Edward Shorter to give talk on CFS at NIH

[mfairma]

Hunger strike, grafitting HHS, parading naked around the building, renting cars and driving in circles around it blasting the same song as loud as possible, throwing rocks through those giant windows, renting an 18 wheeler and hiring a full marching band to come parading out, hanging off the side of the HHS building if they ever bring back CFSAC there. Anything, as long as it's more urgent and aggressive than holding up signs in a city whose workers pride themselves on ignoring protests and sending letters and petitions expressing our frustration and concern.

The situation has long been bad enough that patients should have been willing to risk life and limb and security to ensure that it doesn't continue, yet advocates always revert back to vanilla initiatives and get bogged down arguing about silly things like whether the government's response at any given moment is proportional, which of course it never has been. I understand that patients are very sick and the community is disorganized and underresourced, but where is the fire? And isn't it hypocritical to expect the government to understand the severity of this crisis when we don't represent it in how we engage? The concern years ago when I brought up doing a real, honest hunger strike was that you couldn't ask sick people to suffer more, but where are we now, 4+ years later? What of those who have killed themself in the meantime and what of our collective suffering?

I don't have fire anymore. I'm broken. What's left crumbles with the least resistance. I can't summon the care anymore to try to organize anything. I just can't. But I used to have it and I think we would be in a better place if the community was willing to take greater risks to force our issue onto a bigger stage. It comes back to the question I asked before. When is enough enough, and what does it mean for us to be in that place?

Ultimately, though, it doesn't matter how I feel. The community will absorb this insult as it has all the others and we'll keep on hanging on every new scientific development, hoping that will make the change. One day it will.

 

[dreampop]

This is ripe for a FOIA, no? Maybe @JeannetteBurmeister could consider it? I wouldn't mind doing it myself, I could probably figure out who was in on inviting him, and possibly any documented discussion as to why. Problem is it will take ages for them to get around to it.

@mfairma, I understand the urgency you have. I have it too. However, your drawing from a very sick group that is spread across the country and may not share age/income/interests in common. There is a reason effective leaders are praised, because aggregating diverse people to single goal in a single way is a truly difficult task. Its also a different generation, dancing naked around HHS maybe would have worked in the 60s - but by the 80s it would been insane for the AIDS people to do that.

The 2010s are a different game, I think if millions missing could continue to grow it would be an excellent venue. Documentaries are another effective modern strategy - not ones only people with CFS will watch, but things like VICE. Petitions are jokes. Its about accessing a long-term media narrative through which congress is taken on. There are ways to do this and millions missing is certainly a good start.

 

[dreampop]

The formula for a better situation is simple, increase the cost of maintaining the status quo past the cost of enacting change of leadership and spending in the NIH. This means, political pressure on members of congress and widespread support.

 

[Kati]

Hunger strike, grafitting HHS, parading naked around the building, renting cars and driving in circles around it blasting the same song as loud as possible, throwing rocks through those giant windows, renting an 18 wheeler and hiring a full marching band to come parading out, hanging off the side of the HHS building if they ever bring back CFSAC there. Anything, as long as it's more urgent and aggressive than holding up signs in a city whose workers pride themselves on ignoring protests and sending letters and petitions expressing our frustration and concern.

The situation has long been bad enough that patients should have been willing to risk life and limb and security to ensure that it doesn't continue, yet advocates always revert back to vanilla initiatives and get bogged down arguing about silly things like whether the government's response at any given moment is proportional, which of course it never has been. I understand that patients are very sick and the community is disorganized and underresourced, but where is the fire? And isn't it hypocritical to expect the government to understand the severity of this crisis when we don't represent it in how we engage? The concern years ago when I brought up doing a real, honest hunger strike was that you couldn't ask sick people to suffer more, but where are we now, 4+ years later? What of those who have killed themself in the meantime and what of our collective suffering?

I don't have fire anymore. I'm broken. What's left crumbles with the least resistance. I can't summon the care anymore to try to organize anything. I just can't. But I used to have it and I think we would be in a better place if the community was willing to take greater risks to force our issue onto a bigger stage. It comes back to the question I asked before. When is enough enough, and what does it mean for us to be in that place?

Ultimately, though, it doesn't matter how I feel. The community will absorb this insult as it has all the others and we'll keep on hanging on every new scientific development, hoping that will make the change. One day it will.

Hi @mfairma, I think you have described,what dis-ability really means. You said: " I don't have fire anymore. I'm broken". We are all broken. It's easy to get broken simply facing disbelieved families and friends, doctors who have no clue, disability insurance, and the simple day to day life while dealing with this illness.

What I find unfair is that you seem to blame patients for the lack of action and for the lack of organization. I think patients tried. And keep on trying. It may not be what you like, or how you'd like things to happen. However it is simply how things are with physical and cognitive disability that we each seem to be affected at different degrees, at different times. It makes organization and public event nearly impossible. And those who manage to do it, those who participated in the last MillionsMissing protest event, they might still be missing in action.

Perhaps one day we will be able to measure the amplitude of our disability, the level of sickness we are afflicted with. In the meantime, patients do what they can, when they can, and basically being told by another patients that other people's efforts are lame, is not going to change my ability to advocacy. In fact it is a big turn off.

Best.

 

[Sean]

Maybe it is a cunning plan by the biomed people to show off the BPS arseholes in their worst possible light.

Shorter would certainly be a good choice for that.

But otherwise, yeah, it is disappointing, to put it mildly.

 

[Neunistiva]

Hi @mfairma, I think you have described,what dis-ability really means. You said: " I don't have fire anymore. I'm broken". We are all broken. It's easy to get broken simply facing disbelieved families and friends, doctors who have no clue, disability insurance, and the simple day to day life while dealing with this illness.

What I find unfair is that you seem to blame patients for the lack of action and for the lack of organization.

I don't think @mfairma was blaming patients for anything. Patients do try extremly hard. We gather, we donate, we sign petitions... Which has all proven beneficial in one way or another.

But the fact is, despite all our activism, we remain very reluctant to ruffle any feathers.

Millions Missing protest was brilliant, but I don't have several decades time for everyone else to realize it too.

I'm really starting to think that making ourselves a problem for government and society might sadly be the most effective way to be taken seriously.

 

[dreampop]

Maybe it is a cunning plan by the biomed people to show off the BPS arseholes in their worst possible light.

Shorter would certainly be a good choice for that.

But otherwise, yeah, it is disappointing, to put it mildly.

Yes, Sean. I see it as the NIH saying, lets hear both sides of the argument first. I get that. It is their response afterwards that will be most interesting. We have see the NIH avoid BPS research grants for the most part. If they do see CFS as somatoform, they are interested in what biologically it means to be "somatoform" (hence not being conversion disorder and being a neuro-immune disorder). I have seen no evidence that NIH practice aligns with Shorter's beliefs. Even Wallitt believes its neuroimmune, he just defines neuro immune as psychosomatic.

 

[alex3619]

My last blog on Shorter's claims, please forgive the typos:

http://forums.phoenixrising.me/inde...-article-by-shorter-in-psychology-today.1716/

 

[Neunistiva]

I see it as the NIH saying, lets hear both sides of the argument first. I get that. It is their response afterwards that will be most interesting.

The issue is not that there are opposing opinions, it is that this one is not based on science. All arguments that NIH should hear should be based on evidence and research.

Should NIH also take time to listen to arguments that ME/CFS is caused by ware wolves howling, just to make sure we cover all bases?

 

[daisybell]

Maybe NIH wants to understand how truly awful the views of people like Shorter are, and how much damage has been done to us by the drivel the psychosomatic believers spout...??
The only glimmer of decency I can find in this is that it's possible they want to horrify any researchers who may still be sitting on the fence??

Although I know the above is highly unlikely - I can still dream of positives.....

 

[alex3619]

Should NIH also take time to listen to arguments

Aliens. Illuminati. Witchcraft. The Yeti. Once you start this list it never ends. Sound evidence and reason should be an irrevocable requirement.

Yet have we officially confirmed this talk is even going to take place?

I recall I saw a speaker that had an out-there theory on the mind, giving a seminar at Griffith University somewhere in 1993-1995. He made the presentation but I think he got zero people taking him seriously. Just because someone makes a presentation does not mean it will be well received.

 

[alex3619]

Although I know the above is highly unlikely - I can still dream of positives.....

Well, I would find it horrifying.

 

[mfairma]

Hi @mfairma, I think you have described,what dis-ability really means. You said: " I don't have fire anymore. I'm broken". We are all broken. It's easy to get broken simply facing disbelieved families and friends, doctors who have no clue, disability insurance, and the simple day to day life while dealing with this illness.

That's not why I'm broken Kati and that's not what I mean by broken. It's not the disbelief or the suffering. Those I can manage and if I ever get so sick that I can't, then I won't. It's years of seeing the same patterns replay in the community and years of seeing us all get riled up and go off in petty directions -- like trying to get individual people we dislike censured for writing idiotic articles, rather than focusing on the bigger picture -- or turn a page and continue to trudge on.

There should come a point at which enough is enough and we throw ourselves on the track in some fashion. I'm baffled that never seems to happen. I know the reasons you or others may give for why it doesn't, but I am not ultimately compelled. There is this crisis and we who have the ability to make some sacrifices for a greater good do not. I think it's a charade for us all to get upset and angry every time this happens, but for those of us who have even a modicum of support to not make real sacrifices for those without and those to come.

I'm not trying to convince you or anyone. If I were, I wouldn't be speaking so openly on a forum. I apologize if my judgment hurts you -- I don't mean to hurt, the world has enough of that -- but I also don't mind if I'm disliked for saying what I feel. I just don't care.

 

[Kati]

That's not why I'm broken Kati and that's not what I mean by broken. It's not the disbelief or the suffering. Those I can manage and if I ever get so sick that I can't, then I won't. It's years of seeing the same patterns replay in the community and years of seeing us all get riled up and go off in petty directions -- like trying to get individual people we dislike censured for writing idiotic articles, rather than focusing on the bigger picture -- or turn a page and continue to trudge on.

There should come a point at which enough is enough and we throw ourselves on the track in some fashion. I'm baffled that never seems to happen. I know the reasons you or others may give for why it doesn't, but I am not ultimately compelled. There is this crisis and we who have the ability to make some sacrifices for a greater good do not. I think it's a charade for us all to get upset and angry every time this happens, but for those of us who have even a modicum of support to not make real sacrifices for those without and those to come.

I'm not trying to convince you or anyone. If I were, I wouldn't be speaking so openly on a forum. I apologize if my judgment hurts you -- I don't mean to hurt, the world has enough of that -- but I also don't mind if I'm disliked for saying what I feel. I just don't care.

Ok, i understand a bit more of what you mean. However we are still broken, in more ways than one.

As for this thread, you know, pointing the finger at that one person. I think I have learnt not to react as much as i used to. For one, I have no more energy for that. The forum represents a way for many to bond and vent. People will always do this here, there (facebook) and elsewhere. There is still a huge leap between soft targets and hunger strike or committing crime in order to get attention to the disease. I would not recommend the last 2 to anybody.

 

[Hip]

Did you see the subsequent tweet by Professor Maureen Hanson:

https://twitter.com/i/web/status/794194332920193024

So maybe the NIH are inviting Edward Shorter not to hear his opinion on ME/CFS, but rather to examine the curious case of psychologists like Shorter, who, in spite of all the evidence for ME/CFS being a biological disease, doggedly refuse to face the facts. Perhaps the NIH are actually studying Shorter himself, as an example of a psychologist with the sort of pathological and illogical thought processes who have caused so much trouble in the field of ME/CFS.

 

[Never Give Up]

Tweet from Janet Dafoe.



3h3 hours ago
Janet Dafoe ‏@JanetDafoe
@DrMaureenHanson Ron Davis is going to call Francis Collins and Vicky Whittemore and express outrage about this! 1/2

 

[Never Give Up]

Good question. I have not seen it anywhere else.
I would like to know who the other upcoming speakers are.


eta:
The original info can be found here https://webcache.googleusercontent.com/search?q=cache:fXrdrB5bxTQJ:https://irp.nih.gov/news-and-events/events &cd=1&hl=en&ct=clnk&gl=us - source - Jennie Spotila's post.
though it is not solely a list of ME/cfs Special Interest Group meetings and does not seem to list meetings beyond next Wednesday (9 November).

Thank you.

Because who better to give an history of ME/CFS than ES?????

Chronic Fatigue Syndrome in Historical Perspective
WEDNESDAY, NOVEMBER 9, 2016, 10:00 AM TO 11:00 AM

FAES Classroom #6, NIH Clinical Center (Bldg 10)

The ME/CFS Interest Group presents a lecture, “Chronic Fatigue Syndrome in Historical Perspective,” by Edward Shorter, Ph.D., the Jason A. Hannah Professor of the History of Medicine at the University of Toronto. Shorter is cross-appointed Professor of Psychiatry. His past research interests include a two-volume history of psychosomatic illness, “From Paralysis to Fatigue” (1992) and “From the Mind Into the Body” (1994). Since the mid-1990s he has emerged as an internationally recognized historian of psychiatry, with numerous publications to his credit. His “History of Psychiatry” (1997) has become the standard text in the field, joined in 2005 by “A Historical Dictionary of Psychiatry” and in 2009 by “Before Prozac”. This volume argues for a reassessment of diagnoses and treatments for mood and anxiety disorders that have been set aside in favor of patent-protected remedies and diagnoses promulgated by the DSM series. He further explores these themes in his latest book, “How Everyone Became Depressed: The Rise and Fall of the Nervous Breakdown” (Oxford University Press, 2013).

 

[Neunistiva]

There is still a huge leap between soft targets and hunger strike or committing crime in order to get attention to the disease. I would not recommend the last 2 to anybody.

And yet this is how AIDS became one of the most funded diseases.

You make it sound so scary, CRIME, like we are going to rob someone or something like that. The woman that took her clothes off at Millions Missing protest was comitting a crime, and yet no one was hurt and she got bigger news coverage and social media sharing because of it.

Without civil disobedience of the people in the past, we would live in a much worse world today.

 

[taniaaust1]

All I see at the moment are proponents of the psych school desperately trying to plug up the increasing holes in their dam while the water on the other side gets higher. There will come a point when the scientific research breaks that dam, and some careers are going to be washed away.

Its a pity that knighthoods cant be washed away too.

 

[taniaaust1]

Hunger strike, grafitting HHS, parading naked around the building, renting cars and driving in circles around it blasting the same song as loud as possible, throwing rocks through those giant windows, renting an 18 wheeler and hiring a full marching band to come parading out, hanging off the side of the HHS building if they ever bring back CFSAC there.

How about a parade of naked people in wheelchairs ... to protest we refuse to remain invisible. (Im only kidding but who knows maybe it would be a good idea, it would certainly draw more media attention and I wouldnt be against anyone who did that. Maybe we do need to go that dramatic and keep going that dramatic