1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
No Longer Naive in the Ways of The Beast
After having lived for years with ME/CFS, Jody Smith learned there's more to this beast of an illness than she realized, and that what might help one person may not help others ...
Discuss the article on the Forums.

Is there some crazy conspiratory going on to make ME/CFSers look bad?

Discussion in 'General ME/CFS News' started by taniaaust1, Nov 11, 2011.

  1. taniaaust1

    taniaaust1 Senior Member

    Messages:
    7,461
    Likes:
    4,213
    Sth Australia
    Ive noticed lately there is a heap of completely illogical behaviour of late going on which seems to be trying to encourage others to do the same. (with some thou I dont agree with what is going on in their thoughts, I can see how they've come to their reasoning so this post isnt about them but there are some others, its going far beyond this and just arent normal behavioural responses).

    Maybe I myself are crazy for even thinking this but Im seeing so much irrational behaviour among those with ME/CFS of late (by this I mean among our forums), that Ive started to wonder if there is some conspiratory going on which wants to make us appear crazy?

    Is it possible that there are people out there who actually want us to look bad? Who may infiltrate places and pose as one of us to do that and try to stir up trouble for not just this community but the ME/CFS community as a whole?

    Yeah now Im sounding illogical myself
  2. Esther12

    Esther12 Senior Member

    Messages:
    5,098
    Likes:
    4,895
    Me/CFS is a really difficult and confusing condition to live with. Particularly in places like the UK, when the prejudices that surround the condition are particularly harmful, I'm not surprised that this has led to some crazy seeming behaviour. Personally, I don't think that people are tying to make us look bad... they're just caught up in their own anger and pain.

    Also, I expect that I've done some things which have made CFS patients look bad, and you probably have too! When there are already so many negative assumptions about, it's difficult not to.

    CFS patients are just as crazy as everyone else, and living in more difficult circumstances. There's all sorts of madness on the internet, and I'm not at all surprised that some of it comes from CFS patients. It does do a lot to harm that way that CFS patients are thought of... but that's largely because of the negative assumptions which already surround the condition. There are lots of crazy white people on the internet - but we realise that is not an acceptable reason to think poorly of white people as a whole.

    Also - perhaps because there's so much uncertainty around CFS, and we can feel rather downtrodden, a culture of permissiveness has grown up, in which we feel less willing to self-police than we otherwise would. This can allow poor arguments and inaccurate beliefs to go unchallenged and uncorrected. A similar thing occurred amongst homosexual and black sub-cultures, particularly when they faced greater oppression. I know that, if a patient is feeling hopeful about improving because of homeopathy, I feel like an arse for pointing out that it's just sugar pills.

    edit- feeling a bit grimey today - and I'm not sure how cogent I'm being. I've been thinking about whether 'we' (patients) should be trying to be more active in criticising/correcting other patients. It's hard to prioritise when feeling so exhausted though! Especially as it's people in positions of power and authority with unreasonable views about CFS that have a much more direct impact upon our lives.
    taniaaust1 and max like this.
  3. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

    Messages:
    2,490
    Likes:
    1,167
    NYC (& RI)
    +1

    ___________________
  4. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

    Messages:
    2,490
    Likes:
    1,167
    NYC (& RI)
    There is an interesting thread on the other forum about how NIH does studies on how to influence on-line patient forums. I recommend people check it out.

    http://www.mecfsforums.com/index.php/topic,10413.0.html

    excerpt from first post:

    taniaaust1 likes this.
  5. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

    Messages:
    2,490
    Likes:
    1,167
    NYC (& RI)
    Tania, can you elaborate on the crazy behavior?
  6. Desdinova

    Desdinova Senior Member

    Messages:
    272
    Likes:
    124
    USA
    The fact that someone who even questions the possibility of a conspiracy or even a conspiracy theory is viewed as being wacko and crazy can make that a conundrum. As for possibilities almost anything is possible, it just depends on the right resources and conditions coming together to make them happen. The chance of those resources being available and those conditions being available and or occurring and to what degree is what moves it from an improbability to a probability.

    That aside I'm sure that there are at least one or two forum members at numerous health issue related forum communities on the net who belong to, are affiliated with or connected too directly or indirectly Government Health Organizations and/or those who work in the Mental Health Field. And that they do not announce their association or connection to them. And I speculate that most just observe but that a few actively interact with others. I also speculate that some of the ones that actively interact with others in the various online forum communities do so with disingenuous intent.
  7. leela

    leela Slow But Hopeful

    Messages:
    2,368
    Likes:
    2,695
    Couchland, USA
    I've noticed a pattern to the (paid?) trollish behaviour. Once this pattern makes itself evident, to me the best option is to simply not engage them, to ignore them completely no matter what crazy mean salvos they launch. Simply flagging it for moderation if it gets out of hand is also good.

    Then those posters are welcome to look as nutso as they care to, while the greater population of the forum can keep its focus on engaging in reasonable discussion, even when that discussion is one of opposing views or heated topics.
  8. barbc56

    barbc56 Senior Member

    Messages:
    1,251
    Likes:
    634
    Where can I sign up? I need the money!!!! :>)

    ETA This IS a joke. Just trying to lighten things up.
    snowathlete likes this.
  9. Tristen

    Tristen Senior Member

    Messages:
    611
    Likes:
    418
    Northern Ca. USA
    It's not your imagination. There has been trollish like behavior for well over a year now on several of the me/cfs sites/forums. Have you read Corts interview with Dr P where he points out how the aggressive behavior is detrimental to our community? He is actually only touching lightly on the magnitude of the problem. He is not talking about the well known and supported aggressive confrontation of misinformation from W and his ilk, he is talking about the vitriol that has been unjustifiably directed at our committed doctors and researchers which as he says, is detrimental to our community.

    Not saying I agree necessarily, but there are those who view some of the more negative actions as a deliberate attempt at divide and conquer by a small group of people claiming to be me/cfs patients. Conspiracy or not, the behavior has already made a negative impact. Our desperation and anger (due to decades of brutal illness and being left for dead by a corrupt political system) can be our greatest strength, or it can be our greatest weakness easily manipulated by those who may not have our best interests at heart. The use of trolls to disrupt the strength of a community, apparently is not uncommon practice these days. Obviously I don't know for sure this is happening here, I'm just saying, your not alone with these kinds of concerns.

    I tend to agree with a position like Leela's. Just don't respond to the vitriol because it only inflames the problem. But I also expected to see the behavior fade away by now. The fact that it has not may be an indication of the need for intervention.
    snowathlete likes this.
  10. snowathlete

    snowathlete

    Messages:
    1,994
    Likes:
    1,970
    UK
    Possible motives i can think of in addition to the 'government organization' theory, which sounds far fetched, but then since ive had ME/CFS ive learnt that my government (UK) dont give a damn about doing what is right, so i wouldnt rule it out entirely.
    Anyway, the other motive might be benefit frauds who dont actually have the illness, who obviously have something to lose from a test/treatment being devised. It's an uncomfortable fact that an illness such as ours, with no acredited blood test, will have attracted alot of these types. How many? No idea, but maybe 10% of people with ME/CFS know that they dont really have it?

    Another motive might be an organization who makes a living out of us being ill - perhaps one 'treatment' or another. I wouldnt like to speculate which.

    At any rate, if it isnt a random occurance, then there has to be a motive. Uncovering it would be tricky though i would think.
    taniaaust1 likes this.
  11. LBS

    LBS Senior Member

    Messages:
    115
    Likes:
    21
    Sacramento, CA
    I'm new here, but I'm not new to internet dynamics, by any stretch. There are trolls all over the internet, some of them just like the attention they get from disruptive behavior. I'm sure there are dynamics in some groups that make it attractive for special interests to take an active interest in creating disharmony, as well. I was on a USENET group for smoking cessation for a long time, and there was a subgroup there who were convinced that the trolls were operatives of the big tobacco companies. I didn't think, at the time, that USENET was influential enough for the tobacco companies to waste their resources, but who knows?

    I haven't been around this group long enough to have a theory about what's apparently happening here, but one thing I do know that that a few trolls can create a heap of distrust, pitting long-timers against toward newcomers, and that's often used to feed into the disruptive dynamic even further. The group as a whole should be cautious about that, IMO.
  12. snowathlete

    snowathlete

    Messages:
    1,994
    Likes:
    1,970
    UK
    I did a search on the internet to see if i could find any activist ME/CFS organizations that others have had trouble with and I came across a group that seem to have a track record of harrasment in regards to ME/CFS views. I dont know anything about them, only what I just found doing a search on Google, but they are called the OneClickGroup?

    I read that there leader is currently in jail for harrasment. Obviously i cant substantiate what is written by other people on other websites, maybe the group is fine, I've never heard of them before. It might be worth looking into though, as if it is a dodgy group, then maybe some people who are associated with it, might be members on here too?

    Moderator Note: I'm sure snowathlete didn't intend any offence here, and was just raising this matter as a question, so this note is not a warning or reprimand to snowathlete, but there have been a string of similar claims on this subject in recent weeks and months on this forum, which have often sparked arguments.

    Members should be cautious to be strictly accurate when posting allegations or repeating insinuations about these matters (ie. about other ME/CFS activists), because some of the misinformation posted here recently has been quite offensive, possibly borderline libelous, and damaging to community relations. Vague accusations of 'harrassment' and being 'dodgy', when not backed up by evidence, and aimed at a particular group (however vaguely defined) are liable to provoke an angry response from people involved in those groups. Posters may not be aware that there are members of this forum who may take these allegations as an attack on them personally. The risk when posting unsubstantiated comments like these is that such comments may provoke an angry response - and it then becomes something of an open question as to who is harrassing whom...

    I've also seen some vague allegations about "UK activists" where sloppy language appeared to lump all UK patients in together, and several UK members have felt unfairly targeted by such posts. The repetition of rumours can do considerable of harm to the public image of the wider ME/CFS community, particularly in the UK, and it's a very sensitive issue in the UK, which certain psychologists appear eager to exploit regularly in the press.

    In this case, the suggestion that "[the oneclick leader] is currently in jail for harrassment" is quite untrue, and a misinformed and perhaps malicious rumour that is best not repeated. Although snowathlete did caution that this allegation is unsubstantiated, it's understandable that when a false allegation is repeated frequently over a period of years, it gets tiresome for those involved to have to keep refuting it. So it's important in such matters to try to establish the truth or otherwise of an allegation, and provide some evidence or references, before repeating what may merely be an offensive or upsetting smear. I think it would be helpful if members could be cautious about posting this kind of allegation in future.
    Tristen likes this.
  13. Wildcat

    Wildcat Senior Member

    Messages:
    584
    Likes:
    449
    Hi Snowathlete..... No One is in jail for harassment.

    I do not have any connection with the One Click Group personally, but I am concerned to see speculation escalated in this way, especially when it comes to wild statements about Non-Existent criminal offenses and Non-Existent prison sentences.



    Not every one agreed with One Clicks approach to ME activism over the years; however, disagreeing with activism approaches does NOT mean that the people disagreed with had committed criminal offenses.


    If you are prepared to commit much more time to researching this matter more thoroughly, you will no doubt discover that this matter is not as black and white as you have suggested from a preliminary Google search.

    I think you will see that One Click dont engage in ME politics these days, but do report on other health/civil rights related matters:
    http://www.theoneclickgroup.co.uk/


    By the way, if everyone who was a member of the One Click Group at some time or another was put 'under suspicion of Trolling then half the UK ME community would be suspected of being Trolls!!
    Angela Kennedy, justinreilly and max like this.
  14. max

    max *****

    Messages:
    192
    Likes:
    31
    Divide and conquer anyone?

    Actually, I believe we need all the help we can get. We are up against major opposition to finding out what ME is, and just as importantly, finding out what it is not.


    I can't seem to shake the 'anger' - maybe soon I will - I'm not ready at the present moment in time.
  15. Wildcat

    Wildcat Senior Member

    Messages:
    584
    Likes:
    449
    @ Moderators: I do think that moderator attention needs to be directed to posts on this forum that speculate, or suggest, or accuse, without evidence, about supposed (Non Existent) criminal offenses, or (in this instance) Non Existent prison sentences.


    This is not the first time that wild and unsubstantiated speculations/accusations about (Non Existent) criminal offenses by UK ME community citizens, have been posted on this forum.
  16. leela

    leela Slow But Hopeful

    Messages:
    2,368
    Likes:
    2,695
    Couchland, USA
    Wildcat, if you re-read snowathlete's post, there was a large and polite disclaimer about not knowing anything about the group or being able to substantiate the info found thru a quick google search.

    i didn't read that post as incitatory at all, just inquisitory, and I do not believe it merits moderator attention.
    beaker, Tristen and snowathlete like this.
  17. snowathlete

    snowathlete

    Messages:
    1,994
    Likes:
    1,970
    UK
    I'm not going to be goaded into a flame war because of your moderator comment. What i said was on topic and as I said In my post, I dont know anything about the group, just what I read on another site. I also pointed out that I could not substantiate the claims these other people made, and that the group may in fact be fine. Furthermore i did not post a link to the site i read, because i am aware that there may be other sites that show a different side to the story. so I think I was very neutral about it. I still think its worth considering if a group (not necesarily this one) is responsible for the problems that the OP has raised though.

    Thank you for sharing your opinion on the One Click Group, thats helpful. Though of course, the link you provided to their own site, is obviously only going to tell their side of things, and it might be better if people did their own research and reached their own conclusions. As i said already, that is why i did not provide a link to the site i found with a different view. It will be interesting to see if anyone else has an opinion on the group.
  18. Wildcat

    Wildcat Senior Member

    Messages:
    584
    Likes:
    449
    Leela Wrote: "@wildcat, if you re-read snowathlete's post, there was a large and polite disclaimer about not knowing anything about the group or being able to substantiate the info found thru a quick google search.
    i didn't read that post as incitatory at all, just inquisitory, and I do not believe it merits moderator attention."

    ~~~~~~~~~~~~~~~~~~~



    Precisely!!! snowathlete IS responsible because they have repeated 'what they read on the Internet' Without any evidence OR references, yet believed that they could claim that someone was actually In Prison (which is TOTAL TOSH) just by stating 'I read it on the Internet - it may not be true - but I am going to spread it around anyway'.


    Such a tactic that snowathlete used enables all kinds of wild and accusatory statements to be made (as Snowathlete did), yet protects the Poster from responsibility for their statements.


    It IS encumbent on the Poster to provide Referenced Evidence to support such serious claims/accusations of Criminal Offenses or Prison Sentences!


    It is NOT acceptable to merely state that it "has been read on the Internet" and that therefore the Poster has NO Responsibility for spreading Tittle Tattle and Gossip about such very serious Legal Matters as Criminal Offenses and NON Existent Prison Sentences about Named (or easily identifed) Individuals.



    And I am not in the least surprised that there was an Immediate and vocal defense of the person who made the Very Serious and Unsubstantiated Accusations against UK citizens, based on 'what they read on the Internet'. Such knee-jerk defenses of the indefensible is increasingly common.
    mon me likes this.
  19. Wildcat

    Wildcat Senior Member

    Messages:
    584
    Likes:
    449
    The post that speculated about about One Click (which does not much discuss ME matters on its site now) has effectively operated as a distraction from the issue of possible Trolls operating on Phoenix and other Forums Right Here and Now.
  20. Molly

    Molly

    Messages:
    20
    Likes:
    14
    Hagerstown, MD
    I am confused by the term "trollish behaviors"? Do you mean one how looks at the chats but then does not contribute? Or something else? Also, how does one express their disdain for the multitude of Doctors, and Researchers who are persistent to sabotage the earnest work of the truly committed ME/cfs Physicians and Researchers without mixing the two separate group of practitioners?

    In response to desdinova's comment, I happen to be a licensed mental health professional, but the illness has dramatically limited my ability to work. I still have knowledge, and may at times share that wisdom without being a counselor. Very similar to how debilitated scientists and nurses offer incite from their professional background. I may be most verbal to extinguish the notion of CBT & GET interventions as helpful, but I could not discredit the benefit of maintaining needed therapy support to manage issues of despair (I don't mean depressed), grief from loss of functioning & social isolation. I have worked for the federal government, state and local levels as well as private practice and mental health hospitals. However, I am not associated with any organization other than the growing numbers of debilitated people who have lost hope in expecting much advancement when all the money goes to to studies to contradict the good work people are doing.

    I am my only client at this time. I have gone to my physician with my symptoms clearly spelled out, just as I would prepare my former clients to work with their physicians. Often I am met with the coment, "are you sure your not "OCD"? No, I am bored and I want to make this clearly easy for her....I want my health back; I have too much time on my hands to just sit idle! My reality is misinterpreted by her. Her life was much easier when I worked 2 jobs, she never saw me! It would be easy for the natural symptoms of our illness such as increased anxiety, PTSD, panic attacks and others to be interpreted as irrational thinking and used for the evil, or as you suggest of a "conspiracy theory", to be used to exploit our demise, discredit our knowledge or to use against us when we advocate for ourselves.

    How does a moderator sort all this behavior out to know what is good grief and the work of a leech?

See more popular forum discussions.

Share This Page