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Project: THE WHOLE THING

Discussion in 'Advocacy Projects' started by Samuel, Feb 2, 2010.

  1. Advocate

    Advocate Senior Member

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    Hi Samuel,

    Have you looked around at sites for other diseases and found ones that you like? Are there any you could recommend that we look at?

    Are there any non-disease sites that you find particularly attractive? You mentioned quality writing, so I thought of the piece Laura Hillebrand wrote for the New Yorker and went to their website, thinking it might be a model. Nope.

    How about the website of the Immune Deficiency Foundation? It's patient oriented, very serious, very straight. Not defensive. There are probably a lot of disease website that could be discussed before planning one.

    I agree about the design of "name" site. It hurt my eyes.
  2. Advocate

    Advocate Senior Member

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    Hi Justin,

    I like your footnote suggestion. I'm glad you'll do what you can when you are able.
  3. Khalyal

    Khalyal Guest

    I love this concept, and Samuel...you have thought this out extremely well!

    I'm in. Whatever I can do to help!

    Khaly
  4. txfriend

    txfriend

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    Three Problems I See:

    Samuel, this is brilliant! Thank you so much for putting your little energy to such a
    daunting task, and thank your 'contact' for helping us do this.

    My problem is with the term ME. First, it is non-existent in the U.S., as far as I
    know. Secondly, the U.S. is used to the term CFS and many are even informed as to the controversies surrounding it, so I would like it to be used for THE WHOLE THING. Third and last is the fact that many articles that would be used as a citation would use the term CFS only; yes, some have CFS/ME since the IACFS started using it, but many older peer-reviewed articles use only CFS.

    The second problem is using CAA documents; too many of them have not been updated to reflect current science and peer-reviewed journal entries of research articles. I believe they will change these eventually, but until they are, I disagree about using them.

    The last problem I'm concerned about is that which is in Khaly's cfs-untied blog today about the ongoing process of the DSM5 now in critical mass stage, and which needs our immediate attention in order to keep CFS and many other true diseases from being thrown into Reeves' new wastbasket, and for which I am again calling for a Congressional Inquiry into the CDC's criminal obfuscation of the true nature of CFS, as Eric consistently reminds us.

    I fear 'too many irons in the fire'...many of us are already so stunned and burned out by the XMRV findings and those implications that I worry about the health of all of us as we try to do so much at once.

    If THE WHOLE THING could first give us everything we need to start a Congressional Inquiry, with citations and all, and if it could lead to a new beginning of awareness, then I believe THE WHOLE THING could carry on well into the future generations.

    I agree that we must be very clinical and scientific in our approach to both a C.I., and the message put out by THE WHOLE THING, and I know there are many here who can do that by accessing the appropriate cited literature. I am brand new on a PC, so don't know how to do that; but the above concerns I just had to express. Thank you all...:worried:
  5. biophile

    biophile Places I'd rather be.

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    MediaWiki software

    A website could be set up to use the same software that Wikipedia uses (MediaWiki), depending on the capabilities of the hosting service (ie Apache, MySQL, PHP). It is a powerful application designed for a project such as this, and it is free. I am somewhat familiar with the software and can only offer basic advice.

    http://www.mediawiki.org (also see the manual).

    Wiki-markup is relatively simple, and HTML-markup can also be used too. The MediaWiki installation does not need to take over the entire site. Other HTML pages, PDF files, JPG images etc can be stored separately on site (rather than uploaded into a database like on Wikipedia).

    The "Cite" and "ParserFunctions" extensions are required to have the same footnote/reference list style that Wikipedia uses, as well as the related templates (which can be imported from Wikipedia).

    http://www.mediawiki.org/wiki/Extension:Cite/Cite.php

    http://www.mediawiki.org/wiki/Extension:ParserFunctions

    Although the setup and learning curve may be difficult and time consuming at first (establishing user rights, security, policies and guidelines, etc), the end result is a Wikipedia-like website operated by ME/CFS patients and supporters.
  6. jace

    jace Off the fence

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    I love this idea! I have been thinking around a project (I've not got very far yet) with the working title of ME/CFS for dummies - that is only the working title, and I had the thought
    ' ME (the inside story) CFS '
    as a public label FWIW.

    I think it has to have both the terms ME and CFS in the title. My feeling is that many of us are suffering a disease who's basis is inflammation of the brain, and that that title is the most accurate we have at our disposal. However CFS is the label most of us are given, and is how the press and public know us, so it has to be included.

    I agree that each statement made has to be linked to solid research. Isn't the number of links included one of the ways to get high status, googlewise?

    The Nightingale document is excellent.

    Count me in.
  7. FernRhizome

    FernRhizome Senior Member

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    What you want is called a White Paper

    Samuel:
    This is a terrific idea and I think what you want to do (and your outline is excellent) is to create what is sometimes called a "White Paper" which can then be used for fundraising or for political use with legislators etc.

    Here is the description of a White Paper on wikipedia: http://en.wikipedia.org/wiki/White_paper

    I have an excellent example of a White Paper created by a Canadian patient support group and I will attach copies of it to this e-mail as it will give you an excellent format/example to follow. The organization is GPDA (Gastroparesis Dysmotilities Association. I am attaching two files. The first is a synopsis about what their white paper covers and why and what its uses are and the second is the white paper itself. This paper is a few years old but it's still an excellent format to follow. I think you'll see it is EXACTLY what you are after.

    I am tempted to post the "synopsis" right into this posting so everyone can see this is exactly what you are after...but it takes up a lot of space! The synopsis is 2 pages but the document is 15 pages. I think I'll go ahead and post the synopsis right in below in another posting.
    ~FernRhizome

    Attached Files:

  8. FernRhizome

    FernRhizome Senior Member

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    2 page White Paper synoposis example (see above for actual white paper)

    Here, as an example, is the 2-page text of the "synopsis" of a white paper (pdf file in my above posting). The backup document to this synopsis is listed above as well and it is 15 pages of clear, direct backup information to the synopsis. ~FernRhizome

    White Paper from the Gastroparesis Dysmotility Association in Canada

    Gastroparesis and Related Digestive Motility Diseases, a Medical Crisis.

    Prepared by:
    Gastroparesis and Dysmotilities Association (GPDA)

    August 19, 2003


    Synopsis

    The aim of this White Paper is to call attention to a very serious group of digestive disease neuromuscular disorders that for too long have received inadequate research funding. This White Paper is intended for wide dissemination among the House and Senate, the Director of the National Institutes of Health (NIH), and the Food and Drug Administration (FDA) Commissioner.

    This Paper serves to outline the scope of the crisis. The four main categories of severe paralytic digestive motility diseases specifically, gastroparesis, chronic intestinal pseudo-obstruction, colonic inertia, and achalasia cost U.S. taxpayers billions of dollars annually. Significant morbidity and mortality statistics exist for this group of digestive diseases.

    Furthermore, the Paper will help to inform government officials of the cost generated by human suffering, as well as of the impediments that exist, due to lack of FDA approval, to accessing the few treatment options currently available. These impediments raise the cost of health care and increase mortality.

    On May 17th, 2003 in Orlando, Florida, the First International Scientific Task Force on Gastroparesis was convened (see Appendix I). This scientific think-tank attempted to address the enormity of the problem surrounding the most common of the digestive neuromuscular diseases: gastroparesis. The task is daunting, since so little is known about gastroparesis and since limited resources exist to even outline its prevalence, let alone to search for effective treatments. Gastroparesis and the other related digestive motility* diseases share this paucity of scientific data and treatment options. Very little scientific headway has been made over the past 20 years in spite of the fact that collectively, these are not rare diseases.

    These diseases, afflicting men, women, and children, are in need of catch-up work to help redress the current situation. Very limited resources exist in the private sector to correct the crisis. Patients and families need hope that their government will provide the leadership to help advance the search for effective treatment options.

    This White Paper is very important and timely since government action can help advance the initiatives that have come out of the Task Force meeting.

    Page 2

    White Papers: Synopsis: Gastroparesis and Related Digestive Motility Diseases, a Medical Crisis August 19, 2003


    Quick Facts about the Digestive Motility Diseases Medical Crisis:

    Digestive motility diseases:
    Have mortality statistics;
    Are disabling;
    Cost taxpayers billions of dollars annually;
    Currently do not have any pharmacological therapies specifically tailored to them;
    The one effective treatment device is extraordinarily difficult to obtain as it is presently approved only under humanitarian release by the FDA. This lack of full approval increases health care costs and mortality rates;
    Pharmacological therapies that have been used in treating motility diseases, and found to be effective, are not available because they lack FDA approval;
    Social Security claims for disability are very difficult to obtain; this may be due in part to the lack of understanding by government officials regarding the seriousness of motility diseases;
    No consensus guidelines exist for adult motility diseases; hence misdiagnosis and mismanagement of these diseases frequently occurs;
    No standardization of diagnostic methods currently exists;
    No statistics exist to outline the extent of the problem;
    Few resources exist in the private sector to correct the crisis; and
    Very limited resources have been spent by the NIH investigating the pathobiology, especially for the adult and pediatric idiopathic group of digestive motility diseases.
    Finally: The US government through NASA has spent close to $20 million researching the effects of, and methods to ameliorate, motion sickness for space and military personnel. Motility patients live for years experiencing symptoms similar to motion sickness on a daily basis. This sum of money represents a greater amount than has been spent by the government on research into all of these lethal motility diseases. In 2000 the National Institutes of Health (NIH) spent $2 million on motility research (1), most of which was spent on basic research. Very few, if any, research dollars have been spent by the NIH on the search for effective treatment options for these digestive motility diseases.
    _______________________________________________________________________
    1. Report by Dr. Frank Hamilton (Branch Chief; Gastrointestinal Motility Program Director; Gastrointestinal Mucosa and Immunology Program Director; AIDS Program Director, NIDDK) to the First International Scientific Task Force on Gastroparesis, May 2003, Orlando, Florida.

    * The terms paralytic, motility and neuromuscular may be used interchangeably when describing this group of diseases.
  9. gracenote

    gracenote All shall be well . . .

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    jace,

    Thought you might like to see this. There is always room for improvement in representing our case in a more comprehensive / accurate way. I agree that we need to use both ME and CFS in whatever we do.


    0470117729.jpg
  10. jace

    jace Off the fence

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    Is there anything inside the cover?
  11. gracenote

    gracenote All shall be well . . .

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    It's not a made up cover. You can buy the book on amazon.com.
  12. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    I use "ME/CFIDS" in titles and the first mention because I think "CFS" is so degrading and don't want to perpetuate the meme; then I switch to only "ME". I do see the merit in starting off with ME/CFS for recognition value, but feel it should switch to ME after the first mention.

    Re:links
    You don't get any google points for linking out; just inbound links.
  13. Dr. Yes

    Dr. Yes Shame on You

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    Not in the "Oxford" version ;)
  14. Clarification on justinreilly's post: you do get Google points for internal links (that is to say, links pointing from one page to another one inside your site). But not external ones. They only give points to the site you've linked to.

    Rachel xx
  15. Angela

    Angela Guest

    I am very interested in this. I have a doc that is asking for all the information I can ring into him. Especially on how to get nutrients in me. I have tried things by mouth but he is thinking intrevenously. And if there was just one place to look how to treat us this would not be so difficult. I am definitely willing to help. I too research all the time. Thanks Angela
  16. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    @ Angela-
    It doesn't sound like this document would be aimed at treating physicians and detail treatment.
    You probably already know about these, but good docs for a doc are:
    -Carruthers et al.'s 2003 J of CFS consensus article
    -Consensus Manual for treating physicians from NJ Med School; 2002 (avail on NJ CFIDS support group website)
    -Fatigued to Fantastic book by J Teitelbaum
  17. Guido den Broeder

    Guido den Broeder *****

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    Yes, this is absolutely necessary. There are plenty of examples of attempts to present 'the whole thing' that got lost in personal theories or battles.

    It sounds like you are envisaging something in this style, but then more explanatory and the full hundreds of pages of it. That would be a major work. Only Byron Hyde's tome of 1992 comes to mind to compare this idea with.
  18. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    well, hundreds of pages would probably take us a little long if everything is cited. Anyway, as a paper for decision makers who are newbies to the world of ME, I would think it should not be overwhelmingly long. Maybe we could first publish one that was only a few pages and then later add to it to make too versions- a short one to apprise decision makers and a more detailed one for once they are interested.
  19. jace

    jace Off the fence

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    Short is sweet, initially. Pointers to more detailed stuff should be there too.. I should not be posting, I should be resting. Bless you all, and goodnight x

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