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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. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Molly, I strongly urge you, as a mental health professional, to speak out against GET and the evil version of CBT that Wessely and co. use. We desperately need medical and mental health professionals to challenge the lies. Do you know anyone else with such expertise about ME and psychology and could you possibly look into petitioning the relevant psychiatric and psychological orgs (both called "APA" I believe)? For example, DSM 5 is a huge issue we need to continue to mobilize for. If you can't now, pls keep it in mind if you can in the future. Sorry if this is presumptuous; don't mean to foist work on you : )
    Wildcat likes this.
  2. Tristen

    Tristen Senior Member

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    I wholeheartedly second the motion.
    justinreilly and Wildcat like this.
  3. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    Yeah, you need to watch out for those very sickly people who are hardly able to function (10-25% bedbound) most of the time and who probably live below poverty,, especially when you include how much they need to pay out of pocket for their meds and supplements and treatments not covered my main stream medicine and insurance. I think the idea that you would condemn a whole group of patients just because of a few outspoken patients is absurd and disgusting on its face, and oh yeah, laughable!

    GG

    PS Just another lousy excuse for people to not do their jobs and try to blame the victims (for their own inadequacies)!
    Wildcat likes this.
  4. taniaaust1

    taniaaust1 Senior Member

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    Thank you greatly for your post. The smoking group thing is a kind of example of the what Im refering too.

    People coming into groups.. and MAKING OUT they have whatever the group has... but actually there with the intent to disrupt a group in some way.

    Some things ive been reading lately are so illogical to me and could stir up a lot of trouble that i wonder IF the people are ones who really have ME/CFS or whatever one wants to call their disease .

    I myself have had no trouble with anyone in recent times (things always said in a way in which arent actually a rule breech so there is nothing to report) .. but just worry if we "may" be being infiltrated and our community/communities made to look bad.

    Maybe insurance companies could tactics like this? (I personally wouldnt put it past those, to what degrees will some insurance companies can go to to try not to payout claims).

    Maybe some Weasely school believers which have something to loose if we stop being seen as psych patients could pose as irrational patients themselves to cause shit? or whatever.. maybe there are groups out there who just choose other groups to have thier fun with and try to cause trouble and split communities?

    How would we know if a group started to infiltrated us and was here with the aim to cause trouble by making us all look crazier? (if they were smart they would do it in a way to not obviously breech any rules and to not get kicked from site).

    Thanks all for the posts..
  5. Molly

    Molly

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    Justinreilly, you must have missed my statement: "I may be most verbal to extinguish the notion of CBT & GET interventions as helpful".

    How do you know that I have not been working toward getting distance between ME/cfs and Wesselyian propaganda? I have also been busy fighting a discrimination case of my own. CBT/GET is the delusion of the Psychologists & Psychiatrist. They are not going to stop trying to over-medicate based on their beliefs any less than a PCP will do with their silly palliative approach symptom by symptom. Unfortunately, there are professionals who will push for a philosophical ideology rather than provide care for the true need of a patient. Psychiatry has a very strong lobby group and with "Neruo" attached to any malady, if it is in the brain, Psychiatry is going to take ownership? They can turn any physical illness into a mental illness. as far as I know Wessly does not own the DSM! but the training of a new generation of Psychiatrists needs to back away from his self-righteous foolishness. It is abuse of victims of the illness to minimize and ridicule their demise. Just as taking 25 years is to find an adequate diagnostic tool, or medical intervention to give us the freedom of a true quality of life!.
  6. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    A recent thread on the difference between ME versus cfs that i was taking part in i think wasnt helping anyone, just dividing us and causing more stress then we needed. A few days ago i deleted these as i dont think they were of any value other then to stress forum members, everyone has their on opinions on this and it just brought some of us against each other which i didint think was right. When these types of topics come up all they do is cause dramas we dont need, in my opinion.

    cheers!!!
  7. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    I just mentioned the me versus cfs thread as it can causes some to get upset and this forum is abit sensitive of late and at the moment its hard to debate things without upsetting the apple cart. I wasnt directing this at anyone, maybe its the timing at moment i dont think is right at the moment and sometimes threads can go off in a different direction to what was intended as well. I think we all have to have some empathy for each other and try and help each other out. I think there are other threads that have people pick a particular view and when sides are picked its seems to get hotly debated and tempers can be on edge. Does that make sense??
  8. Sean

    Sean Senior Member

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    A serious possibility, unfortunately.
  9. Desdinova

    Desdinova Senior Member

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    Hi Molly my comments in my original post aren't directed to all Those working in the Mental Health Field.

    It's Directed towards the Leaders or Generals as I like to call them. Weasel and Company are prime examples. It's them or rather (in most cases) a few toadies that work on their behalf that I believe spy on (view but don't post). And some of those I believe go further by strategically posting to stir the pot. I don't believe in any way and form that the average medical or mental health practitioner is trolling the web taking notes, posting and IM'ing inflammatory remarks to create discord amongst the community. Sadly I believe that we largely do that to ourselves.
  10. snowathlete

    snowathlete

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    I think thats a really good point. There are certainly plenty of negative topics at the moment. I do think it is right to debate these problems because they clearly do exist, but we should probably balance that will topics that are more likely to generate a supportive outcome for our group.
  11. snowathlete

    snowathlete

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    Moderator: Post deleted. This discussion of other forum members' moderated posts was unhelpful and off-topic to this thread.
    Enid likes this.
  12. Battery Muncher

    Battery Muncher Senior Member

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    Hmmmm well I'm new here, I'm not a regular, and I don't know the backstory to this.

    But I'm not sure we should really be reporting people if it isn't necessary. I think people should be allowed to have their say where possible.... obviously trolling should not be allowed, and nor should unnecessary aggression/personal attacks - there are limits.

    Still, I don't think we should necessarily report a post because it is 'troublesome' etc..... if someone backs up their opinions with reason and evidence, then it is a legitimate contribution to the debate....
  13. snowathlete

    snowathlete

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    Moderator: Post deleted. This discussion of other forum members' moderated posts was unhelpful and off-topic to this thread.
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  14. maryb

    maryb iherb code TAK122

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    Moderator: Post deleted. This discussion of other forum members' moderated posts was unhelpful and off-topic to this thread.
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  15. Battery Muncher

    Battery Muncher Senior Member

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    Moderator: Post deleted. This discussion of other forum members' moderated posts was unhelpful and off-topic to this thread.
    Wildcat likes this.
  16. snowathlete

    snowathlete

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    Moderator: Post deleted. This discussion of other forum members' moderated posts was unhelpful and off-topic to this thread.
    Enid likes this.
  17. Tristen

    Tristen Senior Member

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    I interact with several different health communities, two of which are larger than ours on me/cfs. My energy spent thinking about and discussing internet trolls is like 0.0001% of my time in all these arena's together. 99% of my time in these forums, is networking a positive give and take of ideas and possible solutions. I also value peace of mind and using my limited energy wisely and not allowing stressful situations free rent in my head. At least not for long. Speaking only for myself, I see no good reason to get stressed about this topic. I thought it was more a discovery, rather than a bashing session anyhow. Bottom line, the topic is not worthy of excessive stress.

    Ok, back on topic. What I've witnessed is the same ~4-5 individuals frequenting multiple sites publicly condemning several of our committed doctors and researchers. They had become fairly effective influencing people with the vitriol. I know their behavior was detrimental to our community because those affected by it, have told me so (also, see Corts interview with Dr P). I feel it would be good if the negative influence of these few individuals was minimized, that is if we want to maximize our chances of retaining and recruiting good researchers and doctors to the field. That's all I have to say on that.

    Not sure how you got that I was "condemning a whole group of patients" (for the behavior of only a few), because it's not stated, implied, or even considered in thought. Actually, I would prefer to not know where you got that idea. Peace of mind thing again.

    Peace, out.
  18. mellster

    mellster Marco

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    I don't get the impression of any conspiracy, quite the opposite, research seems to have picked up recently and we can use all the diverse opinions on causes/treatments we can get - ok, maybe except for pure psycho-babble ;)
  19. barbc56

    barbc56 Senior Member

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    We have to be careful about calling people trolls, when it may just be people with another opinion. Sometimes, it's a fine line between the two. I think we all have been guilty of that at one time or another. We are only human.

    As far as covert government conspiracies, I don't think it's likely. The government would be in meetings for ten years before coming up with a plan. Such are the nature of bureaucracies.

    The world is not in black and white. There's a lot of shades of gray between the two. Then add in the colors and it gets even more complicated.

    I like what someone said.

    Peace out. :>)
    Wildcat and wdb like this.
  20. markmc20001

    markmc20001 Guest

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    I believe there are numerous posters on the forums who are not working in the patient communities best interest. I think they post daily and probably even on this thread.

    I don't know if they are trying to make the patient community look bad necessarily, and often act just like anybody else! :eek: I think they are mainly confusing patients/researchers when a particular topic comes up that conflicts with their idea of what the "official message" should be.

    They are probably working for the MRC, CAA, CDC, or Big Pharma, or the insurance companies to support that official message.

    I think the "chronic fatigue" message is one they have carefully crafted for about 20+years (starting in the Oslers web days) with Reeves, Wesseley, and the piles of research making it seem as though CFS is a psychiatric disease mainly and still has no known biological cause to do legitimate research on. :rolleyes:

    This allows them to do many things, one of which is to avoid chronic disability payments.

    I can't see why, after 20 years they would want to change their minds all of a sudden, and "undo" everything they worked so hard to create. Therefore, it is better to have a a number of forum posters present to maintain that carefully crafted message.

    If they really wanted to do well, they would come out of the closet and give a $10 million dollar grant to somebody like Rich Van K and let him organize a real research project to help us immediately. Instead they have multi million dollar remodels in the CDC complete with saunas, and TV studios....?

    :eek:

    It's called plausible deniability (The same old crap). Maybe a real disease, but mostly psychological fixed with CBT or GET, No good testing, no good treatments, no good vitamins, no good drugs. No good advocacy organizations, no good research organizations to fund,(wait they just destroyed the WPI!) On and On and On... Worse yet, we are going to take away your supplements with codex alimentarius!
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