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ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
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The Shocking Truth

Discussion in 'Advocacy Projects' started by justinreilly, Feb 18, 2011.

  1. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    I really think there is a need for some documents concisely and clearly explaining the shocking truth of the whole sordid ME situation. It should be easy to read and engaging while also being meticulously accurate and throughly cited.

    These documents could be sent to congress, hhs, president and the equivalents in other countries, physicians, scientists and anyone else we wanted to inform. Links to or excerpts from these documents could be used in comments to papers, articles and blog posts on the web without having everyone have to compose a whole huge explanation every time- this is too tiring and inefficient and by doing it once (revising when needed) we could make sure it was entirely accurate and every single statement was cited to a reliable source.

    We would start with a short document of, say, a few paragraphs. Then additional documents each longer and/or more specialized could follow as resources allowed. (these could later be used as the starting point for articles in media and academic journals, speeches, book chapters and other communication).

    We did discuss this on another thread, but i don't think the discussion got far. If anyone has more info or leads on this topic, it would be appreciated.

    I could help on this, but ideally this would be spearheaded by someone else as i lack the time to coordinate this whole effort. If noone else leads this, I will probably eventually start this up myself. I hope that someone could start this asap though as this is extremely important, imo. This may be the best investment we can ever make.

    Is anyone interested in working on this?

    Does anyone know any good source material/ templates for this which are on topic and accurate? Source material/ templates should also be either persuasive, easy to read and/or well cited, hopefully all three. Of course Osler's Web, oslersweb.com and Magical Medicine would be used as sources; any one know of any additional documents that are more concise- for example Hillary Johnson's NYTimes Op-Ed piece "A Case of Chronic Denial".


    Edit: Potential Topics (and people interested in helping as health allows)

    - General paper on ME situation which covers: Why we need more funding and to what it should go; What is ME?; how we have been persecuted and the lies they have spread, etc.
    -- Drafting: Justin Reilly (US angle) (eventually contact Margaret Williams to see if she can help with UK angle)
    -- Knows about this topic/ topic 'specialist': Justin Reilly (US angle) (ultimate authority on US history: Hillary Johnson (not yet contacted))

    - ICD-10 CM (time sensitive; could be set in stone as early as 11/2011)

    - PACE Study a Complete Fraud (like the BMJ article on the Wakefield study)

    - PEM (and GET & CBT)

    - Definitions of ME and "CFS"

    - Business Case for Researching ME
    -- for Government (researching and treating)
    -- for Pharmaceutical Companies

    - War on ME science and patients

    - What is ME? (this topic has been covered well by others including CCC, Hummingbird, etc. so I consider it relatively lower priority)

    - Info for new patients



    Edit: Possible Sources:

    (1) Historical/ Political/ Sociological (main thrust of main document):

    (a) Books:
    Osler's Web

    (b) General Sources on Web:
    oslersweb.com:
    - http://oslersweb.com/
    -- http://oslersweb.com/blog.htm?post=604271

    "A Case of Chronic Denial" op-ed piece in NYTimes by Hillary Johnson:
    - http://www.nytimes.com/2009/10/21/opinion/21johnson.html

    MEAction.org.uk including "Magical Medicine" by Prof. Hooper:
    - http://meaction.org.uk/
    -- http://www.meactionuk.org.uk/wessely_speech_120594.htm

    InvestinME.org
    - http://investinme.org/

    Hummingbird on ME:
    - http://www.hfme.org/
    -- http://www.hfme.org/whatisme.htm

    Prof. Lenny Jason:
    - http://condor.depaul.edu/ljason/

    Angela Kennedy:
    - http://meagenda.files.wordpress.com/2007/10/psychparadigmkennedy.pdf

    CFSCentral.com:
    - http://cfscentral.com/

    Mary Schweitzer's Blog:
    - http://slightlyalive.blogspot.com/
    -- http://slightlyalive.blogspot.com/2...howComment=1298860977255#c5966750805471289094

    Congressional Hearing with CDC Chief and HHS Secy on ME misappropriations:
    CFIDS Chronicle, Vol. 13 No. 1 Winter 2000
    scroll down to "CDC investigation heat up again"
    - http://www.prohealth.com/library/showarticle.cfm?libid=8057


    (c) Government Reports:
    HHS Inspector General 1999 Report on CDC "CFS" Program Malfeasance:
    - http://oig.hhs.gov/oas/reports/region4/49804226.pdf

    GAO 2000 Report on CDC "CFS" Program Malfeasance:
    - http://www.gao.gov/new.items/he00098.pdf

    UK APPG on ME Reports:
    - http://www.appgme.org.uk/index.html


    (d) Videos:
    What About ME?:
    - http://www.whataboutme.biz/

    Primetime Live 1996:
    - http://www.rescindinc.org/primetime1996.wmv

    Dr. Anne McIntyre Interviews the boy Wessely had sectioned.
    - http://www.youtube.com/watch?v=OJmis85FM4s


    2. Medical:

    CCC paper in J of CFS, 2003:
    - http://www.mefmaction.net/documents/journal.pdf

    John Richardson:
    - Myalgic Encephalomyelitis: Guidelines for Doctors; J of Chronic Fatigue Syndrome, Vol. 10(1) 2002, pp. 65-80
    -- http://www.name-us.org/DefintionsPages/DefinitionsArticles/Richardson2002Guidelines.pdf

    - ME, BMJ 1978
    -- http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1604957/pdf/brmedj00128-0006b.pdf?forumid=331851


    Prof. Lenny Jason:
    - http://condor.depaul.edu/ljason/

    Dr. Deckoff-Jones' Blog:
    - http://treatingxmrv.blogspot.com/
    -- Snyderman, Mikovits Poster at XMRV Conference (5% of ME patients develop NHL):
    -- http://treatingxmrv.blogspot.com/2010/09/snydermanmikovits-poster-presentation.html
    -- MLVs found in human cancers since 1970s:
    -- http://treatingxmrv.blogspot.com/2011/05/aloha.html
    -- http://treatingxmrv.blogspot.com/2011/05/further-comments-from-dr-snyderman.html
    -- MLVs from vaccines as a potential cause of ME:
    -- http://treatingxmrv.blogspot.com/2011/03/random-thoughts.html
    -- http://treatingxmrv.blogspot.com/2011/03/science-fiction-or-science-fact.html

    SSA SS Ruling 99-2p (indicating signs of "CFS"):
    - http://www.ssa.gov/OP_Home/rulings/di/01/SSR99-02-di-01.html#FN5

    Twisk and Maes: Wessely's School's (bio)psychosocial model of ME:
    Twisk FNM, Maes M. A review on Cognitive Behavorial Therapy (CBT) and
    Graded Exercise Therapy (GET) in Myalgic Encephalomyelitis (ME) / Chronic
    Fatigue Syndrome (CFS): CBT/GET is not only ineffective and not
    evidencebased, but also potentially harmful for many patients with ME/CFS. Neuro
    Endocrinol Lett. 2009 Aug 26;30(3):284-299.
    - http://www.ncbi.nlm.nih.gov/pubmed/19855350

    Maes M, Twisk FNM. Chronic fatigue syndrome: la bte noire of the Belgian
    health care system. Neuro Endocrinol Lett. 2009 Aug 26;30(3):300-311.
    - http://www.ncbi.nlm.nih.gov/pubmed/19855351

    Twisk and Maes on Wessely's School's (bio)psychosocial model of ME:
    - http://www.biomedcentral.com/1741-7015/8/35

    Twisk and Maes: Why myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) may kill you: disorders in the inflammatory and oxidative and nitrosative stress (IO&NS) pathways may explain cardiovascular disorders in ME/CFS.
    - http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=ShowDetailView&TermToSearch=20038921


    B. D. Scott:
    - http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1699088/?page=1

    N. D. Compston, H. E. Dimsdale, A. M. Ramsay, and A. T. Richardson:
    - http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1699022/

    E. D. Acheson:
    - http://www.investinme.org/Documents...de Little Red Book for www.investinme.org.pdf
    - http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1698971/

    P H Gosling:
    - http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1699452/?tool=pmcentrez

    G J Purke:
    - http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1699458/?page=1

    E J Hopkins:
    - http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1699426/?tool=pmcentrez

    J F Galpine:
    - http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1699416/?tool=pmcentrez

    D C Poskanzer:
    - http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1700311/?tool=pmcentrez

    J G Parish:
    - http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1700986/?tool=pmcentrez



    3. Psychological & Psychiatric:

    Eleanor Stein, MD:
    ME/CFS Guidelines for Psychiatrists
    - http://sacfs.asn.au/download/guidelines_psychiatrists.pdf

    Why ME/CFS is not Psychiatric
    - http://esme-eu.com/getfile.php/Files/ME_CFS_not_Psychiatric_Dis.pdf



    4. Similar Efforts to Ours

    CFSUntied.com
    - http://cfsuntied.com/index.html

    Disapedia.com
    - http://www.disapedia.com/index.php?title=Myalgic_Encephalomyelitis_(ME):_an_American_view
  2. Marty

    Marty Senior Member

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    Justin, I'd suggest that we have explained ourselves to death for 20 years. The internet is loaded with beautifully written things. It is now time to put effort into actions that will cause consequences for change rather than throwing more paper at them. I'm repeating myself, but this is war, not an information campaign. We need to invest our thoughts into causing a complete reversal of politics at CDC. When the CDC supports us, our doctors, our friends, our families, and the world will hear them.

    I really support the idea of a protest at the CDC. I think it is long past due.
  3. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    I agree that we definitely need hardcore protests and media circuses and other actions that will cause consequences! You are right, this is definitely war.
  4. cigana

    cigana Senior Member

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    Hi Justin,

    What about Prof. Hooper's massive report? It is well referenced. Perhaps it's not "easy to read"?

    Cheers,

    Mark
  5. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    cigana- Yes, i agree. I mentioned it above. It's called Magical Medicine.
  6. boomer3

    boomer3

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    Justin, I agree we need the right document that could be used specifically for senior government officials in many countries - one that briefs them in a concise document easily read. We have hundreds of documents but we need a strategic document to inform them specifically. I think whoever writes it can't be too wordy and it would be great if someone such as Justin would be the final person to agree to the contents. I would think we would need reviewers and comments but not everyone's comments could automatically amend the document.
    Izola likes this.
  7. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    i agree that a full-on wiki document isn't ideal for these purposes as it needs a flow and readability that wiki docs lack. if people disagree substantially, on contents of the documents then i guess people can split up in a couple of groups and each draft their own.
  8. Esther12

    Esther12 Senior Member

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    It's intellectually worthwhile for all of us to try to work out exactly why we think CFS has been treated badly, and to try to rpesent our arguments in an easy to read and convincing manner, but I'm not sure if it will change much.

    I think we can all elarn from each other's arguements, and hopefully strengthen our own. I'd tend to assume that this is a better way of doing things than trying to get a group to all work together. Not sure though.
  9. floydguy

    floydguy Senior Member

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    The place where something like this could make a difference is with newbies and even long timers in dealing with their docs. The way symptoms and your condition is presented can make a huge difference in how you are dealt with.
  10. Enid

    Enid Senior Member

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    What a marvellous idea Justin. I assume you have considered The MEAction Site - Margaret Williams many writings (much hostorical). She's been working with/for Prof Hooper for decades and in the earlier days was forced to close her email because of abuse from the Psycho lobby. I'll have more of a look too. All the best.
  11. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    If individuals (or small groups) want to create such documents, then all the better.
  12. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Yes, I should have put MEAction down. Thanks for reminding me.
  13. Enid

    Enid Senior Member

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    And Invest in ME site too might be helpful too. They are our very best - organisers of London Conferences for at least ten years. And only bring the best - all your researchers (except of course Kenny Meileir).
  14. Nielk

    Nielk

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    I agree that a protest is long overdue and we should definitely go ahead with it as strongly as possible.

    This does not though preempt us to go ahead with the document that Justin suggests. It's true that similar papers have been written in the past but I think Justin is not thinking about a beautiful poem to elicit empathy.
    I think he is talking hard cold facts put into a concise well written mode with the history of all the misconduct against us.
    He is thinking of ending this same document to all government representatives, legislators, senators, The President and I would add any and all news media.

    I think that the more people could sign it the better. We can have one section for doctors who are on our side's signature.
    another section for patients' signatures and a third section for family member, friends and caretakers who are affected by our illness.

    I think the major reason that we are shunned is:

    #1 because they can. We are invisible to them and it has worked for them in the past

    #2 I strongly believe that the powerful lobby of the insurance companies with tons of money at their disposal
    are the ones who are financially backing all these studies that show that it's psychological or if we would only
    exercise, we would magically be cured. Worse yet, they tried to pin it on childhood trauma to be our major problem.

    #3 There is not much power from our end. No one important has stepped out and taken our cause as their own.

    #4 It is (as you all well know) very hard to "prove" that we are suffering from our symptoms. They are mostly self-reported
    and subjective. As was written in my rejected disability claim file " there is insufficient clinical information" to prove
    that I am restricted by any activity.

    #5 Most doctors are not interested in treating us or standing up for us because for them we are just a pain in the neck type
    of patient who they can't really cure and we keep coming back with more complaints which they can't treat.

    #6 This in my opinion is a big one. It is mostly a disease suffered by WOMEN. Sorry to say but, even in our day and age
    men, especially male doctors think of women as complainers and sufferers of depression.
    The first time I went to my internist complaining that I had a virus that won't leave me. I told him about my severe
    symptoms and how I could'nt even drag myself to the bus stop which was one block away go to work. I complained
    that I couldn't stand up for more than a few minutes or else I would collapse. I told him when I had to go to the
    copier at work, I couldn't stand waiting for the copies. I had to sit down and when I got home I would just collapse
    into bed. He replied with a smile and talking to me like I was a child that sometimes we are depressed but, we don't
    even realize that we are depressed and he gave me a prescription for an anti-depressant. This one act of his caused me
    years of suffering because not only did the anti-depressant that he prescribed not work but, he kept switching them on
    me and each one brought another set of adverse reactions. It took me years to get off them. I can pretty much
    guarantee that had my husband come in with the same complaints, he would have taken it seriously and had ordered
    a battery of tests. So the fact that the majority of patients are women definitely works against us.

    #7 I think by now, the medical establishment has shamed us into our illness. I for one, don't tell people what I'm suffering
    from because I have seen the reaction. They have shamed us into silence and we are not used to scream out and
    fight for our rights. We are afraid to be ridiculed.
    Izola likes this.
  15. markmc20001

    markmc20001 Guest

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    As you just pointed out, maybe the psychobabble studies are working to control public perception?
    Izola likes this.
  16. Marty

    Marty Senior Member

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    Nielk, no one would disagree one bit with any of your well-written statements. Can you say how one more document, on top of a pile of 20 years of documents, could change any of them?

    People keep thinking that throwing paper at CDC will make a difference, like stoning them to death with popcorn. The letters just go in the garbage. Why can't people realize that this is not an information campaign but a war of political will? If we focus our efforts on sending more paper, rather than on taking new actions that will cause a political consequence to the people at CDC, then we will have wasted our effort. And our effort is at a premium; we must think smart about what is the most efficient way of - literally - forcing them to change? It has got to be in their interest. It is obvious that what is in our interest doesn't influence them at all.

    It was just reported on ABC news that in Bahrain "...the crown prince offered to open a dialog with the protesters...get these protestors to go home." http://abcnews.go.com/ThisWeek/video/middle-east-revolutions-12959626 It is political expediency to maintain their power (CDC, insurance companies, shrinks, etc.). Sound familiar?
  17. Nielk

    Nielk

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    You are right Marty when you say that repeating ineffectual actions will not help.
    That's one of the definitions of insanity: repeating the same actions over an over again and expecting different reactions.
    I thought that the idea of getting so many signatures would wake up some of our representatives in Washington to try to do something about it. I guess I'm too naive.

    Yet, can you see us demonstrating with throwing stones, starting fires, marching with our fists up in the air?
    If we could do that, we wouldn't need anyone's help because we would be strong and cured.
    That's the quagmire that we are in.

    I am all for demonstrations as strongly as we can. Do you think that that will bring much different results?
    You really think that it's going to make the top news of the day that one hundred people in pyjamas sitting in front of the CDC
    demonstrated because they don't get enough attention from the CDC?

    How about getting one of the Pharmaceutical companies that manufacture strong anti-virals to get on our side. It's to their benefit to prove that we suffer from viral or retroviral problems because it would get them instantly thousands of orders for their product. As I see it, money talks and maybe that's a venue to look into.
  18. Marty

    Marty Senior Member

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    I so agree, Nielk. Especially since producing paper takes so much out of us. We can't afford actions that have been tried and failed, expecting that "my" letter will make a difference when no one else's, over 20 years, did. Letters to the publishers and bloggers and newsmakers make a difference; those people have not already been "informed" a thousand times.

    Now you are talking. It's a war; we need allies that benefit from the same things we do.

    We can't even be naive about protests; I know of a case where severely handicapped people protested outside the county executive building and the county executive refused to speak with them, even though they sat outside on the sidewalk for days in their wheelchairs. (The county executive might have won this fight, but I'll bet she lost a lot of future voters who sympathized with those severely disabled people.) And we know that we physically can't sustain a protest until we get the desired response from CDC. It certainly is a quagmire.

    These forums show that we are not at a loss for creative ideas or well-written pieces. What we don't have and desperately need are healthy leaders to implement them, and we have rarely had them.

    Do we quit? We can't afford to.

    Is it worth sacrificing our health to protest at the CDC to get the CDC website taken down? It is for me. People and doctors go to that website and don't look any further; at least we can stop that from happening.

    We do have national media on our side. (We used to do local media, but now I see how useless that is until we get the CDC to use biomedical validation.) If we dare to create an event, they come.

    First, though, patients have to be realistic. They have to believe the CDC; Unger has published psychobabble and defended it at CFSAC. We have to ACT UP against her and the boss that chose a Reeveite to continue the program.

    I hope we will see all the talent, that has gone into producing well-written words, converted to ACTIONS that are designed to make the CDC people so uncomfortable that they will change. We have social network capabilities that were never possible before, so we ought to be able to come up with ACTIONS that never existed before.
  19. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Yes, this 'dialogue' tactic is classic delaying and mollifying tactic, imo. If it leads to actual change, great, but i won't hold my breath.

    I agree that throwing paper at CDC and NIH will not make any real difference. It is a waste of effort. Throwing the right paper at their bosses- the american people (thru the media) congress and the president- may make a difference, if and only if, at least one of the four (public, media, congress and president) is MADE to pay attention. And I agree that the only way that i can think of to make the public and media pay attention is to do active, drastic things like highly visible protests and over-the-top media circuses, including actions in the mode of ACT UP. We have to be the guy that gets whispered at in the restaurant: "sit down, you're causing a scene!" If a few eggs get broken, so be it, we NEED to get this omelette cooked!

    Marty, when you say we need actions that hold political consequences, do you have additional ideas?

    An additional way to get attention would be to donate money to congressional campaigns to gain the ear of a member of congress.

    In either of these two scenarios, once the attention is got, it will help us a lot to have something to read that's concise, well argued, engaging, up-to-date and well-referenced. So they can check it out in a few minutes and go "looks like this checks out." then they go to the "other side and ask" "what about this and this" and they BS answers and it's apparent it's BS because of what they just read and then we get some real momentum.

    If there already exists documents like this, let me know. The less work the better.
  20. urbantravels

    urbantravels disjecta membra

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    Does ACT UP still exist, and can we join it? Serious question here.

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