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Is there another choice?: Collectively we can have medical and scientific impact.

Discussion in 'Advocacy Projects' started by alex3619, Mar 6, 2011.

  1. alex3619

    alex3619 Senior Member

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    This is for everyone interested in advancing ME/CFS advocacy by providing quality information.

    We have been trying to get information out for decades, but also trying to understand the science ourselves. There are numerous FAQ and database projects, none of which is yet universally utilized. Many of these are open and collaborative. The recent expansion of media public relations in ME/CFS is fantastic, but this is not the only avenue for educating others. This post also has a different focus from the Doctor Need to Know campaign by the MCWPA, but there is considerable convergence in goals.

    What I suspect we need is patient driven review papers of relevant issues including the science. Yet we have major problems with cognitive capacity, resource issues, and focus. What I would like to see is review papers so well written they could be published. There is such a wealth of data out there and it is being ignored.

    Simple FAQs are good for general information, but high quality review papers might be read by not just patients, but doctors and even researchers. There are numerous technical issues with this idea, which I have only just begun thinking about, but I would like to know if anyone thinks this has some merit, or has useful ideas.

    I have reasonable semantic memory and some science training, but my episodic memory is fubar. I can also only work limited hours. Many of you are in a similar position. There are, however, many talented and motivated patients out there.

    Even for those of you who might not have training in the areas we might want to write papers on, there is still much that can be contributed. Collectively, our talents, training, time, and reasoning capacity is much greater than any one of us. I have huge difficulty in doing some cognitive tasks that some of you probably find easy. The reverse is probably also true.

    We are so focussed on our weaknesses that we tend to overlook our strengths. I think we can do more than we have let ourselves believe. I cannot write all the articles I want to. Neither can you. Can it be done collectively?

    So what, exactly, am I talking about? I am not talking about sweeping articles, or answering simple questions. I am talking about dealing with complex issues using our collective capacities.

    Look at a typical thread in Phoenix Rising about any significant scientific or medical issues. Many of us do extensive literature searches, write detailed analyses, and make very insightful comments - not that we are always right, we are learning as we go with each and every topic.

    What if a thread topic that everyone thinks is of vital importance, became the focus of a review paper? What if on a very focussed topic we recruited a small group of collaborators? This could include people with different skill sets, so our weaknesses are covered, and our strengths maximized. It would not have hard deadlines - nobody is served by crashing their health.


    Possible topics include:

    A. What medium term goals should XMRV research be aiming for?

    B. Why is are the PACE trials so misleading? / What is wrong with PACE?

    C. What does the PCR data from XMRV studies really show, and what does it only imply?

    D. What immunologic findings in ME/CFS have been important recently?

    To this last you can substitute metabolic, proteomic or many other issues, such as:

    E. What does the new research on methylation protocols tell us?


    I am not saying this will work - I am saying we should at least discuss it. I have several projects I wanted to work on, but the expected completion date pushes out till next year with my capacities and resources.

    These are just suggested topics:

    1. Overview of arguments for and against XMRV involvement in ME/CFS.

    2. The Cohort Question - why PACE trial results are irrelevant to ME/CFS.

    3. Amnesia in ME/CFS. (This was going to be my first article, but so much has happened recently that I have downgraded its priority.)

    4. Masks. (How we wear masks to cope and avoid stress what benefits they have, and how this can inhibit advocacy.)

    In the near future I hope to discuss how we could go about this, and what we should avoid. Please provide any feedback that comes to mind. In particular I would like to know your opinion on whether or not this can be done, or am I just smoking wacky weed? The combined wisdom of the ME/CFS community vastly exceeds that of any one of us.

    Best wishes,
    Alex Young
     
  2. Jenny

    Jenny Senior Member

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    I think this is a great idea Alex.

    I have also been thinking recently that it would be great to have reviews of particular treatments and to have them regularly updated.

    For example:

    Does amalgam removal and chelation help? What type of chelation protocol has the most supporting evidence?

    Is curcumin an effective anti-inflammatory? If so what dose and brands are best?

    What evidence is there that ME patients have poor lymph flow? Does lymphatic drainage help?

    Other topics could include anti-virals, immune modulators etc.

    I would like to see reviews incorporating lit reviews and a summary of anecdotal evidence.

    For example, on curcumin:

    1. Review of lit on what curcumin is and why it might have anti-inflammatory activity

    2. Review of empirical work on it's effectiveness as an anti-inflammatory in ME, including what is known about dose and brand

    3. Review of anedotal evidence on efficacy in ME

    4. Conclusions

    It may be that curcumin isn't important enough to spend all this time on - we probably need to concentrate on treatments that theoretically could make a real difference. The topics would need to be chosen very carefully to merit such an investment in time and energy. I also liked all your suggestions Alex.

    It would be very important to keep reviews up to date as the field changes so quickly. This may be the hardest thing - it's easier to get motivated to start a review than keeping up the interest to update it.

    Reviewers would also need somehow to gain access to databases like PubMed.

    I was an academic psychologist before I had to take early retirement, so have experience in writing academic papers and supervising PhD research, and would be happy to be involved in some way.

    I fear all this may be much too ambitious, but as you say we have a huge amount of knowledge and expertise here to draw on. We might need to start with the wacky weed though!

    Jenny
     
  3. Enid

    Enid Senior Member

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    Sounds a major task Alex - such a wealth of information here by all who are able. Current research findings too. Anti virals that aid or no, supplements etc. Good luck - happy to join anything to help all.
     
  4. xchocoholic

    xchocoholic Senior Member

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    Great idea ... I used to write technical info on whatever computer project I was working on but I can't see that happening now. My OI affects my thinking too much to count on being clear headed. Well if nothing else my confidence in my ability to write is long GONE ... lol ...

    If you don't mind, I have a contribution to this logic though ...

    What about the Pink Elephant in the room ? Many of us are using non traditional medicine with some impressive results and YET ... our CFS medical leaders aren't holistic practitioners. And since they aren't holistic practitioners, their attempts at using these treatments are hit and miss. Unfortunately for us, their attempts, as evidenced by their admitted "cure" rate, are mostly misses ...

    IMHO, KDM and Myhill have the right ideas and have helped quite a few PWCs. Treating for leaky gut via dietary intervention including food intolerances and glycemic control, ALL nutritional deficiencies, parasites, and dysbiosis.

    Sadly, these ideas are being overlooked in favor of finding that one drug or one supplement or one protocal that's going to cure us ... .. Which it totally ridiculous since we don't all have the same identitical biochemical capabilities. IMHO, building on what they've figured out so far would solve the CFS mystery for those who haven't responded to what Dr. Myhill or KDM have do for these patients so far ...

    What really kills me about our CFS medical team approach to CFS is that these leaky gut tests ARE paid for by MEDICARE ... I could've had this testing back in 1992 if I'd been smart enough to see a holistic practitioner instead of a traditional one ...

    tc ... x

    PS. IMHO since our bodies are always trying to heal themselves and 80% of our immune systems are in our guts ... even if we have XMRV, LYME, etc, if we get our immune systems working, these will be dealt with too.
     
  5. insearchof

    insearchof Senior Member

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    Xchocoholic - your area of interest - non traditional medicine in CFS and building on existing protocols, might be an area you would like to explore, research and write up - as part of a colabrative venture of the ilk that Alex is proposing.

    I think it is a great idea Alex. Sorely needed. It would be useful for medical research - as well as advocacy efforts.

    I have given some thought to how this might be set up to minimise some risks associated with publication exercises as well as also serving broader operations.

    What I would like to see - either as a part of this forum or somewhere else online, is a place that had all relevant source information on a topic (raw material,catalogued into divisions ie: research - published and unpublished, journal articles, media articles) then perhaps another area that extracted all relevant facts from the source information on a particular topic -with footnoted references. There could also be a section for speculation/theory, similarly footnoted. A summary (which was updated) in each area (fact and speculation) would also be found in each area.

    Setting something up like that would:

    * provide a data base on information which could be used by all those researching and writing articles not only on that topic in question, but on other topics that might cross reference with it, and what is needed is pertinent facts only.

    * provide quick access to facts =for people to write up accurate pieces for advocacy/awareness raising or media releases or respond to published articles in the press or scientific journals that need quick timely responses.

    *be useful in double checking content of all articles (ie tracing back to source references and ensuring that a ''cut and paste'' from other articles has not occured - therefore minimising risk of allegations of plagerism /copyright breach) prior to intended publication and or use of such articles.

    So - people interested in a topic - say: XMRV and Contamination could contribute by going into the following areas designated to that topic and do any one or more of the following - as their time and energy allowed:

    a. post links to articles (raw source material)
    b. using raw source material, extract facts that can be verified from the article and post to the facts section - with footnote
    c. _" " extract speculation, opinion from the article and post in the speculation, opinion area -with footnote
    d. contribute to writing up summary or keeping it up to date.

    Just some thoughts.
     
  6. insearchof

    insearchof Senior Member

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    I wanted to bump this, as I think it is a good idea.

    My suggestions were taking a long term view of how this might be structured and it does seem like a lot of work.

    So I thought perhaps we could just make a start and let it evolve. Personally, I would like to put together fact sheets on different topics, (with references) that could then be used in a number of ways, including what Alex has proposed.

    Using XMRV as an example, fact sheets on XMRV and Prostate Cancer, XMRV and positive studies, XMRV and negative studies, XMRV and methodology, XMRV and contamination theories, Etc.

    There could be multiple fact sheets on multiple topics. Those with an interest in the topic could simply add to it over time and these sheets could be freely available to all.

    In terms of collaborative contribution, maybe we could employ the wiki technology to do this and copy the fact sheets at completion and have them posted in a dedicated part of the forum.

    Thoughts?
     
  7. invisible ME

    invisible ME

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    Hi all,

    Bob started a thread brainstorming ideas for collaborating writing here that I thought might be relevant.

    Alex, I love this idea. Thank you so much for putting it out there. We all know the obstacles that this disease creates for effective advocacy. Pooling our individual resources/strengths is imperative. There are already many great suggestions on this thread. An idea like this could move in many different directions, and hopefully that would allow many people to offer their own strengths and insights.

    I especially love this idea from insearchof. I'd love to see fact sheets (and possibly basic form letters, resources, research, advocacy "talking points", etc.) readily available for widespread use and distribution. Something that people could circulate, link to, pass on to doctors, family/friends, politicians, etc. Most importantly, these would need to be regularly updated, and heavily sourced.

    Thoughts on some possible ways forward?

    I would be excited to contribute.

    - invisible ME
     
  8. WillowJ

    WillowJ Senior Member

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    Alex, yes, I absolutely think we can do this, if we work together. Solid literature reviews in publications that doctors read are badly needed. We can't do a paper in a week or a month, but we can do this.
     
  9. caledonia

    caledonia

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    I was going to suggest using a wiki for this project also, but insearchof beat me to it.

    There is already a wiki section on this website. So that sounds like a no brainer to me.
     
  10. alex3619

    alex3619 Senior Member

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    Hi everyone,

    The next step is how do we do this? It isn't just about using a wiki, which might be a good idea, its about how do we move this idea forward? I haven't checked out privacy on wiki - we would need a private wiki/group/thread until we are ready to submit. I think submission should be based on majority vote - otherwise we will debate endlessly. There are other issues too. I suspect we might like to start a private group thread as a resource material for the wiki, in which people post their individual ideas on a specific topic and references etc. Once we have enough material to see the shape of the topic, we could then advance to writing the wiki document. Once we have a draft document, we could then have another private thread to discuss it.

    How many roadblocks or issues can everyone see that might stop a paper being finished? How do we get around them? These are all just ideas at the moment, I don't regard anything as definitely in or out, although we would be ill advised not to use the technology already available to us on PR or elsewhere.

    Let me put up a simple roadblock - if thirty people help write a paper, we can't list all the authors. How do we decide who to list, and still be fair? One way would be to list something like a research group, paper by paper, with a public list of who is in the group. So we might have say six authors listed and Phoenix Rising Research Group 27, for example. If including such a group is against publication rules, we could put them in acknowledgements instead.

    Another stumbling block is publication targets. A fact sheet is one thing, probably aimed at patients or doctors. A paper needs to be aimed at specific publications - we will need to research a target journal before finishing a paper.

    Bye
    Alex

    ps Project group 001 might be on how to use the paper writing wiki and other resources and guidelines for research and writing.
     
  11. insearchof

    insearchof Senior Member

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    Hi Alex et all

    Agree for need for privacy, especially if working on a paper that is to be submitted to a journal or as the basis for a sensitive media reply or press release. I don't know anything about wiki, but was wondering if this had a pass word function to lock down and or restrict access to a specific document? If so this might be useful for working on articles intended for publication.

    I understand and agree about the point you make regarding the different writing styles required depending on the target of publication. Ie writing for a journal requires a completely different style, than writing for the general population. My idea though, was to compile a boring fact sheet, which would be a continuous living document (updated with scientific fact), which will sit in a specific area of the wiki. That would be accompanied by a few rules ie: no duplication of fact, best references only (identify list of highest to lowest quality sources) etc. Then once that doc looked near completion, it could be cleaned up.

    Once there were a few of these in operation, you could have a couple of writers groups and people could participate in these according to skill set and interest. These might broadly be:

    Scientific and professional publications gp

    Journalist / mainstream media publications gp

    Allied Health Workers/ Profesionals Gp

    Advocacy / Awareness Raising Gp


    The writing groups would set the tone and stylistic requirements and other formalities associated with writing for those targeted audiences.

    People interested might belong to one or more of the writers groups. The groups might post topic ideas and vote on which article (s) to start on. They could then hunt around in the fact sheet area to assist in this task. Alternatively, these groups could feed back to the fact sheet area what their specific needs are and the fact gathers (hopefully all concerned) would set about compiling them.

    A couple of editor(s) or fact checker(s) would also be needed to ensure the final article is accurate, not misleading, and does not contain any accidental inclusions of material (ie cut and paste) from other authors work that would lead to plagiarism/breach of copyright claims and legal hassles.

    I think the idea of a group or syndicate name would be ideal, but where authorship is required, maybe it could be put to a democratic vote, where the number of authors is limited. Some might feel that those who worked more solidly on one paper deserve the kudos, and there are others who may not want their names published at all. So democratic vote might work.

    Copyright-With the fact sheets Consideration might like to be given to having these be free of copyright ownership, as well as the final documents produced by the writing groups themselves, to overcome the potential for messy disputes, otherwise in a collaborative project, you might need to get the written authorization of all those who contributed --before you could safely publish (although I dont know, but all contributors might have a copyright claim?)and that would be an admin nightmare, and if not attended to properly might create drama and bad blood and potential legal headaches (which no one wants, given the multiple variety we have to contend with having this illness anyhow:D)

    There does however remain the issue of whether and to what degree the owners of this site will have copyright claims to what is produced. That needs consideration. it may well already be spelt out in the forum somewhere. There is little point in a group deciding to relinqish copyright claims and putting in blood swear and tears only for a site owner to claim it -which could be used tor deny publication or distribution of an article in a certain journal or to a certain group (for whatever reason) or to sell the publication for profit, or have an item published in a journal or forum or in a way that upsets the authors/work horses. So that might need looking at.
    Perhaps someone here knowledgeable on copyright matters could chime in?

    I think that's enough from me for the moment.

    Does anyone know if there are collaborative writing groups online anywhere? Maybe we could have a look at their rules to get further insights.
     
  12. insearchof

    insearchof Senior Member

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    Hi Alex et al reading/interested in this project,

    In my travels today, I took a brief look at some of the publishing requirements of scientific journals, as well as their specific requirements and policies that must be met by intending authors.

    If you review these, they have specific specifications on authorship as to who, how many, who must be disclosed and how/where in the article, what will be required of them.

    PloS in its publishing guidelines (by way of example) requires authors to employ (amongst other matters) the Equator Network reporting guidelines and these in turn refer to another helpful set of guidelines (specific to report writing and publication) called the GLIS (Grey Literature International Steering Committee) guidelines

    BOth Equator Network and GLIS are worth taking a look at in terms of what is expected of scientific report writing and publication.

    Consequently, our ideas on who is to be named and or identified as author and or any rules we might be generally considering - might be trumped by these and or similar guidelines. Therefore, I think they (and others) are worth considering in terms of formulating rules for the purposes of this project and or to assist with general guidance in a project like this.


    Equator Network: Reporting Guidelines here: http://www.equator-network.org/resource-centre/library-of-health-research-reporting/reporting-guidelines/introduction-to-reporting-guidelines/


    Grey Literature International Steering Committee guidelines here: http://www.glisc.info


    Equator Network, seems like a great general resource site for this project/and budding scientific/medical writers. This is a list of indexed topics taken from their site:

    ISO
     
  13. pebble

    pebble Senior Member

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    Hi alex3619 and all who contributed,

    Love you ideas and this thread.

    This is exactly what the film Us Now encourages.

    It is free online, I am not selling it.

    It has so many ideas on collaboration and how to make better use of resources, strengths, interests and how best to share knowledge and information.

    Have you seen it?

    You are all clearly so intelligent.

    Intelligence is not our difficulty.

    Energy, concentration, memory, stamina and lack of resources are.

    We do not need information simplified but do need to find more efficient ways to compensate for our cognitive obstacles.

    I feel this film could really help.

    http://watch.usnowfilm.com/
     
  14. taniaaust1

    taniaaust1

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    Im really struggling to get throu this thread so are going to do little posts to things in parts to respond

    As far as how one could go about naming the authors of whatever review you do. Many of us (myself included) wouldnt care if we werent at all listed, getting facts out and attention out on things is the priority, not trying to be famous :p .

    I suggest that if a large group of people worked on a paper, to just put the names down of who did the most work on it (It will probably only come down to 1-3 people) .. and in recognition of everyone else.. use a psydosm (what's that word???) use a fake name.. everyone could just come under the same fake name. (If Wessely can get things published under fake names as he's done in the past.. why cant we just use a fake name to represent a large group of us).
     
  15. taniaaust1

    taniaaust1

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    You really need to work out a topic before anything else. Once topic is started out.. gathering the facts is stage 2 (that could be done in the wiki by making a page on choosen topic or several pages of things to support the choosen topic... all the messy discussion about it could take place in the linked wiki discussion to whatever page you are forming)... getting things neat in some kind of form stage 3 .. then developing that into the final product in the right format for whatever you are going to do with it.

    ((I do think the final format and tidying up if you wanted to publish it.. should be done privately (so may have to be done outside of PR? as i dont know anywhere here we could all just work on it privately as a group).. the rest of it, you'd get more help and imput if was done openly where anyone can pitch in to help))
     
  16. taniaaust1

    taniaaust1

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    I do have a question.. Do the medical and scientific journals accept reviews which are doing by the general public???
    .......................

    My suggestion is that if you want many joining in in this.. to pick something easy that CFSers wont be struggling to get their heads around to understand.. things like methylation as a main topic is like a topic which is like too much for many. Once one gets into things like immune abnormalities etc.. that too can get hard to understand.

    Also I suggest to pick something in which quite a few studies have been done on (to make it easier to review). Doing the review on something which would be a great interest to many would be best idea. (to encourage more people to give a hand.. and also to be more read once it was published)

    Ive spent 20 mins thinking of what would be one of the most easiest thing for people here to review which would also attract more attention outside this group and thought of "Supplementation in ME/CFS" .

    Leaves thread http://forums.phoenixrising.me/showthread.php?9410-List-your-3-favorite-supplements/page5 really interested me the other day esp since Vit B12 was helping so many of us.
    (I put the stats on that thread as it was quite astounding... I figure if supplements got reviewed from studies that have been done etc.. its bound to show vitamin B12 as the far winner and useful... This info could help many and get many medical people thinking why??? why is B12 helping some so many of us?)

    (suggestions could be made on why the supplements when reviewed are helping some CFS/ME patients).

    Would there also be able to put the results of leaves thread in a review of supplement studies done???????? eg the finding of these studies are backed by an unofficial CFS study done of ***number of people*** at phoneix rising in which those with CFS/ME were asked to list their top three supplements? Its a pity such good info comes out of discussions here at times and is never shared with those who could be helping others.

    Doing a review on supplements and hence B12.. would help our doctors, doctors like Dr Sarah Myhill, support them in what they are doing to help us. (For those who dont know, Sarah Myhill was in trouble for recommending about B12 injections for us on her site. I think they made her take the info off and have restricted her in how she can treat her CFS patients).

    I hate how most doctors (except our CFS specialists) poo ha us taking supplements and I'd would like to see B12 in forms right for us, listed as a treatment (not cure) along with their CBT and GET.

    To do a review on the supplement useage in CFS.. would involve us collecting all the studies on this and getting them together (so we can review them). Having these studies all gathered and sorted and put onto the wiki would be helpful to everyone to have that info together easily found and accessable. (so even if the review didnt get finished.. we would all still benefit from the work done).
    .........

    there's probably other good simple topics too which could be reviewed and could do much good.

    Maybe get together 3-5 topics which could be reviewed.. and have a vote on which one people would like to help on. The poll at this site could be used to find out which topic people prefered to help on and see made public/published somewhere.
     
  17. taniaaust1

    taniaaust1

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    I just thought of something else, thou im not too keen on it for explained reasons.

    treatments in CFS/ME could be reviewed (thou that may be harder then my other suggestion as that area is so huge if one wants to get into anything other then real shallowly. I wouldnt like to see GET and CBT studies reviewed without indepth discussion on the things we dont agree with in them eg the very sick dont do them, which would make it all controversial which could make any review we do harder to get published).

    I wish GET and CBT would just vanish from journals in connection to CFS/ME
     

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