"We Are Not Alone" on CFIDS Assn web site (by Suzanne D. Vernon)

dannybex

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Dannybex, I knew just how public this forum is the first time one of my posts came up on google. It gave me a shock. But what I meant was, do we have some of the "psychobabble community" here with us? If there are, would they please declare themselves.
Well, there could be, but I doubt it...they're too busy overcharging patients and overprescribing drugs. :Retro smile:
 

Martlet

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The forum is not a private one WildDaisy -- anyone can read any posts, any threads, except for the New Day Private forum.
Absolutely! People with friends or family members with ME/CFS seek information too. Some of them will have already read that it's of psychological origin and, after reading some of the posts, might be forgiven for believing that was a correct assessment. I wouldn't call them psychobabble folk, but they are less likely to support and advocate for us if they find us unreasonable. I think we must remember that we are always writing for a wider audience that the sick community and word our posts accordingly. [/QUOTE]

The CAA have clearly been listening, and making some changes.
I believe that to be true.

“Resentment is like taking poison and waiting for the other person to die.”
I so agree with that. I have seen forgiveness work wonders for people's well-being.
 
D

DysautonomiaXMRV

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There is a common argument repeated by the psycho-babble community in the UK, that if ME/CFS people protest, then patients will get less as they 'scare off' researchers. This was recently repeated (again) in the Guardian newspaper - who's author of the article 'The Trouble with ME' claimed that Annette Whittemore 'had' been excited about XMRV and researchers around the globe 'had' been interested as much as her. A somewhat strange statement when XMRV research is only increasing, not decreasing.

Lets consider then, for one second - the concept of surrending to people who never got you off a desert island, and this if fine and dandy. So we should not 'call out' the bad guys on this premise, because doing so, is (apparently) going to waste our big chance to get funding.

There is however one problem with this.

There is no evidence in the history of medicine, that patients protesting steers research negatively in any way whatsoever.
Indeed,one would argue (logically) the more people protest, the faster things happen as people are heard, seen, and listened to.

The behaviour of 'gays' with HIV or the behaviour of challenging autistics, or the behaviour of 'us' is irrelevent.
We do not sit down at meetings, and tick boxes. We just (sadly) watch people not tick boxes.

The ME CFS community is impeccably behaved. We are, ironically for us, far too ill to protest, to march on the streets, and to my knowledge no ME CFS patient has ever attacked (even with a cream pie) a psychiatrist over the multiple decades this illness has run. That is a very good record of behaviour in my book. Compare the compliance of ME CFS patient to endless shootings and arson attacks (for example) in the USA over something like views on abortion. Or if talking disease, how about hemophiliacs who were infected with HIV in Canada. Did they remain silent for fear of reducing funding? No, as HIV was killing them.

XMRV is killing people also, just very slowly.

Research is enabled by grants (funding) and funding is not dependent upon if patients are 'nice' or well behaved, or if patients chose to expose malignant scientists who, genuinely, continue to contribute (unecessarily) to the suffering of their patients. This - is what is classed as psychobabble theorists as bad behaviour. In otherwords, exposing them!

Governments control the flow of money, ultimately.

So far our collective governments have given us zero, zip, nothing, be it in the early days of ME CFS in the 1980's or the internet enabled 'online' age of 2010

All decades that have passed with this disease as 'real' have produced the same response of no help for research, and hence patients protesting is perfectly normal and expected after potentially millions of people dying (globally) over the last 30 years.

If one didn't verbalise one's desperation - who would benefit? Patients, or those who constrain and strangle bio-medical research funding to a premature death?

It's far too late in the day (in my view) to expect people to sit down (en mass - not regarding this forum obviously) and remain docile when living a life of disablity levels (even in children) equal to other severely restricting diseases that are fully established and helped. Some ME patients have a quality of life, equal to those dying of late state AIDS. Should these patients also 'tow the line' and not demand help now? Psychobabble theorists have never been in these patients procarious position.

One only creates change, by making change happen. Things happen, by people selling the same menu, then realising there are no customers. If one says nothing about leaving - then the chef cooks the food, presuming all the customers are still seated in the restaurant. And so change never happens.

Who benefits from drastic change not occuring, and who suffers the consequences? We all know.
 

gracenote

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Some of them will have already read that it's of psychological origin and, after reading some of the posts, might be forgiven for believing that was a correct assessment.
I think this is SO wrong. Everyone has a right to their own reactions whether it's anger, frustration, impatience or is even "unreasonable" ideas. Please do not suggest that our very real concerns, and perhaps our imperfect way of dealing with these very real concerns, gives anyone the excuse of labeling us as having a "psychological" problem. The threat of being branded as such is nothing more than a form of intimidation. We are people with a real medical illness. We do not need to prove our sanity to anyone regardless of their prejudices.

And why should someone else decide for me if it is "unwise to keep dwelling on past mistakes" when it feels to me that similar mistakes continue to occur?

And why is it being assumed that very passionate discussion on subjects where we disagree is based on resentment? It is quite possible to vehemently disagree and advocate for change, without resentment or anger being at the root of it.

I do, however, resent being talked to in such a way.

----------
ETA: This post was written in response to Martlet's original post which was edited while I was writing this one. (Not a problem that it was edited, just that my "dwelling on past mistakes" reference no longer has a context.)
 

Mark

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Progress

"I'll tell you my idea of progress," says Tony Benn. "You come up with a good idea - it's ignored. If you go on, you're mad. Then if you go on, you're dangerous. There's a pause. And then you can't find anyone at the top who doesn't claim to have thought of it in the first place."
 

garcia

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There is no evidence in the history of medicine, that patients protesting steers research negatively in any way whatsoever.
Indeed,one would argue (logically) the more people protest, the faster things happen as people are heard, seen, and listened to.
Brilliant post Dys!
As the saying goes "The squeaky wheel gets the grease". We need to squeak louder and louder if anything. We are invisible. That is the problem, not that we are protesting too much.

In the UK, biomedical research has consistently been denied funding by government agencies, not because of patients, but because it doesn't fit in with their agenda.
 

Nina

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Just last weekend people were talking about hyperventilating if the rumored CDC Press Release proved to be negative. The mantra was pass the paper bag around, I can' stand the tension. It just adds fuel to the psychobabble community that we are a bunch of psychotic and neurotic psychosomatic individuals.
The whole "bag" thing was clearly a joke and was presented as such. To say that stuff like that gives fuel to whoever wants to label us neurotic is unfair and I don't believe at ALL that it is true. This is always a matter of context.

I am well aware that everything on this forum can be read by whoever is interested for whatever reason. Yet IMHO the purpose of this, or any ME/CFS or diesease-related forum for that matter, is to find yourself among people who have experienced what you are going through and to provide help and advice, a space for discussions, and certainly all of that with a little bit of humour where appropriate.

Unless you are skimming through the posts with the sole intention of finding something to solidify your ready-made opinion that all M.E. patients are neurotics, there is no way you could be getting this impression from what is being wrote on this forum.

The fact that a lot of people, including myself, are very concerned about the current development of research into M.E. is nothing but human. We are fighting for our lives here! It's not our duty to watch every word we say on a patient community forum so that it cannot be twisted by someone who means to harm us.

I totally agree with DyautonomiaXMRV: How much funding is spent on a disease has nothing to do with how "good" or "bad" the patients behave. If anything, M.E. patients have been too nice and too patient. To me, what ecoclimber suggest sounds like "you better be happy with the little you get, because if you dare to criticize that, you will get nothing at all". That is unethical, and the last thing M.E. patients need is to be silenced any further!

Like some others here, I am also not happy with the patronizing tone in ecoclimber's posts.
 

Cort

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There is no evidence in the history of medicine, that patients protesting steers research negatively in any way whatsoever.
Indeed,one would argue (logically) the more people protest, the faster things happen as people are heard, seen, and listened to.
CFS patients should protest vigorously - a good bit of my time is taken up writing articles proposing that they do so - trying to get them more engaged. I came to the conclusion that unless something remarkable happened out of the blue that engage the scientific community (like XMRV) that political action was the only way we're ever going to get decent funding a decent amount of time.

It's true, though, that protest movements have suffered severe backlashes when they didn't work skillfully. Just how to effectively protest is a huge question for protest organizations.
 

akrasia

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Goodness had nothing to do with it

In an early interview Judy Mikovits when asked how people could raise money for research suggested taking a page from Act Up rather than cracking open our piggy banks. And she should know, HIV research was her primary research interest at the National Cancer Institue. She watched the whole catastrophe unfold and saw what kind of advocacy worked, SILENCE=DEATH
 

akrasia

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Embrace the view propounded by Eco Climber, who gets this week's award for the most pompous, posturing post, Martlet and Cort, and you end up with the CAA who in the name of inclusivity, never publicly stood up to the psych lobby, going so far as to include Peter White as an authority on this disease.

Remember who your friends are. The first words out of Annette Whittemore's mouth at the October CFSAC conference was M.E. is not a psychiatric disease; it never was. These were the words Hilary Johnson spoke in Oslers Web. Whatever the CAA and its supporters say now, those are the words they were never willing to utter when the proverbial speaking of Truth to Power was desperately needed. You have not compromised any research into this disease by your thoughts. The group that regarded itself as our national spokesmen abandoned you and reinforced the marginality you, we, find ourselves in. Remember that.
 

jace

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When I was first hit by the train that is ME, pulling its wagons of problems behind it, I cast round, asked round and consulted doctors and other professional people who should know better. What was I advised? That I was depressed (so I cracked a joke, always was a smiler) That I was anxious. I calmly denied this. I was told that ME people have no sense of humour. This thread, and many others here and elsewhere on the blessed internet deny that.

A sense of humor is a sign of sanity. I see it in spades in the patient community. Contrariwise, the unconditional supporters of the CAA seem to be so worthy and self-obsessed, they beg the question of who, here, is sane?
 

rebecca1995

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Publishing articles on the front page of Phoenix Rising about psychological treatments such as the Lightning Process provides far more fuel to the Psych Lobby than patients joking about a paper bag.

The first act psychologizes us; the second humanizes us.
 

natasa778

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Easy! Please watch the personal characterizations. Thanks

Cort, I am afraid this smacks of double standards!


Ecoclimber has once again posted a very insulting post, posted from "up high" without ANY EVIDENCE or back up information TO ANY of his/hers I-am-in-the-know-claims. Yes, he/she did not aim his/her comments at any specific person, but the tone of voice was very insulting to a general group of people who do not see the world the way he/she does.

We don't know anything about this person, he/she joined very recently and has posted a couple of VERY patronising and sanctimonious posts.

This Ecoclimber person needs to chill and back off big time, yet not a word from you or other moderators on his/her posts.


Or is should I log a private/anonymous complaint behind this persons back, as in the past that seemed to be the reason some posts got removed (i.e. some members allegedly complaining of offensive nature of someones posts)

Well, ok, take this as my official (but public) complaint about the tone and voice of Ecoclimbers posts. I find them deeply offensive. Is my complain enough. How many people need to complain in order for a warning to be issued, or a post removed? Is there a set number?
 

Cort

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Embrace the view propounded by Eco Climber, who gets this week's award for the most pompous, posturing post, Martlet and Cort, and you end up with the CAA who in the name of inclusivity, never publicly stood up to the psych lobby, going so far as to include Peter White as an authority on this disease.

Remember who your friends are. The first words out of Annette Whittemore's mouth at the October CFSAC conference was M.E. is not a psychiatric disease; it never was. These were the words Hilary Johnson spoke in Oslers Web. Whatever the CAA and its supporters say now, those are the words they were never willing to utter when the proverbial speaking of Truth to Power was desperately needed. You have not compromised any research into this disease by your thoughts. The group that regarded itself as our national spokesmen abandoned you and reinforced the marginality you, we, find ourselves in. Remember that.
If you're going to say that the CAA have never said that ME/CFS is not a psychiatric disease then you'd better back it up.

Here's from a publication from the CAA:

We have learned an enormous amount about the biology of CFS in the past 25 years. Here is a brief summary of 10 major research findings:

1. CFS is not a form of depression, and many patients with CFS have no diagnosable psychiatric disorder. As with most chronic illnesses, such as MS and lupus, many CFS patients become depressed because of the impact of the illness on their lives, but most studies find that the great majority have not experienced depression before the onset of illness.

2. There is a state of chronic, low-grade immune upregulation in CFS. There is evidence of activated T cells, stimulation of genes reflecting immune activation, and increased levels of immune system chemicals called cytokines, which act as chemical messengers between cells.

3. There is substantial evidence of poorly functioning natural killer (NK) cells, white blood cells that are important in fighting viral infections. Studies differ as to whether there are increased numbers of NK cells in CFS patients.

4. Abnormalities in the white matter of the brain have been found in CFS patients using magnetic resonance imaging (MRI) scans. Typically, these are small (fraction of an inch) areas of what just below the cerebral cortex, the outermost area of the brain hemispheres.

5. Abnormalities in brain metabolism describes further as above, as indicated by single photon emission computed tomography (SPECT) and positron emission tomography (PET), have been discovered. Not many patients have had repeated studies over time, but in the few who have, it appears that the abnormalities come and go and predominantly affect the temporal lobes of the brain.

6. CFS patients have abnormalities in multiple neuroendocrine systems in the brain, particularly depression of the hypothalamic-pituitary-adrenal (HPA) axis, but also the hypothalamic-prolactin axis and hypothamalmic-growth hormone axis.

7. Cognitive impairment is common in CFS patients. The most frequently documented cognitive abnormalities are difficulty with information processing efficiency, memory, and/or attention.

8. Abnormalities of the autonomic nervous system have been found by numerous independent researchers. These include a failure of the body to maintain blood pressure several minutes after a person stands up, abnormal responses of the heart rate to standing, and unusual pooling of blood in the veins of the legs. Some have also found low levels of blood volume.

9. CFS patients have disordered expression of genes that are important in energy metabolism. Each cell requires energy to survive and perform its function. Energy comes from certain natural chemicals that are processed by enzymes inside each cell, and that rely on nutrients in the diet. The enzymes are controlled by specific genes.

10. There is a growing body of evidence of more frequent latent active infection with various herpesviruses and enteroviruses in CFS patients. The herpesviruses include Epstein Barr virus, HHV-6 and cytomegalovirus, but not the herpesviruses that cause cold sores and genital sores. Other infectious agents also can trigger CFS, including the bacterium that causes Lyme disease, giardia duodenalis, Ross River virus, Q fever, West Nile virus and human parvovirus B19.
 

Cort

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Cort, I am afraid this smacks of double standards!


Ecoclimber has once again posted a very insulting post, posted from "up high" without ANY EVIDENCE or back up information TO ANY of his/hers I-am-in-the-know-claims. Yes, he/she did not aim his/her comments at any specific person, but the tone of voice was very insulting to a general group of people who do not see the world the way he/she does.

We don't know anything about this person, he/she joined very recently and has posted a couple of VERY patronising and sanctimonious posts.

This Ecoclimber person needs to chill and back off big time, yet not a word from you or other moderators on his/her posts.


Or is should I log a private/anonymous complaint behind this persons back, as in the past that seemed to be the reason some posts got removed (i.e. some members allegedly complaining of offensive nature of someones posts)

Well, ok, take this as my official (but public) complaint about the tone and voice of Ecoclimbers posts. I find them deeply offensive. Is my complain enough. How many people need to complain in order for a warning to be issued, or a post removed? Is there a set number?
No all you need to do is report the post and point out specfically where you feel the poster personally insulted someone. Use the triangle with the exclamation point at the bottom of the post to do that. thanks
 

gracenote

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From akrasia: you end up with the CAA who in the name of inclusivity, never publicly stood up to the psych lobby, going so far as to include Peter White as an authority on this disease.
From Cort: If you're going to say that the CAA have never said that ME/CFS is not a psychiatric disease then you'd better back it up.
I don't think these are saying the same thing. I would love to see evidence of when the CAA has publicly stood up to the psych lobby. I think that is the question being raised here. (I don't think any one has said that the CAA is saying ME/CFS is psychiatric.)

Why do you need to pull the post? I don't understand what the violation is here.
 

bel canto

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Official complaint #2

ecoclimber quote:
I talk to Annette Whittemore, Judy Mikovits, Dr. Bateman. Dr. Vernon, Dr. Goff, Dr. Hueber, Nancy Klimas, Dr. Montoya DR. Coffin, DR. Lerner as well as other leading bio labs across the country on a frequent basis and that is why I can say the things that I am writing about in this thread. It is difficult enought to be raisning money to fund research for CFS but nearly impossible if there is an atmosphere of confusion and controversy surrounding the research. The research has to be solid through validation from other credible researchers and labs before donors will provide resources to fund further studies. Controversial speculation and mud slingling destroys my chances of finding research funds for many of these organizations.

This posting, along with several others by ecoclimber is deeply offensive and insulting to us as a community.

also, I DO NOT BELIEVE ANYTHING THIS PERSON POSTS!!!!

He/she talks to most of the major researchers FREQUENTLY and HE is finding research funds for MANY of these organizations????

and WE are destroying chances for funding research????

I am making an "official" complaint echoing Natasa778 above, and wanting it publicly noted, not "behind the scenes".

And I am refraining from saying what I REALLY THINK in deference to the rules of this forum.
 

natasa778

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No all you need to do is report the post and point out specfically where you feel the poster personally insulted someone.
It is much more subtle than that I'm afraid.

The poster did not insult anyone specifically 'somewhere', but did so throughout his/her post via the tone and insinuation.

The poster also was not insulting to anyone 'personally', but with the tone and insinuation was insulting a whole group of people (and I personally feel a part of that 'group').

So where do we go from here?
 

Cort

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Cort, please don't pull that post, just point out the evidence.
Here's some more: the Associations support for the Canadian Consensus Definition

Does the Association support use of the Canadian Clinical Definition for ME/CFS (CCD) published in 2003 by Carruthers, et al.?
The short answer is yes.
The Associations attempt to thwart the new DSM ruling

What is the Association doing to combat the changes to the DSM-5 manual that affect CFS?
The proposed DSM changes (www.dsm5.org) were posted on Feb. 9, 2010 and the public comment period is open through April 20, 2010. Rather than act hastily, we worked to understand all the factors involved with these proposals and how to most effectively influence the final decisions. We have a tradition of being deliberate and thorough in our actions that we will uphold. We consulted with professionals who have expertise in the processes employed by the American Psychiatric Association and World Health Organization to institute changes that affect ICD coding and clinical care. On April 1, 2010 we submitted a detailed set of comments and an urgent recommendation to abandon the proposal to create a new category of mental disorders called Complex Somatic Symptoms Disorder (CSSD).

Validation of biomarkers for CFS would substantially reduce the impact of the proposal to create a category of "chronic somatic symptoms disorder." Validating CFS biomarkers is our top priority.
The Associations stance on the Empirical Definition - long regarded as a way to psychologize CFS

What is the Association’s position on the CFS research program at CDC? Do you support the CDC’s empirical definition of CFS?

The Association has been very public in its criticism of the CFS Research Program at CDC. You can read a summary of our recent efforts. The Association does not support use of the CDC’s empirical definition of CFS in federally funded research and has repeatedly urged that CDC discontinue selecting CFS cases for its studies using these guidelines. The Association has never funded any research based on the empiric definition, nor has any education supported by the Association been based on the empiric definition. Review the Association’s applicant research guidelines for defining cases and its current eligibility criteria for the BioBank.
Even Suzanne Vernon's latest paper arguing that infections cause diseases like CFS and pathogens need to be more heavily studied

Many infectious agents have been implicated in CFS. Chronic diseases can stem from infectious agents and the microbes within. Human papillomaviruses are examples of infectious agents that cause cancer. The composition of bacteria in the gut determines healthy metabolism. Infectious agents likely determine more immune-mediated syndromes and chronic diseases including CFS than is currently appreciated by the scientific and medical communities.