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

justinreilly

Senior Member
Messages
2,498
Location
NYC (& RI)
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 : )
 

Tristen

Senior Member
Messages
638
Location
Northern Ca. USA
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 : )

I wholeheartedly second the motion.
 

*GG*

senior member
Messages
6,389
Location
Concord, NH
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.

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)!
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
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.

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..
 
Messages
22
Location
Hagerstown, MD
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 : )

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!.
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,089
Location
australia (brisbane)
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!!!
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,089
Location
australia (brisbane)
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??
 

Sean

Senior Member
Messages
7,378
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.
A serious possibility, unfortunately.
 

Desdinova

Senior Member
Messages
276
Location
USA
Hi Molly my comments in my original post aren't directed to all Those working in the Mental Health Field.

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.

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.
 

snowathlete

Senior Member
Messages
5,374
Location
UK
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??

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.
 

snowathlete

Senior Member
Messages
5,374
Location
UK
Moderator: Post deleted. This discussion of other forum members' moderated posts was unhelpful and off-topic to this thread.
 

Battery Muncher

Senior Member
Messages
620
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....
 

snowathlete

Senior Member
Messages
5,374
Location
UK
Moderator: Post deleted. This discussion of other forum members' moderated posts was unhelpful and off-topic to this thread.
 

Tristen

Senior Member
Messages
638
Location
Northern Ca. USA
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)!

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.
 

barbc56

Senior Member
Messages
3,657
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. :>)
 

markmc20001

Guest
Messages
877
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 really 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, 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

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!