A couple of months ago I started taking an interest in skepticism and the skeptic movement, reading books and blogs, watching videos, and listening to podcasts. I would like to share something I heard on one of those podcasts.
At The Amaz!ng Meeting 8, July 2010 in Las Vegas, Carol Tavris, a social psychologist, was interviewed by Joanne Benhamu, a reporter for the Skeptic Zone podcast, on the topic of cognitive dissonance. The interview can be found on the “The Skeptic Zone #97 -27.August.2010″ podcast and is available on iTunes, Zune and on The Skeptic Zone website. If you don’t want to listen to the entire podcast, fast forward to minute 28.
The interview is, like I mentioned before, on cognitive dissonance and also discusses the use of anger in social movements. Examples given were feminism, civil rights, and skepticism, but to me Carol Tavris might as well have been talking about ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome). Below you will find a partial transcript from the interview:
In my book I talk about the uses of anger and the abuses of anger. In the case of great social movements for justice they all begin in anger: feminism, civil rights movement, black rights, … In your country, well in every country that has to deal with the rights of minorities that have been oppressed for centuries, those movements are born with anger and the realization that a massive injustice has been committed and with the determination to set it right in some way.
As many have observed about social movements, anger is necessary to ignite a social movement, but it isn’t what you want over the long haul. You want, and I quote a wonderful writer in that book who said “What you want is a little flare of anger, enough to keep you going, but not so it consumes you, makes you crazy.” Because in the next phase of any social movement for justice or change the next question is “What do we do to persuade the opposition? What are we going to do now to reach our goals?” About the equality, about an apology from the government, whatever it may be.
At some point ranting, rallying and marching into the streets isn’t effective. Anger has a time and a place, and then so does persuasion and other tactics
When you read a lot of blogs, forums, comments, Facebook status updates and tweets on the topic of ME/CFS you cannot help but notice that there is a lot of anger and outrage around. Does this mean that the ME/CFS movement, even after decades, is still in the start-up phase? Or does it mean that we are stuck in the start-up phase? That is of course an incomplete picture because patient organizations can develop at different rates, but still … What initiatives do you know of that use persuasion as a tactic? Should we move on or at least start planning the next phase?
I liked the interview and it’s my opinion that Carol Tavris might as well have been talking about the ME/CFS movement. Except for the marching into the streets thing; we never really got the hang of that. 
| I didn’t want to be a f***ing pop star. I wanted to be a protest singer. |
| Sinéad O’Connor |
{ 17 comments… read them below or add one }
The thing is, by definition of our problem, we don’t have the energy to get past the starting phase!
Hi David,
The internet offers enough tools to go to the next phase: social media, GoogleDocs, online collaboration tools, video conferencing, … most of them are free. There are no physical and no virtual boundaries to work together on a comprehensive dossier (down-to-earth, science based, not hype based) and make it available for free (document, website) and keep it updated. Make it multilayered: ME/CFS 101, then links to more indepth articles, and finally links to scientific articles. Make easy to understand press releases. Create alliances worldwide so that not every patient organization has to reinvent the wheel and that dossiers can just be translated and modified to suit regional needs. Daunting task for an individual or small organization, but not when you have millions of potential volunteers.
Actually you can apply the spoon theory here: will I use a spoon a day/week on an (inter)national ME/CFS organization or will I spend it in anger and on of the thousands of Facebook groups or pages? Anger is such a huge drain on energy, but it can ignite inspiration and creativity.
There are limits , one the academic knowledge (But what we can learn a little by example virtue of your letters ), and second, that sometimes too rational thinking suppress the emotions of patients to highly making them to go there own way. For the rest I love your examples here. I hope we will ever succeed
Thank you Monique.
Emotions are good, better to have anger than to give up or become passive.
But sometimes I wish that energy could be focused towards a common goal. I don’t see XMRV or MLV as a goal, it’s an interesting hypothesis, better biomedical research and funding is a goal. I sometimes have the impression that patients are betting all their money on XMRV/MLV; I don’t think that is wise, but I understand the emotion.
Yes, we hear you. i have been labeled as
the “Angry Advocate” for more than 20 years. i have learned to live with it. People who knew me for the first 30 years of my life rarely saw me angry. My father had a pretty vicious temper, and you only crossed him at your peril. But, i was a pretty happy go-lucky guy.
But we are VERY ill. and the government and the medical establishment has lied from day one. They lied to us, and they lied about us. we have exhaustion that is unknown and indescribable to anyone who has not suffered from it. And that is very awful to live with. But that is not what kills. I see people i used to know in my former life from a quarter of a century ago, living very full lives. some of them on TV and in the news.and i can barely roll over in bed most days. But, that doesn’t bother me. Life happens. i type, because i can do nothing else. Anger is like a flame. you need a certain amount of anger to cook a great meal, but if you have too much heat, you ruin the meal. i understand the point the writer is trying to make. But they have NO clue what it feels like to endure a Rodney King Style beating every day for Decades! it truly is torture. There is no other word for it, than torture. and until we get a fair name and decent definitions we are doomed . i am frankly surprised that some patient or father of a young patient who has had his or her life destroyed by these brutal condtiions hasn’t taken one of these clowns out. God knows, some of them deserve a really nasty final exit.. and when it happens…i will applaud the person brave enough to trade their life
for one of these attempted mass murderers. that is what they are. I know for a fact, that some top NIH and CDC officials KNOW that patients are gravely ill. Top researchers from around the world have told them, in front of me, that we are some of the sickest patients they have ever seen. and the top government officials just shrug like “what do you want me to do about it?” when they KNOW the truth, and they lie repeatedly to their superiors. they lie repeatedly to the public. they lie repeatedly to insurance companies, and Congressional leaders, they deserve NOTHING less than the full contempt of every sick patient extant.
I was raised by very strict Roman Catholics. There is a certain ring in Dante’s Inferno for Priests who abuse young children. And there are certainly rings of fire in Hell for government officials who allow people to be TORTURED, SHEER PHYSICAL PAIN LIKE HOLDING ONE’S HAND OVER A LIGHTED FIRE! the fires of hell can’t burn hot enough for these people. God Bless the patients who can endure this pain for decades. and thanks to ALL those who work long hours to try and help save our lives. And all those who lie, who steal what little research funds we do get, who malign us behind closed doors…just watch over your shoulder. your days of lying through your teeth are coming to an end
I hear ya.
Sometimes I think taking the streets, burning hay, rubber bands or even torching a few cars, smashing windows would get us on the frontpage. Some groups do it, but that is not my style.
Some people tune out when spoken to in anger and are easier to convince with reasonable arguments; I know I would.
Problem is both approaches demand a lot of energy and that is the bottleneck for everything we (want to) do.
I hope the psychosocial lobby will get what it deserves someday, but for now I am focusing on awareness, biomedical research and treatment. Fighting a war on more than one front costs a lot of energy. It’s a matter of priorities.
Very intresting post. Thank you. Also, as it turns out, very timely for me.
I have been reflecting on this very topic. I had a very traumatizing ME experience this week. It was for me – a game changer. It caused me to think long and hard about this very issue and my own personal contribution.
This incident affected me so profoundly, that I understood I was standing on the edge of a cliff. I was either going to fall over the edge into the abyss (emotionally, physically) and never return, or I could back away and fight like hell, (ie: in the sense of using appropriate anger to fuel awareness raising efforts) using every little bit of energy I had. When I saw this, I realised I really did not have an option. Personally, the abyss would have been far more destructive to my health than tapping into my anger from this point on. All the same, it was a tough call, as I have largely avoided anger in association with this illness and I had to sit down and really examine why. What were my personal beliefs about anger? What was my experience around it and my relationship to it – and especially in the context of this illness?
The most obvious excuse for avoiding anger in this context for me, and for most of us I believe, is simply biological: there are times when we simply cannot physically do it, and these times naturally fuel fears that if we were to spend precious reserves that are keeping us alive on anger, then this might not only be a great way to spend that energy, but it might just make us worse- if that was even imaginable!
I acknowledge that you have to work within the scope of what is real and when your too ill to process sensory stimulation for example – you use your energy to enable your body to make through the next hour. It is the subsequent times -where I might be able to manage spending a little energy on anger, but I dont becaue of a. a FEAR that I will return to my bed or b. a fear of how I will be judged or c. a fear that I will alienate people etc. I had to really look at….and in doing so, I realised that at appropriate levels and appropriately channelled, articulated and managed, allowing myself to be angry and giving expression to it -will not return me to my bed/alienate me from those who matter and who are intended to join me on this journey /or manifest any of my other fears.
My reflections also made me realise -that our extreme physical limitations, which at times makes it dificult to tap into anger, makes us the soft target – for abusive and narscarstic doctors/governments/others. It is true, there are times when we are too ill to be able to object to behaviour that is inappropriate/offensive/dangerous. And because we do not register our objection and what is more to the point -*do so loudly enough* – nothing changes. All it does, is signal to the abuser, that they can hit us harder. And unsurprisingly, they do.
If, as an ME patient, you were weak/having a bad day and you were attacked in the street and fighting for your life – what would you do? At the very least, you would hold up your hands to sheild yourself from physical blows. Few of us would simply lie on the ground spread eagle. Yet, this is what we are doing, each time we forego the opportunity of tapping into anger associated with this illness and letting doctors/government/friends/family etc known that they have overstepped boundaries. Each time we do this, we send a message – collectively – not only to the abusers that they can continue, but also to ourselves – that it is acceptable (even if “for now” -ie until the next time when we hope we have more energy to cope) -but the point is – tapping into anger and mounting an appropriate response -however small (even if holding up your hand and saying -’stop, just stop”, takes practice. Telling ourselves -next time-is just a way to avoid tapping into anger.
For example, when we go to a new doctor or the ER or ED – we expect and brace ourselves for ridiclue/inhumane treatment and grit our teeth through the experience. In short, we expect it. But I ask you, how many other patients go with that expectation? None. So why should we continue to do so?
To my mind, as a patient community, we have not registered a protest loud enough to make an impact – and so, as a community, we are still at the starting line. It also does not help matters at all, that there is division within the ME and CFS community itself.
The passion demonstrated above by Billy Boy Reeves – is what we must all muster – adjusted to levels we are personally comfortable with AND irrespective of your view (ME-v-CFS-v-ME/CFS) we have to pull together and be respectful of our different view points whilst remaining united in our cause. A divided army never won a war.
The starting point though, is to acknowledge – that it is ok, to be angry. It is justified and it is and can be, very healthy -if used and monitored within individual means. Anger is simply an emotion and as such it serves a place and a purpose equal to every other human emotion. It is our judgment that makes it otherwise.
Anger is, as the author you quoted, healthy – when used in the right circumstances and at the right time.
Our anger is justified as reflected by the circumstances so aptly expressed by Billy Boy Reeves, and so too is the time…which is NOW…whilst ME/CFS is being reconsidered in light of news about XMRV.
The abuse we have collectively suffered as a community has made us “compliant”in the same way a batter wife becomes so. Initially she tries to register small protests, but is punished for them, until she realises -that her very survival is better served by avoiding upsetting the abuser. As a patient community – we are the battered wives. What we need to do now though – is say ENOUGH – I am not tolerating this any more. I deserve more. I expect more and I am going to have this expectation met.
Anger can light a fire. Passion then fuels the flames.
Anger does not, per se, result in a crash. Sustained or prolonged anger might, if not carefully monitored, but this is so with the expenditure of energy on anything that goes beyond our own individual tolerance levels.
Do not shy away from anger – as I have done, for so long. You need it. We, as a patient community need it. Use it. It will serve you and us all, as a community- well.
It will send a message to those who need to hear it – and when they do – we will begin to be viewed as individuals who will not be and cannot be pushed around. Then we will see change.
I haven’t seen much doctors personally lately (apart from De Meirleir and family doctor) as I am also suffering from doctor-fatigue
but judging from facebook updates from patients, articles in magazines for doctors and newspaper articles, the message is getting through, slowly but steadily.
Is it?
Is the message getting through?
Based on my own recent experience in the ER of a major teaching hospital, I have to seriously question that. I also spoke to a patient yesterday, who told me that in handing his doctor some literature promoting a talk on an internation expert on the illness, this doctor said”well, we know how to treat CHRONIC FATIGUE” and took the literature and screwed it up and threw it in the bin, in front of this man. This man is has been ill for many years, has no income and is currently looking at a life on the street. Do you think he should bit his tongue and continue with the same passive, non confrountational means of awareness raising? Would you make this recommendation to him?
Also, dont forget, that information on this illness has been around for over 22years (CFS)-75 years (ME). So, yes I have to agree with you, that the information is indeed getting through slowly – but it is finding its way into the garbage bins of a lot of doctors.
Whilst I agree with you and the author that using anger can, at the wrong time and in the wrong circumstances, preclude your message from being heard,
we need to change our attitudes and harness our justifiable anger NOW – especially in light of developments with XMRV. We were overlooked for 22 years in favour of research $ going into HIV/AIDS. Why? Well, for the most part, the illness was showing up at that time, predominantly in women. So we were, easy to classify as hysterical. Secondly, we were not dying as obviously and quickly as AIDS patients.
If we do not examine why we have not made significant headway in the last 22 years and change our approach NOW in light of XMRV developments (irrespective of whether or not is causative or a passenger virus), we are not going to get $research EVER.
We have reason to be angry. If we dont channel that anger now into really constructive activism, then we will NEVER get the real research $ etc we need.
I think you are mistaken if you believe that more of the same sort of passive awareness raising, without critical examination and change to our approach, is going to suddenly open up the government purses across the globe After all, it has not done so in the last 22 years – so there is no reason to believe, that it will do so in the future.
Yes, the news is slowly getting through to doctors and doctors organizations. Doctors who provide biomedical treatment to patients in or outside of medical system still face bashing or being sued, but some voices are starting to protest from within the medical community.
Lately I have learned to take statements from patients with a pinch of salt. Negative studies are downplayed, questionable positive studies heralded, podcast are manipulated so only the MLV positive news remains, …
There is no reliable clinical test for MLVs yet, and scientist don’t know whether MLVs are pathogenic, so taking this kind of research to your doctor is rather pointless, because he or she cannot act upon it.
The Lo & Alter study and the workshop created more questions than answers. Some new papers are to be expected before the end of the year.
Have you considered that research into the link between MLVs and ME/CFS might lead up a blind alley?
Yes the news is slowly getting out – its still S-L-O-W-L-Y getting out after 75 years and that is the point. It’s too slow. We have had enough – irrespective of XMRV. I hear what you say and as I said – it does not matter what the nexus is to ME & CFS (ie: cause or effect). The point is, that we need to leverage this opportunity.
The patient who approached his doctor, did not do so with news of XMRV, he went with a flyer to promote a talk by an International ME expert on how to diagnose ME. Oh, I agree with you – it is a complete waste of time taking any literature on XMRV to your average doctor – after all – how are they going to get their heads around that – if they are still talking about ME and CFS as “CHRONIC FATIGUE”????
My friend -(the patient I referred to) has lived with ME/CFS – for many years which has left him with an income and now a family. Do I know whether he has XMRV? No. Do I care? No. What I care about is the fact that he/we are amongst the most chronically ill in society and have been completely abandoned by governments across the world and in turn – our own families.
XMRV is not the issue – it is – however, the opportunity we need. It is – a call to action – because we have had enough!
Johan I also wanted to address this remark you made:
“There is no reliable clinical test for MLVs yet”
I am sure Prof De Meirleir would love to hear that. I cannot recall whether you are patient of his or not.
I am and this is what I know.
1. He has been studying the retroviral connection with ME & CFS for years. Well ahead of WPI. In fact, I understand that he assisted them in finding it. Remember, a retro virus with this illness was first raised and found in 1992. A retro viral association with this illness is not new. Prof De Meirleir has been studying this for years.
2. Based on his knowledge, he has spent a long time, designing specific tests including specific higly sensitive pcr and western blot antibody tests to detect XMRV human strain – there is a 5% DNA differential between that found in Humans and that found in the mice – consequently, it is not entirely accurate to report that it is *the* mouse virus in humans. It is a variation of it. Profs tests are specific to identify the very specific human DNA genetic sequence. Further, I understand that he has set up *dedicated* labs for the testing of XMRV – and nothing else.
3. He verifies his results with a **number** independant labs, that have been set up according to his very high standards and guidelines. Because of this, the entire testing process presently takes many months.
4. He can and has been testing for both xmrv and mlv.
5. His processes were the outcome of years of knowledge in this area.
6. I also believe he has a paper trail in relation to results that has been designed to counter every anticipated and forseeable scientific and legal criticism and objection that might be raised regarding his test (ie: reliability etc) and facilities. Only a person with a real understanding of retro viruses in ME and CFS and who had worked in this area for many years, would be able to design such a system and be able to dot every ï”and”cross every “t”. Why did he go to such painstaking lengths to do this? Because he knew the storm that was going to brew, the mis information and the accusations that would come with it.
6. As for the editing of information online etc and or down playing information- regarding XMRV / MLV, dont forget that is the internet – so dont discount researchers and other vested interest groups doing this.
Further, you dont have to be within the research community to know that they are presently at each others throats right now over this. And I also understand, that the angriest group are the HIV/AIDS researchers. Why? Because they didn’t find it. Pretty childish – but from what I understand, not uncommon – because research is an extremely competitive field -where they are all chasing a piece of the $research pie.
And the reason they didn’t find it is because the virus does not act in a manner like HIV.
Prof DeMeirleir, is – as I am sure you know – an extrodinarily intelligent man. He is also passionate about this field. He is internationally renowned and held in the highest regard across the world.
I am not a betting person – but if I was – I would not hesitate in backing Prof DeMeirlier’s test results/facilities.
Given that they exist and this mans reputation – I would not be suggesting that there are currently *no* reliable testing facilities for XMRV & MLV.
As for being led up a blind alley with regard to XMRV and ME & CFS – what would you prefer? No biomedical research at all – and more of the Wesley/CDC psychiatric, we were all abused as children and have personality disorders approach?
As an aside, the Nightingale Research Foundation (Canada) has data that shows that persons who contract ME and CFS have well above average IQ’s and had professional or very good jobs that they held for many years. (ië: stable lives) Their research of over 6,000 patients also shows that psychiatric illness in such patients is rare / or the exception. The average psychiatric illness in patients was well under 2% and well below the general population average (over 5%). Further, most psychiatric conditions manifest well before the general onset age of ME (average age 37 years)
I will gladly run up any number of alleys following biomedical research, because that is where the answers lie and one day, one such alley will not be a dead end.
@standup4me
Yes, I am a patient of De Meirleir, but I would just love to see a paper trail of all the claims he makes. I know plenty of patients, none of them back to work, some still very sick after years of treatment. There are patients who got better, but they are hard to find (still trying though).
DML uses the VIPDx test and as for the independent labs he uses to verify results, you must have some inside knowledge. As a patient of his (and getting the bills), being in contact with other patients, being a member of forums (even private forums) I see you mentioning things I have never heard of. Willing to share your sources?
I agree with your last sentence and the use of the plural of alley. I don’t feel like betting all the money, attention, and energy solely on XMRV.
standup4me:
Thanks for your comments and history on KDM and retroviruses!
I want to mention that RVs were brought up before 1992. Dr. Cheney, and Peterson? suspected them in early CFS epidemic years, and attempted to pursue that path. There is video some place where Dr. Cheney tells of consulting with a Neurologist on his CFS patients’ brain scans. The Neuro showed him scans that looked the same as his. Dr. Cheney learned they were brain scans of AIDS patients.
(Some may know there is a condition coded as AIDS Related Dementia).
Dr. Cheney, among others, provided some of the blood samples for Elaine de Freitas’ study you referred to. Much, much more to that story, of course.
In Dr. Byron Hyde’s book, “The Clinical and Scientific Basis of Myalgic Encephalomyelitis Chronic Fatigue Syndrome”, there is a 4 Chapter section on “The Search for Retroviruses in ME/CFS”, which began in >1986 <.
{Besides various emotions around this, 24 years later, I find this ironic, given Dr. Hyde's rather scathing dismissal and critique of the WPI and XMRV.}
I saw Judy Mikovitz 1st Public Presentation on XMRV in Oct 09, at the University of the Pacific. She and her Power Point slides of XMRV and it's actions were stunning!
Such that I totally burned myself out, getting that word and hope out around the Globe…before the naysayers could get hold of us! I assumed that would become a draining and divisive period, and for awhile, vowed not to listen to any of it. I only wish we'd had a few months of that, not more of it still, after one year.
I do think the XMRV discovery does not render the 5,000 ME/CFS studies from "other" organic perspectives irrelevant. Nor, even those now that focus on specific body systems, rather than XMRV/Immune itself. WHY? because I do not think they are "other", but rather, downstream effects of XMRV, and/or related Retroviruses.
TC,
Katrina
@Katrina
There are millions of ME/CFS patients who just want their life back, who just want to believe that the one culprit has been found, but with research on this level it can take years before the dust settles. From an abstract point of view negative studies are as valuable as positive ones.
I wonder if you need a sense of progress, or of being listened to to move a social movement on from being angry and to focus upon being more gently persuasive?
Were any external changes mentioned as being a part of this process?
@Franken
It wasn’t mentioned, but I believe we should keep the initiative and not wait for others to change our strategy or to talk to other people in power.