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Wikipedia entry for CFS

Discussion in 'General ME/CFS News' started by Persimmon, Dec 9, 2011.

  1. Persimmon

    Persimmon Senior Member

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    I've just had a look at Wikipedia's entry for Chronic Fatigue Syndrome, and was disappointed by some of the comments there - apologies if this topic has already been worked over. The entry is simply entitled Chronic Fatigue Syndrome - there is no separate page for ME or ME/CFS.

    It's commentary includes the following:

    "... multiple psychological and physiological factors may contribute to the development and maintenance of symptoms."
    (One of the two supporting citations is authored by Wessely, Sharpe and one other)
    &
    "A good outcome was associated with less fatigue severity at baseline, a sense of control over symptoms and not attributing illness to a physical cause."
    (The supporting citation was authored by Joyce & Hotopf, who have both co-authored papers with Wessely.)

    There are other classic Wesselyisms, and numerous citations of papers by Wesseley and his collaborators.

    Is there any prospect of getting this entry revised?
     
  2. max

    max *****

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    Hi Persimmon

    'tis a well trodden path you are embarking upon. I wish you all the good luck in the world - Wikipedia's entry concerning the illness is a tad bent to say the least - as an experiment, pop a comma or even a full stop into their version of events and it will be corrected within minutes.

    It is nothing more than a pleasure zone for Wessely and his followers - it is the last place to visit for unbiased advice - just ignore it, tell everyone you know to ignore it and hopefully one day in the not to distant future it will be removed, all of it.

    Whilst it is there, copy and paste the most offensive bits for your records - it will all add to the evidence when this cruel treatment of severely ill people gets its day in court.

    Hope this does not offend any one.
     
    WillowJ likes this.
  3. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    It's very important, imo, to work on this entry as most people go to wikipedia for any info on ME. It is difficult to get the truth on there as wikipedia itself says in its guidelines they are not interested in the truth :)Retro eek::eek:), only in what is said in what they called 'reliable sources'- which for ME mostly means wessely and co. sources.
     
  4. barbc56

    barbc56 Senior Member

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    Grrrrrrrr!!
     
  5. SilverbladeTE

    SilverbladeTE Senior Member

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    Somewhere near Glasgow, Scotland
    Been refraining from posting, but this is important, so will regretfully break my self imposed curfew on this and then go back to "lurk" mode.

    people need to be aware of just how serious in scope, how malign and real manipulation and conspiracies actually are, and a recent expose' by journalists in UK shows this to be true, whether people like it or not.

    In light of the "Hacking Scandal" and this item on how "lobbyists" edited wikipedia to hide/obfuscate reality for their "clients", people need to be aware that, considering the wealth/power of those who have vested interests to keep ME patients denied and neglected from treatment for thirty+ years, they are possibly able to have wikipedia and other outlets filled full of lies, crap, obfuscation etc all to bamboozle the public and prevent any united outrage/protest against their evil abuse of us...to avoid having to pay insurance claims, avoid civil or criminal court cases, to avoid change

    again "If you want to make enemies, try to change something", see how CDC behaved early on with HIV/AIDS, which cannot be blamd purely on bigotry alone, as the scope of the inactivity was too large. Lot of it's merely to do with despicable laziness, asinine greed and general gross incompetance of those at the top who often are gawd damn stupid.
    Same damn thing today, with ME, and some of the same damn people involved...oh I wonder why that is, hm?


    http://www.thebureauinvestigates.co...r-targeted-environmental-campaigners-website/




    It's all about "spin", damage control...giving the General Public "The Mushroom Treatment" and making them LIKE it.
    Long as John Q Citizen is ignorant, apathetic and kept powerless, they cannot threaten the "status quo", on any issue, this is what it's *ALL* about.
    Doesn't mean that there actually is some git altering ME/CFS wiki pages for a malign reason, but damn well proves it can be happening.
    So those with their head in the sand on such possibilities: grow up, wake up, and smell the coffee.

    Treating ME would cost insurance companies vast millions, but untreated it costs nations billions and having a large immuno-compromised community is a terrible risk to the entire populace (see how HIV lead to resistant-TB spread), that is one avenue of attack that should be used to breach this strangehold (bring this up in letters to your MPs/Congressmen etc)
    plus it's another part of the web of evil garbage that's destroying the very foundations of democratic support! Fewer and fewer people vote, because the crap goign on in politics like this, such as treatment of asbestos victims, Gulf War Syndrome etc etc all eats into any trust of governance.
    Being honest, exposing corrption/stupidty hurts in short term, but it encourages trust and therefor, strengthens Democracy: the Public on the other hand never forgets or forgives being LIED or being used and manipulated above anything else, they will CRUCIFY any politician who does that and who doesn't come clean.

    It's guaranteed that spinless bureaucrats and politicians who'd be exposed for having deliberately let people suffer and die, are desperate for all this not to come out.
    But the longer such scandals go on, the worse the eventual catastrophic "eruption" when it does come to light. It's like a volcano. :D

    See current appalling scandal in USA where US veterans remains were dumped in landfill sites, partially because of deliberate censorship/banning of any reporting, journalism and thus oversight of the system by the Bush Administration. ie secrecy inevitably breeds corruption, screw ups, and worse, and thus bites the arse of those stupid enough to sanction, start or be involved with such.
    http://www.bbc.co.uk/news/world-us-canada-16081240
    That is going to bring down a great many powerful people, merely because they DIDN'T act when they should have not through direct involvement.

    ie, to any reading this who maybe in such positions of power/cause:
    either fix the problem (way ME/CFS patients and facts have been abused and covered up) today , and earn praise from some, or be damned by all and made truly unemployable or even incarcerated.
    See what's happening to those involved in the "Hacking Scandal" as to consequences, even for those innocent of any direct involvement, and regarding those who think their power makes them immune from consequences, or uncaring of fixing problems. Eventually, they ge tcaught, they get blamed, they suffer the consequences.


    "I will not be filed, stamped, indexed, briefed, debriefed or NUMBERED!"

    [​IMG]
     
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  6. alex3619

    alex3619 Senior Member

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    Hi, some years ago I sent an alert via co-cure on the inaccuracies and spin on wikipedia regarding CFS. Its a propaganda piece in my view, and important information on cutting edge research is conspicuously absent. Many people subsequently contacted me saying how they tried to change it but it always gets changed back. There is no diversity of opinion on this article in wikipedia, and the major controversy is squashed. Bye, Alex
     
    WillowJ likes this.
  7. Jenny

    Jenny Senior Member

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    Yep - yesterday I tried to change the statement that CBT and GET were 'moderately effective' treatments. I thought I would just try a minor and perhaps uncontroversial change to see what happened. (The problem is that unless you change all the citations any change needs to be consistent with the references cited,which of course are highly selective.) So I changed it to 'marginally helpful'. When I looked just now I saw it's been changed back.

    Jenny
     
  8. Enid

    Enid Senior Member

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    Well bang goes any donation they appeal for - so far out and behind the times on this one - one wonders about accuracy and bias throughout their apparently knowledgeable information.
     
  9. taniaaust1

    taniaaust1 Senior Member

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    I noticed you were there.

    Take care as it is in wiki rules that one isnt allowed to gather a group up to try to change things, they can ban your account for it. So as much as its all biased there and needs to be changed. We cant work on it as a group. But yeah the more who post there, the less biased the info will be as it is consensus.
    .....

    To all

    I noticed thou that a small group of people completely controlling the info there (one can check the history of the posters and the ones who are removing what I put there are in the top 15 posters for that web page and have been there for YEARS). So right now, in a way that isnt actually consensus as when anyone new starts to post, those who have been there for years controlling the page.. immediately removed the posts often for no good reason at all (and probably also putting off any new posters so actually stopping what is a true public consensus being reach). I even someone lie to me, with to the reasons why my post was removed the post to make their reason sound better.

    eg there is a section there for the different things CFS is called and thou the term "chronic fatigue immunity dysfunction sydrome" is said in that section.. I tried to abbrev it next to it in brackets next to the long term as how often is that full term used? The shortened version is verbally said just as much, many usually when it comes to saying names say "CFIDS" (prounouned "See fids") .. anyway that was removed, (in that case they could use the rule that abbrevation only to be put once in the whole article and of cause it was in the beginning of the whole page, but I thought it was relevent to have the other in the paragraph of what CFS is called as it is called this at times). Then when the person removed that, they said I'd had it in "history" section which I didnt have in that part at all.

    Then they went and removed someone elses abbreviation right after mine in a way in which it appeared I'd posted done that too (I think they did that right after mine to try to make me look bad).

    It is wiki rules thou that it has to be done by general consensus.

    I also put in the differential diagnoses section with a link to the ME, the CDC quote showing their view that CFS and ME wasnt the same. Amazingly that too got instantly removed on the grounds of "controversy", thou of cause CDC source thou we dont always like it, it backed up exactly what I said, it just wasnt of the kind of CDC quote that group there tends to like

    The CDC quote could be ONE of the things used to help argue that a ME page needs to be set up completely different to the CFS page or to have at least very clear on the main CFS that MANY even some very big orgs. do not see them as being the same illness.

    It was highly biased for those there to keep CDC quotes they like but remove those they dont like, they are actually in breach of the not being biased wiki rules.

    and to top it off.. they also put removal of something I'd done under the reason "vandalism". (as I said Im sure they are trying to discourage anyone new from posting there so hence its like instant attack. What is going on at the CFS page I havent seen happening on other wiki pages and my posts have been well accepted).

    If anyone needs advice on how to post on the wiki or do things there feel free to pm me (Im still thou are learning myself, if it wasnt for others explaining it very easy to me, I still wouldnt be able to post.
    All those directions at wiki our illness prevents us from being able to get our head around them all and it was impossible before for me to post, without someone explaining it to me at times step by step.

    I suggest to try posting on another wiki page first to get a feel for it so dont get as discouraged before anyone tries to post on the CFS wiki page. . Also note.. wiki does discourage those who have medical issues not to post on them (due to possible biased). So take care to stay within the rules when posting and to unbiasedly post.
    ..

    The first important wiki tips for posting on wikipedia articles.

    All said needs to be referenced its <ref> then the reference then </ref> at the end of that. This will put a reference number by what you've said and automatically also put the reference at bottom of the page for you.

    When posting there, make sure you start all your paragraphs on the far left of the screen other the format comes out strange (in one long line in a box). That is the big mistake I was making when I first started posting. So no gaps before starting your post lines.
    ...

    If your post gets removed by someone for no good reason, take your case into the discussion section of the page put it to general consensus there, if consensus or not a rule breach, it can be put back. (being quite a newie there myself, Im having trouble knowing when exactly when the general consensus can be said to have been reached).

    If you go to the "view history" part of the page, whatever was removed you can press the links on the page to find it and see what someone used as the reason why something was removed (all things removed SHOULD show in the "view history" section).
     
    justinreilly likes this.
  10. taniaaust1

    taniaaust1 Senior Member

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    You need to support whatever you say using accepted references.. and will need references which outdo either in number or a better source to whatever they have there, if posting something which is opposing what is already there.
    ...

    I tried to test the waters (as i said..im sure the ones controlling things there are biased) there to get added treatments the other day other then the GET and CBT they have there and explained. I used the CDC treatment page as a reference to justify putting in a new treatment. I then tried to explain it and the whole thing was removed. (I dont know if they breeched wiki rules or not by removing the whole thing rather then just removing the unreferanced parts of what I wrote).
    ......

    update. for anyone interested in how things at wiki work. I just had communications with someone who is nice towards new posters to that page and he/she explained to me more why my post was removed. My post to the other started off with what I'd originally put on the wiki (I'd placed the following in the treatment section where GET and CBT are the only two treatments described there in any kind of detail).


    "Does that really need more references? Is it reasonable the whole removal of everything? Please share if Im really doing anything wrong here.

    thanks (sorry for the long post, I have Aspergers so tend to do long posts. strangely that reference on that page doesnt work after cut and paste to your message board and I cant figure out why.. its to http://www.cdc.gov/cfs/general/treatment/index.html --Taniaaust1 (talk) 02:30, 8 December 2011 (UTC)"

    "Hi Taniaaust1. Every statement in a regular Wikipedia article should be supported by a reliable source (see WP:RS) and be worded to reflect the content of that source (see WP:NPOV). For example, the CDC article you used as a reference does mention professional counselling, but it does not describe it in detail as you have done, neither does it state that professional counselling is "helpful", only that it is "available".

    I'm sure there are sources for all your statements, but if none existed for your commentary on professional counselling, Wikipedia would regard it as "original research". WP:OR suggests that obvious facts can be added without sources but if these are challenged then the burden is on the editor who wants the text in question to remain.

    Also, the CDC article does describe some of the consequences of illness so you may be OK there if it is close enough to what the CDC says. If you wish to keep the other statements, find additional sources to cover them, and such sources (usually) should meet the WP:MEDRS guideline if covering statements about specific medical issues.

    The MEDRS guideline and the NPOV policy are probably the most important to understand, otherwise you're going to get easily trampled on by regular Wikipedians who take issue with your edits.
    However, note that MEDRS is not the be all and end all of medical content as some people may have you think, it is a guideline which recommends summarising the scientific consensus, making readers aware of any uncertainty or controversy, and prefers high quality secondary sources where possible eg a review article in the literature. Whereas NPOV is a mandatory policy which states we must fairly represent all "significant" viewpoints in proportion to their "weight", and if MEDRS conflicts with this policy then NPOV takes preference. Also, MEDRS doesn't apply to non-medical issues like controversies and politics surrounding ME and CFS.

    As for the actions of other editors in general, sometimes people do remove content without adequate explanation or reason, but this time there was some grounds for removal, although yes it could have been done more constructively by rewording the correct parts. The rules at Wikipedia can be compared to a giant labyrinth with pitfalls and moving walls. I've been here part-time on and off for about 5 years and I only have a general gist of them, there is too much for me to understand in detail unless a specific situation calls for it. To make matters worse, there is room for interpretation so editors often end up arguing over them. "
    .......

    umm getting my head around all that MEDRS stuff and NPOV stuff rules isnt going to be easy for me. I think Im just going to have to keep learning by trial and error and keep adding extra references to things till no one there can fault it so it then has to be accepted.
     
    wdb likes this.
  11. taniaaust1

    taniaaust1 Senior Member

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    Alex i cant see why new research shouldnt be on that wiki page. Cause someone tried to pull me up on something elsewhere, I researched the wiki source info rules. It said that there is exception to the normal wiki rules, which say to always try to use secondary sources. In the case of new research "primary" sources may be used.
     
  12. Carrigon

    Carrigon Senior Member

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    I fought to change that thing a few years back and got nowhere. Didn't matter what research I sent to the one that was in charge of that area, he/she/it told me that we have a mental illness and then locked the wiki so I couldn't edit it. And it didn't matter that it wasn't just me trying to get it changed. I remember a bunch of other patients trying at the time, too. Whoever is in charge of that section will never let it be changed.
     
  13. taniaaust1

    taniaaust1 Senior Member

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    I know it is a ton better then what it was when I originally saw it years and years back, so some changes were made since then but then it had a very strong psychological push to its readings (well since I originally started watching it).

    Maybe if people who tried before but was then locked due the biased there.. all tried again.. just maybe it could go into a non biased article. I do suspect thou that those who stopped things in the past, may still be working on it now. (it would be interesting to know who got it locked in the past).
     
  14. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    That's weird because I read in the guidelines that it's ok to even hire people to change stuff on wikipedia, which surprised me.
     
  15. taniaaust1

    taniaaust1 Senior Member

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    Something new come to my attention today with that Chronic fatigue syndrome article. The article itself has a B rating. So I just looked at what a B rated article means and found this definition of it

    "The article is mostly complete and without major issues, but requires some further work to reach good article standards".


    WHAT!!!.. how in earth can it have a B rating .. "mostly complete and without major issues". The rating itself is deceptive as its so making it look like a overall not to bad article. (Ive no idea how those ratings are formed, if someone knows please share). In who's views is this article mostly complete (I bet I can work that one out).
    ....

    edit. I just found out by sheer luck how the rating the articles happens.

    "Any member of WikiProject Medicine is free to addor changethe rating of an article, but please follow the guidelines."

    So i looked up if anyone can be a member of wiki project medicine
    http://en.wikipedia.org/wiki/Wikipedia:WikiProject_Medicine/Participants and that says .
    "Medical qualification is not necessary but it might be helpful when someone else is looking for help on a specific matter."

    Most on the list there are doctors and medical people but there are some who dont have any qualifications.
    ........
    http://en.wikipedia.org/wiki/Wikipedia:WikiProject_Medicine/Assessment#Importance_scale
    Page also talks about the A, B, C etc ratings and their meanings etc

    "What if I don't agree with a rating?
    Relist it as a request or contact the project.

    Aren't the ratings subjective?
    Yes, they are (see, in particular, the disclaimers on the importance scale), but it's the best system we've been able to devise; if you have a better idea, please don't hesitate to let us know!
    "

    The project talk page if anyone wants to contact the project to complain on the CFS wiki page being rated as a B is at http://en.wikipedia.org/wiki/Wikipedia_talk:WikiProject_Medicine
     
  16. taniaaust1

    taniaaust1 Senior Member

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    If i came across what I read again. I'll provide the link to it. As per everything at wiki when one is trying to learn the rules there, I wouldnt have a clue now where I read it there.
     
  17. biophile

    biophile Places I'd rather be.

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    I wondered what happened to you SilverbladeTE, I was actually starting to miss your liberal use of words like "scum" and "scumbag"!
     
  18. LaurelW

    LaurelW Senior Member

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    I second that. Kinda dull around here without you!
     
  19. Carrigon

    Carrigon Senior Member

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    The really sad thing is, that's the first place alot of people think to look for info on the net. They don't realize that alot of what's up there for all different subjects was compiled by anyone and everyone, meaning, many times the info is inaccurate. But it's the first place people think to look.

    I don't remember if I ever got the name of who locked it up before. Just that I think it was a female and she was nasty to me. She told me it's a mental illness and that they have all the info they need on it and she locked it up. Didn't matter what I sent her with real medical research facts. She refused to listen at all. And many people at the time sent her stuff, too. She didn't care.
     
  20. Advocate

    Advocate Senior Member

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    Originally Posted by taniaaust1
    I noticed you were there.

    Take care as it is in wiki rules that one isnt allowed to gather a group up to try to change things, they can ban your account for it. So as much as its all biased there and needs to be changed. We cant work on it as a group. But yeah the more who post there, the less biased the info will be as it is consensus.


    I'd love to hear more about this. If I headed a disability insurance company I'd certainly hire people to try to control the wikipedia entry.
     

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