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Lean in*: the IOM, Wikipedia and a bit more legal

January 31, 2014

 

“About”

I have recently updated and expanded the “About” section of this blog for the benefit of both new and existing readers. Please feel free to visit it for more information.

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The Institute of Medicine’s (IOM’s) Committee for Diagnostic Criteria for ME/CFS – Public Information-gathering Session, 27 January 2014, Washington, DC (NB. the IOM was renamed the National Academy of Medicine in 2016) 

The controversial background to the recent tasking of the IOM by the US Department of Health and Human Services (HHS) to create a new definition of ME/CFS is very ably described in this blog post by Erica Verrillo  Briefly, the process by which this took place appeared excessively rushed and lacking transparency. The ME/CFS patient community has generally speaking been deeply concerned by this for several reasons:

  1. There are already two good case definitions available in the Canadian Consensus Criteria and the International Consensus Criteria, both of which are acceptable to most patients and ME/CFS expert practitioners (but not. it would seem, by state institutions), therefore:-
  2. The IOM contract is wasting US$1 million. This is about 20% of the paltry $5 million budget assigned to this illness. Apparently male-pattern baldness gets $18 million (thanks to Dr Nancy Klimas for that little gem).
  3. Clinical case definition is not a normal part of the IOM’s remit. The only other example of which I am aware was their astonishing result with Gulf War Illness (GWI) in 2013, a complex condition with many similarities to ME/CFS. The IOM’s new definition? “Chronic multi-symptom illness”. The outraged Gulf War veterans are now desperately engaged in trying to unscramble that disaster.

One half-day segment of the 2-day Committee meeting was the only part made available to the public. I watched the live webcast and was hoping that the videos would be made available by the time I published this post. [UPDATE: 2 hours after this post went live, they duly appeared here.] The meeting agenda is here ; as you can see, the second half of the meeting was given over to presentations by ME/CFS patients/advocates (7) and members of the public (15) ie. more advocates, many of whom are  living with the illness themselves. This makes their appearances (some live and some online) and the excellent quality of their presentations even more astounding.

I must stress that my observations are purely subjective and working from memory; my vantage point was limited to the scope of the fixed webcams in the room. However, two significant procedural aspects struck me as I watched the webcast. Firstly, that the spirit of the First Amendment  (similar to Article 10 of the European Convention on Human Rights) seemed to have been firmly locked out of the room. The proceedings appeared rigidly-controlled and exclusionary. Secondly, the atmosphere in the room felt sterile, devoid of empathy and compassion. I watched a few appalling moments (as, I’m sure, did many others) as a wheelchair-bound presenter struggled to take her place at the table (she couldn’t reach the podium), trying to move obstructions and set up her presentation kit with no external assistance. At that point, other patient-advocates rushed from their places (at the outside edges of the room) to help her and she eventually overcame the patently disabled-unfriendly environment.

The patients/advocates leaned in with great courage and dignity. However, in spite of lip service to the contrary (see Dr Nancy Lee’s remarks here), they seemed to be unwelcome and unheard (there were very few questions from the Committee members). Does a constitutional right to freedom of expression have any meaning in the absence of a subsidiary right to be listened to by the state which should be upholding those rights?

So why does this meeting matter for anyone outside the US?

Because what happens in the US will have a profound knock-on effect on the global ME/CFS community, no matter where we live. Because the US has a large community of exceptionally active and eloquent patients/advocates. Because, over the last half-century, we have learnt to our cost that the definition of a disease will dictate its perception, research, diagnosis and treatment. Because we are all connected.

It’s pretty much open season for conspiracy theorists now.

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Some of the advocates have been generous enough to make texts of their presentations available via websites and blogs. I appreciate that there is a lot of reading here but even by looking at just one you will probably learn something you didn’t know before. I did. The saddest thing of all is that almost everything you will read here has been repeated over and over again for many years and yet we still have no appropriate model for dealing with ME/CFS in any country in the world.

The presentation links below are alphabetical by name. There are differences between their approaches but I would not endorse any one above the others. I have nothing but admiration and gratitude for everyone who spent their precious time, money and energy preparing for and attending this meeting.

Jeannette Burmeister 

Derek Enlander (delivered by Jay Spero)

Mindy Kitei

Phoenix Rising (website statement)

Mary Schweitzer/Pat Fero

Jennifer Spotila 

Maryann Spurgin (delivered by Charlotte von Salis)

Charlotte von Salis

NOTE: As far as I can make out, everything in these links has already been made available to the public. It was not feasible for me to contact everyone individually for clearance to post. However, if any of the people named above object to the inclusion of their statements, then please contact me (see “About” for details) and I will remove it.

Wikipedia; the importance of definitions. Who will take up the challenge?  

Dr Leonard Jason reminded us of the importance of naming in his recent (short) blog post “Diseases can stigmatize” . In my previous post, I mentioned that I had a problem with using Wikipedia as a reference for ME/CFS because, if you enter “Myalgic Encephalomyelitis” into its search box, you are automatically redirected to “Chronic Fatigue Syndrome“. This was never acceptable. But, of course, as one commenter pointed out recently, “Wikipedia is editable”.

There have been unsuccessful attempts by patients in the past to edit the Wikipedia Chronic Fatigue Syndrome entry. I think the time has come again for someone else to give it another go (or perhaps someone recently has and has a story to tell about the experience?). This is not a challenge which I could take up as I do not have either the medical or technical expertise which would be required to make a proper attempt. However, if anyone would like to give it a go then I would love to hear about it in due course.

A word of caution: I think it would need a team of at least two people, preferably one person with the requisite medical knowledge and one with technical/Wiki experience so that they can give it their best shot. It could take some time but, if properly pursued, the result could be either a proper stand-alone “Myalgic Encephalomyelitis” entry on the internet’s greatest information resource or a documented account of how it was impossible to create a legitimate entry for this much-maligned illness. This would create a platform for the matter to then be formally be raised with Wikipedia and generate media interest but, for that to work, it must be as professional and watertight as possible. Please note: I do not intend to orchestrate this challenge; I simply throw it out in case anyone wants to run with it.

NOTE: the person who made the previous Wiki-attempt might be willing to provide some background information but doesn’t wish to be actively involved in trying again. I can supply further details if anyone wants to pursue this further.

Legal loose ends

I’m conscious that in previous posts, I have mentioned the possibility of legal routes to further the cause of proper recognition for ME/CFS patients and their illness. I have dealt with this issue in a fairly perfunctory fashion as it is a huge and complex area. It is a matter which is constantly in the back of my mind but which I am unlikely to have the energy to explore here in the foreseeable future.

However, for those who are interested, I would draw your attention to the excellent UK Human Rights Blog which explains in simple language the process of Human Rights litigation in countries which have signed up to the European Convention on Human Rights.  While HR legislation is only one component of the mechanism which might be used to challenge the state on the rights of ME/CFS patients, it is nevertheless an important and fascinating area.

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* Lean In” – by Sheryl Sandberg, 2013

45 Comments leave one →
  1. January 31, 2014 13:50

    Reblogged this on Short Blogs for the Distracted……….

    Like

  2. Alex Young aka alex3619 permalink
    February 1, 2014 04:43

    Many teams and individuals have tried to alter the Wikipedia entry, with variable success, but usually its changed back in a short time. This has also been discussed many times, including in Hooper’s Magical Medicine.

    Like

    • February 1, 2014 11:42

      Thank you for your comment, Alex.

      “Magical Medicine” was published 4 years ago, in 2010. The attempt which I was referring to was more recent than that. It was unsuccessful for a variety of reasons. However, the person who initiated it believes that it would be worth another shot. If it failed again, that would still provide a vehicle from which to pursue the matter further with Wikipedia (if properly executed and documented) and to generate media attention.

      I appreciate your interest. Best wishes.

      Like

  3. February 1, 2014 10:52

    Thank you for explaining this so well, Valerie. If you want to see the videos, you will find a full list on MECFSForums, in a “sticky” thread at the top of the Advocacy News Section. Here is a link which may work: http://www.mecfsforums.com/index.php/topic,19127.0.html There is a listing of the people who spoke at the meeting, with links to their written comments as well as the videos. These links are available to anyone; you do not need to be a member of MECFSForums to use them.

    Patricia Carter
    Wildaisy, Admin.
    http://www.mecfsforums.com

    Like

    • February 1, 2014 11:56

      Thank you so much for this, Patricia. I saw that the videos of the meeting had been made available about 2 hours after I published this post.

      At the moment, my links on this blog are still dead but your link to the mecfsforums IS working so hopefully readers can follow it. I’m very grateful for your help.

      Thank you for all your work for the ME/CFS community.

      Best wishes.

      Like

  4. February 1, 2014 12:01

    Thank you for all your work, Valerie. It helps all of us.

    I tried the link in my comment above, and it worked for me. Hopefully,, it may work for other people too.

    Like

    • February 1, 2014 12:06

      Thanks, Patricia. I just edited my first reply (see above) as I also discovered that your link works! (but mine still don’t)

      I’ve edited the text of the post accordingly.

      Like

  5. Jono permalink
    February 1, 2014 22:49

    Dear Valerie,
    thank you for your continued clarity & hard work on this most difficult of subjects. I will view every one of your fixed links!

    Like

  6. February 3, 2014 13:04

    I’m an occasional editor of the Wikipedia CFS article. While it is possible to make small improvements, attempting major change to the current text is likely to merely reproduce past conflicts. It’s easy to be cynical about Wikipedia, but it is what it is, and only by understanding how it operates can one effectively engage with it.

    Wikipedia is a Rules Based System – it can also be characterised as an MMPORG (massively multiplayer online role-playing game) – where the rules are somewhat plastic relative to the consensus view (group hierarchies apply) of involved editors (players). Of course one can say ‘not fair’, but Wikipedia doesn’t operate on fairness but rather a sophist’s promulgation of The Rules.

    For anything medical, the operative Rules are 1) source material is absolute 2) source material must abide by MEDRS – http://en.wikipedia.org/wiki/Wikipedia:Medrs . Essentially this means that any changes, additions and/or subtractions to/from the existing CFS article must be supported by:

    literature reviews or systematic reviews [which are] published in reputable medical journals, academic and professional books written by experts in the relevant field and from a respected publisher, AND medical guidelines or position statements from nationally or internationally recognised expert bodies.

    If the material one wants to appear in the CFS article isn’t sourced in this way, then it will not survive any attempted edit. Trading research papers will not work – sources need to be major reviews or ‘expert body’ publications. For anything controversial it’s advisable to discuss the proposed changes on the article’s talk page, and to treat other editors as though they are reasonable people, you don’t win friends on wikipedia by outright conflict (unless you already have lots of friends). Wikipedia has an arcane ‘conflict resolution’ process – I’d recommend avoidance of any reliance on that unless the object is to test ones sanity.

    Like

    • February 3, 2014 17:50

      Thank you for your comments and helpful explanation, IVI.

      I am a regular user, supporter and financial contributor to Wikipedia. I have never attempted to edit any entries but I have a general understanding of its methods and policies.

      I realise that Wikipedia’s “Chronic Fatigue Syndrome” entry is unlikely to be amenable to further editing. However, my interest focusses more on whether or not there could or should be a separate entry for “Myalgic Encephalomyelitis” (ME). There are valid and supportable reasons why ME could merit its own entry although they would be part of a separate discussion.

      You will have noticed that, in my post above, I have stipulated that any effort to pursue this idea should “as professional and watertight as possible” ie. capable of withstanding academic, medical and technical scrutiny.

      There is a fine line between robust moderation and censorship. I would be saddened to conclude that Wikipedia’s moderators prefer to opt for the second rather than the first in the event of “conflict”.

      Thank you for your interest and for taking the time to comment.

      Like

      • February 3, 2014 20:06

        Valerie,

        Please do not contribute to Wikipedia. If you read my comment here, you will understand why. Why not donate that money to medical research or lobbying for ME? It would actually do good then. If you are not convinced after reading this comment, just go read the entry on Simon Wessely. I haven’t read it since before he was knighted and made head of the royal psychiatric society, and even then it made him out to be a holy man.

        IVI is right. Those are the rules and they can’t be flouted unless you want your edit to be immediately deleted.

        The guidelines say expressly they are not interested in the truth, but instead in what is written in the sources they like. They say this is because they are an encyclopedia.

        I’m pretty sure that if something you are adding to or changing in the article is a non-medical issue, you can use a (respected) newspaper (or very authoritative blog). Some issues that do or should appear in the article are non-medical such as the political interference with the science.

        You could also use an authoritative textbook, but believe me, there are none that are substantially accurate.

        Fortunately there is substantially more material that fit under one of these rubrics than in the past. Not too many years ago there was next to nothing. Now things like the CCC, the IACFSME primer, the statement(s) on the medicine of ME on the IACFSME website. The other editors on there have been against ICC and CCC material being included, bc CCC was in a peer-review journal, but not one listed in Medscape, I think it is. Now that more scientists and clinicians are using CCC, it maybe easier. They have been resistant to stuff from IACFSME even, but we could probably get them to accept it.

        btw, you are not allowed to recruit people outside wikipedia to an article which is totally ridiculous. I have been “busted” for this by a very angry editor on the CFS page. But, you are allowed to PAY people to edit entries, but I don’t see how you can do this without first ‘recruiting’ them. You couldn’t make this nonsense up.

        They will definitely not allow another page for M.E. that has been tried over and over.

        That said, it is very important to edit the “CFS” entry to get more accurate info in. Remember, I can’t try to recruit anyone, so I can’t say any more.

        Like

      • February 3, 2014 20:50

        Thank you for your comments, Justin. I appreciate your input.

        Best wishes.

        Like

      • February 4, 2014 10:38

        Creating a new and separate Wikipedia article for M.E is constrained by the same limitations that apply to changing the existing CFS article, with the additional hurdles that apply to new article creation. There is (IMO) no chance of clearing those hurdles without the prior adoption of M.E as a distinct disease entity, at Governmental level in at least one large, developed nation.

        The IOM process when published will certainly need to be reflected in the CFS article, but even were the IOM to recommend M.E as a separate entity to CFS, there may remain resitance to a new Wikipedia article on M.E until there is a body of MEDRS qualifying material on M.E under the IOM recommendation.

        While I’m not a huge fan of Wikipedia, from a pragmatic perspective I think that positive engagement by M.E/CFS affected people with the editing process can be worthwhile. The CFS page on the Engish language Wikipedia gets 2,000 views per day ! That’s a large body of potential advocacy. There’s nothing wrong with encouraging people to participate in Wikipedia, nor even to take an interest in a particular page. What is not acceptable to the main body of Wikipedia editors is any attempt to do a hit and run on the system by a group of people with a narrow objective. Recruiting for that is strictly forbidden. And such attempts will inevitably fail and only create animosity and distrust around all aspects of editing the target articles, making more modest progress also impossible.

        Like

      • February 4, 2014 15:43

        Thank you for your reply, IVI.

        I appreciate that, over the years, there have been a number of contentious attempts to edit the Wikipedia “Chronic Fatigue Syndrome” entry.

        However, I do note with some concern your apparent presumption that most of these efforts have a particular agenda which does not appear to accord with your own. That seems an unfortunate starting-point for any Wikipedia editor.

        Moderators of all online forums can exercise a high level of control over entries and discussions. Community standards require that they are thereby entrusted with an exceptionally high level of responsibility and discretion. Failure to meet those standards would be an unacceptable breach of trust and would rightly be condemned by the broader online community.

        I appreciate your input to this discussion.

        Like

  7. February 3, 2014 20:15

    If anyone can possibly help advocate, we need more help and this is a crucial time for us because of the IoM and two other processes going on. This is really more urgent right now than the Wikipedia entry, though that is important too.

    There are a limited number of people helping out and some of us are working ourselves into being sicker. So we really need your help.

    Please go PR, mecfsforums.com and/or the Facebook group, below:

    http://forums.phoenixrising.me/index.php?forums/institute-of-medicine-iom-government-contract.114/

    http://www.mecfsforums.com/index.php/board,27.0.html

    https://www.facebook.com/groups/USCFORME/

    Thanks,
    Justin

    Like

    • February 3, 2014 20:52

      Thank you for your comment and for providing these details, Justin. I’m grateful for your contribution.

      Best wishes.

      Like

  8. February 5, 2014 10:36

    VES wrote: “However, I do note with some concern your apparent presumption that most of these efforts have a particular agenda which does not appear to accord with your own. That seems an unfortunate starting-point for any Wikipedia editor.”

    I don’t understand what that relates to – I think I was fairly clear above that I was pointing up the ‘group’ values under which Wikipedia operates. Those values may not be fair, but it’s a case of recognising the operative realpolitik if one wants to make any progress at all. We all have our own agendas, Wikipedia operates as though (IMO, something of a conceit) that its systems and rules inhibit agenda driven editing. In that context it is not smart to turn up as a group of newly registered SPAs (Wiki jargon = Single Purpose Account) and try to use primary source material to construct an article that other editors regard as dubious.

    As I said I’m not a huge fan of Wikipedia, I think it was a grand idea that lost its way long ago, but thanks to Google which gave Wikipedia exceptional search prominence for Google’s own selfish interests, Wikipedia has become an important artefact of the Internet. Whether using it as reference or editing it, understanding Wikipedia’s benefits and limitations is essential. There’s no obvious benefit for energy sapped PWMEs putting effort into writing material that will fail to stick because it doesn’t stand up to the editing process. If others can come up with material that meets the MEDRS strictures, then as an editor I’d probably be very supportive. I have in the past sought to expand the boundaries of the existing article by having a section on Biomarker research – https://en.wikipedia.org/wiki/User:In_Vitro_Infidelium/sandbox – however, the classification ‘controversial’ (see:https://en.wikipedia.org/wiki/Wikipedia:List_of_controversial_issues ) makes it very difficult to achieve innovation in the structure of the CFS article. I do think that past edit warring over the article has been unhelpful in achieving a more informative presentation of M.E/CFS on Wikipedia. IMO it would be a shame to reinforce that problem with further contributions that only serve to alienate editors who are already suspicious of M.E/CFS advocacy. I don’t think I can usefully add further to this discusion, PWME shouldn’t be afraid of editing Wikipedia – but should familiarise themseves with how it works, and its operative cultural values if they are not to be disappointed at a lack of progress.

    Like

    • February 5, 2014 11:25

      Thank you for your response, IVI and I apologise if I misinterpreted your previous comment.

      I have learnt a lot from your input and I’m grateful you took the time to discuss the issues raised in my post. It appears that the effort involved in trying to make a fair and informed attempt at any edit on this topic is likely to be unsuccessful and therefore would not justify the energy input required.

      I still have one remaining idea but will mull it over for a while and see where I go with it. If you felt able to contact me via a private message (see “About” section for details) I would appreciate it – not for further discussion at the moment (I’ve had enough!) but simply to establish contact for future reference. However, I understand if you prefer not to discuss this any further and I appreciate your contribution anyway.

      Thank you again and I send you my best wishes.

      Valerie

      Like

  9. admindxrw permalink
    March 10, 2014 16:03

    Hi Valerie,

    A “stub” for a separate page for ME was created several years ago, I think by Guido den Broeder, ME/CVS Vereniging.

    The page was promptly deleted or merged with the existing CFS page. At that point, the CFS page was closely monitored by a number of Wiki admins, including Dr Jacob de Wolff (http://en.wikipedia.org/wiki/User:Jfdwolff ), a Dutch doctor working in an English hospital, who I see remains active on the CFS Talk page, and also by User, “sciencewatcher”, who also remains active. It’s a frustrating platform and I do not recommend.

    Suzy Chapman, Dx Revision Watch

    Like

    • March 10, 2014 16:16

      Thank you for that information, Suzy. As a result of this post, I have begun to understand just how bad the Wikipedia situation has become. I knew it was a problem but this was far worse than I had realised. I agree with your assessment of it as a platform.

      Your work via Dx Revision Watch is wonderful and I’m glad to have the opportunity to thank you for it. I’m sorry you are planning to cut back on it as that will be a great loss to our community but thank you for everything you have done. Anything further will be a great bonus!

      Very best wishes

      Like

  10. April 6, 2014 01:33

    There have been many attempts to create a ME lemma in en:Wikipedia, but not by me. I got banned years ago for even suggesting that ME and CFS are not the same thing. All my well-sourced edits to the CFS article, always sourced in accordance with the rules, got reverted, This was accompanied by many defamation attempts, deaths threats were made against me, and so on, you know the drill.

    Not much has changed; Phoenix Rising have banned me recently as well, for the same reason. Once again, the people in charge – no ME patients, they have all gone – behaved with extreme aggression.

    There is, however, a ME lemma in nl:Wikipedia. The place is almost abandoned, so there are large pockets now without the usual bullies. Wikipedia as a whole has been on the decline since 2008, compensated only by ever higher Google weights.

    Like

    • April 6, 2014 12:24

      Thank you, Guido. Best wishes.

      Like

    • justinreilly permalink
      April 6, 2014 12:44

      Guido,

      Years ago, I read through many of your very good discussions in the edit section of the CFS article. I was surprised to be informed at the time by an editor that you had been banned, so these older discussions of yours were not really ‘relevant’ to them.

      Sorry to hear you have been kicked off of PR now. I think the advocacy section of PR, in particular is notably poorer for having banned some good advocates.

      I haven’t seen you on the Facebook groups U.S. Campaign for Myalgic Encelphalomyelitis and Advocates 4 Justice 4 ME. The platform is not as ideal as PR, but this is where the action is now and we could really use your help, if you are willing. Also, a new website ME Advocacy seems to be the best platform and I hope ‘going forward’ it will be the place for us to organize and take action.

      Valerie, my memory is bad, but I am not sure I have seen you on these groups and I would love to see you there too if you can help out!

      Like

      • April 8, 2014 10:41

        Justin, I’ve applied for membership of both groups, but they don’t want me. Many ME groups on Facebook are run by the same handful of non-ME people, two of which entertain a vendetta against me for the same reason again.

        But trust me, these are not the groups where progress is made.

        Like

      • April 8, 2014 10:51

        Justin – thank you for your comment and suggestion regarding the groups you mentioned. I know of them but will look at them in more detail.

        At the moment I’m not up to taking on any more work but hopefully things will improve if I ease up for a bit.

        Best wishes and thanks for your interest and support.

        Like

  11. justinreilly permalink
    April 6, 2014 13:01

    IVI,

    I had said that I was ‘busted’ harshly for having tried to recruit people to edit the CFS article. You responded that they only ban people from organizing ‘hit and run’ edits on articles. That wasn’t what I was recruiting for.

    Rereading the relevant Wikipedia guidelines, I think my mistake was that I was urging people to both become involved editors who had familiarized themselves throughly with the rules, and also was encouraging people to come in who were familiar with the substantive material (science and other authoritative texts) on “CFS” to support but saying to them, ‘because we are so sick you may not want to take on another responsibility, but you can just come in and provide support for us with out getting bogged down in the minutiae of the guidelines.’

    I think this was interpreted as just bringing in what they call ‘meat puppets’. I think they reacted too harshly to this and I also feel there should be some allowance for our disability and all the fighting we have to do, so that we not be held to the most rigid standards. Maybe I could have worded it better to conform with the nominal language of the ‘guidelines.’

    At some point i will get more involved in the article and encourage everyone else to, even though it has been quite a slog to make progress in the article, as you note, a HUGE number of people read it, so it is very worth keeping at.

    Valerie, I urge you to get involved whenever you can with the CFS article. I think I may have said this earlier. Lawyerly thinking is extremely useful when trying to edit. Although they try to discourage “wikilawyering” unfortunately, they have set the ‘guidelines’ up for medical articles so that this is exactly what is required.

    Like

    • April 8, 2014 10:26

      Justin – thank you for your comment. It sounds like you had a terrible experience with Wikipedia and, while it’s useful to hear about it, I do feel very angry on your behalf at the way you were treated.

      I’m not up to getting involved myself at the moment but I haven’t completely dismissed all thoughts about how the problem might be addressed.

      Thanks again and very best wishes.

      Like

      • justinreilly permalink
        April 10, 2014 21:52

        Thanks for the nice words! While I was frustrated, I didn’t take it personally, so i wan’t much ‘anguished’.

        I may have said this before, but I am focusing almost totally (to the extent i am able to do advocacy; i am quite sick right now) on the IoM and other current US HHS initiatives to screw us. The primary strategy being trying to get congress to intervene.

        This is agreed among the community to be the very highest priority. So, if you and others can get involved and/or urge as many others to do so, it would be so great! Even people outside the US can help a lot (i think you said that you were unable to do much now bc of health, in which case, this is a plea for when you get better)

        Anyone who wants to help can go to Phoenixrising.me IoM Contract sub-forum.

        Thank you!

        Like

      • April 11, 2014 15:05

        Thank you, Justin. I can assure you I’m working on getting better as much as I can. I hope you are too!

        Best wishes

        Like

  12. April 10, 2014 21:58

    I don’t consider this the highest priority at all. We won’t accomplish anything by constantly reacting to what ‘the enemy’ is doing. We need to make progress ourselves. Then their house of cards will automatically collapse, as it did for MS, Parkinson, Alzheimer, etcetera.

    Like

    • justinreilly permalink
      April 10, 2014 22:30

      Guido, I see what you are saying, however I disagree. I think it is a good idea to scale back direct contact with HHS and it’s sub-agencies (though i think continuing to speak at CFSAC hearings is helpful) since they are dead set against doing bona fide science in ME. However, what the federal agencies do has a huge impact on us and always will, so I think it is essential for us to focus on forcing them to change; this would primarily be done by lobbying Congress to direct HHS to put out correct information and to appropriately fund bona fide biomes research. This can be done and it would take care of almost all of our problems either directly or indirectly.

      We cannot afford to just send in $20 from our social security checks forever to fund good research. This will not make progress quickly enough and is unsustainable. I do urge people to fundraise from ‘civilians’ (people without ME and institutions) since they can better shoulder the burden. However, I think our efforts and funds would get a much bigger bang for the buck by lobbying Congress (and probably other national legislatures).

      I have no idea how much patients are raising for ME research each year. Say it is $1M + $2-$3M(?) from the Hutchins foundation (not including money raised by CAA, which they will never use for its highest and best use). If that money or even half of it went to lobbying Congress (and perhaps other national legislatures), we would be in much better shape than we are now. This is a total guess, but i would think we would make immediate progress and after a few years of that, it seems reasonable we would be getting a minimum of $50 million in bona fide biomed research, plus a drastic reduction in misinformation spread by CDC; I think it’s entirely possible we could make even more progress than that in a few short years.

      Like

  13. justinreilly permalink
    April 10, 2014 22:11

    Let me add, we certainly can, if we come together, make significant improvements in the Wikipedia “CFS” article, which is extremely important because a HUGE number of people read this article and it is currently largely misleading. That will be a lot of work, but will get us much needed improvement, but only so far.

    What we really need concurrent to that effort is for experts to write REVIEW articles in Medline accessible journals and also chapters for medical textbooks. This is an almost totally neglected area and it is is incredibly important to change. If you know a physician or academic, please strongly urge them to write these pieces.

    Please contact me on phoenix rising or Facebook for more info.

    Like

  14. April 10, 2014 22:22

    Wikipedia is a dead end, and so is CFS. I’m currently writing a multidisciplinary guideline for ME, in accordance with the newest international standards. That beats a review.

    Like

    • justinreilly permalink
      April 10, 2014 23:54

      Great! Thank you, Guido.

      I strongly urge you to ‘partner’/affiliate with a high-profile science-oriented ME org for the org to adopt the guidelines as their own and/or try to publish in a PubMed journal (perhaps with an ME researcher as a nominal or substantial co-author). Then Wikipedia will recognize this as a ‘reliable source.’ Just my two cents.

      Like

  15. justinreilly permalink
    April 10, 2014 23:58

    We also need PubMed journal, ME org and med textbook chapter reviews and guidelines as important ends in themselves. You may know I review books on ME on Amazon. Of over 200 medical textbooks that reasonably should be expected to have a section on ME, I found that only 2 were substantially correct. All the rest had substantially incorrect sections or no mention at all of ME.

    Like

  16. justinreilly permalink
    April 11, 2014 00:06

    Guido, me again! As you know there is great resistance to publishing accurate information on ME. To that end, in addition to partnering with ME researchers and/or orgs, I suggest once you have finished a draft you invite other patient-experts such as Tom Kindlon, Dr. Chu, people on the science areas of phoenix rising, and other places to take a look at it, in private, and offer feedback. I think this would result in a big buy-in in the community so that people will do what they can to help you get published.

    I know you didn’t ask for feedback, but here’s some! I was disappointed in IACFSME’s seeming approval of GET. I would like it made clear that GET is strongly contraindicated (except perhaps in those already well on their way to recovery) and of course that PEM/PER is the cardinal feature. (alcohol intolerance also seems to be a feature that is almost universal in ME, but few other diseases and I wonder why this symptom is not made more of for diagnosis)

    Like

  17. April 11, 2014 00:29

    There is zero research into the effects of CBT and/or GET on ME that I am aware of (e.g., ME patients were excluded from the PACE trial), so these will hardly get a mention.

    Our first goal is to get support and recognition for the guideline in The Netherlands. We have a loose working group consisting of Dutch specialists from a variety of medical disciplines and aim to satisfy the quality criteria for the inclusion of the guideline in the new national register of approved guidelines.

    The guideline will be published by the Stichting ME Research.

    Like

  18. justinreilly permalink
    April 11, 2014 01:01

    Awesome! (fwiw my vote would be to still note that there is no research, but that there is a very strong theoretical, clinical and survey basis to deem GET strongly counter indicated in ME). Thanks and good luck!

    Like

  19. Deborah permalink
    April 22, 2014 03:56

    One of the major obstacles to documenting M.E. has been the years — indeed, decades — that major journal peer reviews have featured people determined to blackball entries that support biomedical causation and development for M.E. (and CFS in its indeterminate American existence.) This has certainly been true in the U.S.. Conversely, certain journals have been all too un-questioning in reviewing biopsychosocial papers, A.K.A. the PACE trial series. It does not take a great deal of force to tilt the peer-review process anywhere because peer reviewers are people with full-time jobs who can barely read the “scores” in papers let alone “re-play the games.” The process may have made sense in more leisurely times but it is severely tested at today’s pace.

    Like

Trackbacks

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