funding and waste it - and so here we all are, 30 years later with no movement of any sort from the CDC on CFIDS.

    No wonder the public has lost all faith and trust in the CDC. If information comes out of the CDC, it is not to be believed - right off the bat.
  2. _Kim_

    _Kim_ Guest

    Anyone can post on the CDC Chatter site.

    These 2 posts that are referenced talk about the CDC from a patient perspective. These are not likely to be comments made by CDC employees, IMO.
  3. Koan

    Koan Be the change.

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    I agree with Kim's appraisal of this: it's a patient. I always hope that posts such as this don't generate push back. There's no science in that post and there are a lot of statements which can be easily refuted.
  4. muffin

    muffin Senior Member

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    They are no doubt patient comments. But that doesn't dampen the effect of what WILL start coming out soon. The CDC people will scream and yell, and I do expect this to get picked up and spread.
    Remember, there are sympathetic and knowledable people at the CDC who do know that CFIDS/ME exists but they keep their mouths shut for very obvious reasons. Want to keep your job? Then keep your mouth shut. But now with the cat out of the bag I do think that a couple of CDC people may speak up. And if they don't, well, it is still out there for others to read and think about.
    So the point was NOT that this is from a CDC person, it isn't, obviously it is from a sick person who is mad and fed up. The point is that it is now out there in the light of day for all to see and comment on. Take your shot- make your comment - esp. you Kim, you have great brains. I gather stuff up and send it to the head of the CDC every now and again just in case he might see what the heck is going on at his agency. Never know. Spread that net far and wide.
  5. muffin

    muffin Senior Member

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    Koan: Then put out hard core data that can not be refuted. There are some super bright people here that have more knowledge and understanding of the whole CFIDS medical background than most doctors do. I have read some astonishing things come out of CFIDS people who have spent what energy they have on getting smart on viruses, treatments, damage to the whole body/brain, etc. Let the smart ones who have the real knowledge go and speak. Why would this cause damage? Anyone with a brain can go and look at thousands of medical documents from heavy hitters and READ the data, etc.

    Being nice and complacent doesn't work. It hasn't worked for 30 years. It isn't going to work when you are dealing with very unethical people who twist data and use it to their own advantage. Time to fight fire with fire, but in the CFIDS sick case, we are telling the truth while the CDC and Wessely and company are the liars. Bold faced liars that get away with it.
  6. Koan

    Koan Be the change.

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    Hi Muffin,

    I agree with you totally about complacency. I'm an old school activist and have been for 40 years. Even my Buddhist activities contain a huge amount of activism with SFT (Students For a Free Tibet).

    I also agree with you that we have some excellent scientific minds and also some excellent scientists in our ranks. Not me, I hasten to add, even though none would mistake me for one.

    I just don't think this post is going to have any effect at all except, maybe, to cause someone who takes exception to comments like SAARs being a "faked epidemic" while CFIDS is "the ONE real epidemic", or there being "about 50 times" more cancer in PWC... to correct the poster. Scientists, should any pay any attention to this, love an easy target and this post is an easy target, IMO.

    I think it would be a good and interesting post here but I don't think it's particularly helpful there. I think we should follow the rules you set out in your opening for this thread and post as you suggest - carefully.
  7. muffin

    muffin Senior Member

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    Koan: POST VERY CAREFULLY! We now must use real, hard core data from established and highly credible sources. This was just a first volley, the next comments MUST have solid data with reputable sources that are cited in the comment.
    I find it unbelievable that Reeves and Wessely can make outrageious statements about us and despite all the thousands of studies out there - and they get away with it each and every time. That must stop. Again, as a one time defense analyst - we must counter-attack and hit hard with real data and very valid, almost irrifutable sources.

    I'm sorry. I know that there will be many people out there that think I am too angry and that will hurt "the cause". I have had that comment hurled at me before but I see nothing has changed since I got terribly sick 15 years ago. NOTHING. And now I am facing down cancers and I am MAD. And as I have said elsewhere time and again, I can not stand to watch as my own flesh and blood (nephew and niece) come down with what I have and have to live their potentially wonderful lives sick and in bed as I have. I am now 49 years old and got sick after a virus at age 33 at one of my happiest and most fulfilled points in life. I have spent 15 years being trashed by people who could not stand in my shadow, because they COULD attack me given what the CDC and other idiots put out into the public domain. And then, as noted, WHAT ABOUT the poor children and young people who get this and no one believes them? Is that fair? Basically, the game is over for me. I don't expect to live all that much longer as I have too many issues going on and no immune system now - it was burned out and I get every odd thing out there including wild infections that my body should have knocked out without any real effort - but didn't. So, will I make it through cancer with NO immune system?

    I do think we spend too much time complaining to eachother and spending time and energy on some very smart and valid comments that should be out in the public domain and not here on a patient site. So, please - take shots at me, fine. BUT, use your brains and kick your comments OUT into the public for others to read. Counter the garbage that Reeves, Wessely and the other haters use against us. They lie - we and our front line doctors and researchers (Wonderful Peterson, Cheney, Klimas, Bell, Buchwald, and other drs/researchers who see and deal with us) are telling the truth.
  8. Koan

    Koan Be the change.

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    OH Muffin!

    It was never my intention to take shots at you! You and I are definitely on the same side, feel the same emotions, are the same kind of totally fed up and share the same anger. Sistah!

    We only disagree on the effects of the CDC post and poster. I don't think this is a big deal. The commitment we share is so much more important than our diverging opinion on the potential effects of one anonymous post and poster.

    We fight on together!
  9. dipic

    dipic Senior Member

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    I have to agree with Koan - with all due respect, I don't see what the big deal is here. The post (likely made by a CFS patient) is conspiritorial at best and doesn't do a whole lot to provide facts supporting their claims. I suppose that is what you are in fact asking for but I am not sure that it will have the impact you also seem to be hoping for.

    In any case, I personally do not feel I could help. I do not, unfortunately, have the cognition or adequate knowledge to do what you're asking. Perhaps someone else is more willing and able, but again, I question it's significance.
  10. JustJack

    JustJack put on yer dancin' shoes

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    With you both

    Hi to you two,

    Can I insert my support for what you are both saying. I spent over an hour yesterday reading the thread about Wessley and the report from UK. Everyone is so divided and there is sometimes too much vitriol between folks. It made me anxious just reading, let alone trying to perhaps add to the conversation. This is one thing I have found on the forums over time and there is so much anger, rightly so.

    But, and this is a big but, those who have been sick for a long, long time and have been abused by the system and shunned, ridiculed and sometimes practically laughed out of an office, they are dismissed so fast, should not be ridiculed here, on this forum. I know there are all kinds here, lurkers, etc., but what has happened to us in the last 25 years just cannot be silenced now. This forum becomes one of the only lifelines we can hold on to since we do not get support in our daily lives.

    I have a really hard time when anyone supports a psycological basis and it brings on real pain and anxiety to read it here.
    I keep trying to stay clear on what is right and hold onto as much patience as I can. This is very, very hard.

    Thanks for letting me butt in,
    JJ in Sacramento:cool:
  11. Koan

    Koan Be the change.

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    Hey JJ,

    I'm kinda confused, which is pretty much my steady state, I must admit, but I don't think anyone in this thread is supporting a Psychological basis at all! At all!

    This thread was simply about the efficacy of a third party (not a member here that we know) post on a CDC site, nothing more.

    If I've got hold of the wrong end of the stick - and it wouldn't be the first time by a long shot - oops, sorry!
  12. fresh_eyes

    fresh_eyes happy to be here

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    Hi muffin. Appreciate your fighting spirit (as I know Koan and others do too :Retro smile:). That's good advice, above, but I have no idea where such data (do you mean data proving a coverup at CDC?) might be found. Do you?
  13. muffin

    muffin Senior Member

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    Guys

    Koan: Yup, we are indeed on the same page, no worries here! And I am quite glad we are on the same team!

    Others: There was no psychological battles in this thread that I am aware of. I did see some odd discussions that I did not understand in the UK Study discussion about psychological stuff, but I too did not understand what the issues were so I stayed away from that. I sort of just assumed that ALL of us CFIDS/ME sick KNEW that we were physically ill and it was NOT in our minds (inability to cope, etc).

    And now after a three hour nap I can't remember what Fresh Eyes said! I wish I had my brain back - or just half of it.

    No, we can not fight eachother. I think that sometimes we get mixed up and it sounds like we are disagreeing but really we are mixed up! This is the internet and we can't see eachother or body signals, etc. Also, some of our brains are not working correctly and I know that I read and say things that are taken by others as sooo not what I meant and then the problems start.
    I have gone back and read comments that I made and am amazed at how garbled and rambling I have been.

    Anyway, before I keep going with the odd rambling let me just say that I agree we can not fight eachother. We have far bigger enemies to take on and use what little energy and brain power we have including trying to live some sort of a life, struggling with money/family/doctors, and hitting back at Reeves and Wessely.

    Stay WARM everyone!
  14. Koan

    Koan Be the change.

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    What Muffin said!

    :hug:
  15. Kati

    Kati Patient in training

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    Group hug!!!! :hug:
  16. muffin

    muffin Senior Member

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    Koan and Kati!

    You guys are great!!!! Love and big hugs to you both!!!
  17. JustJack

    JustJack put on yer dancin' shoes

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    You guys are great, can I say that too? I am so new here and keep trying to understand who is who and not just by the # of posts they have and the amount of time spent on the forum. I did not mean anything about this thread, but more about the anxiety created by the XMRV battle that will continue. Koan, Kati, Muffin, fresheyes, I have a feeling we are all so much the same, missing out on the life we'd like to be living. I am here, and support from me will be ongoing too. I apologize if I said anything weird, I am weird now in my so called life.

    xoxo
    JJ in Sac:cool:
  18. Marylib

    Marylib Senior Member

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    for JJ

    Hi JJ,

    Me too. Of course, I was weird in my other life too. And probably the one before that...

    Lovely to see all of you here!:hug:
  19. JustJack

    JustJack put on yer dancin' shoes

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    Thanks Marylib, sometimes I get so lonely, not having anyone in my own life who understands ME/CFS. Strange and difficult to live for the last 31 years with an illness that altered everything I thought i wanted. Now, of course, I was also weird in my "other" life, as well as now!

    I still that I am a princess, and that goes way, way back:cool:. Except , that I was a messenger bird once LOL.
    Maybe that is why I have been such a good actress in this life...trying to get everyone to "pay attention". I have a play started called..."Enough about you, Back to Me!"

    JJ in Sac:victory:
  20. starryeyes

    starryeyes Senior Member

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    :hug: Big hugs everyone!

    You're not weird at all to me JJ. Then again, I've been told I'm weird too. lol

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