In reading the comments on patient forums about the new study, “A pilot study of cognitive behavioral stress management effects on stress, quality of life, and symptoms in persons with chronic fatigue syndrome,” I’m struck by the passion but wonder if patients’ energy might be better served by renewing the government phone call, fax and email campaign. Why not confront the source of the problem—the National Institutes of Health, which funded the study—and say: No more.
The researchers of the new study may all be well meaning, and from my Q and A with Dr. Michael Antoni, the study's corresponding author, I believe he is sincerely trying to help patients, but his agenda isn’t the same as patients’ agendas. He doesn’t understand the real nightmare of this disease or he'd know that cognitive behavioral stress management (CBSM) is not terribly helpful. CBSM is something most patients learn over time. They learn, among other things, to pace themselves, to distract themselves, to seek support, and to break an overwhelming project down to bite-size pieces. Are those techniques helpful? Yes. Do they get patients back to work or school? No. Do they enable patients to socialize with their friends and family regularly, or lead normal lives? No.
When Antoni says that CBSM is used on HIV/AIDS and cancer patients with success, I say those patients also have retroviral and chemotherapies, and that is where the real benefits come. CBSM or cognitive behavioral therapy or talk therapy is just a little more icing on the cake.
I believe the time has come to renew the campaign, to flood members of Congress, plus Drs. Francis Collins and Tony Fauci at the National Institutes of Health, Secretary of Health and Human Services Kathleen Sebelius, and Centers for Disease Control Director Dr. Thomas Frieden with faxes, emails and phone calls every day, saying, among other things, no more psychological studies. No more.
In addition, in my view it's time to stop heeding the advice of anyone who cautions ME/CFS patients to stop hounding government officials. Are you kidding me? Change occurs only when people make government officials so uncomfortable, so embarrassed and so beleaguered that they finally relinquish control and begin listening.
It's my belief that patients should stop bombarding government officials with reasonable demands after the following events occur: The psychological studies stop, more money is allocated for excellent physiological research, effective treatments are found, and patients quit being patients and, instead, live healthy lives.
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right on mindy!!!!
ReplyDeleteFight the Power!
Thank you, Mindy!
ReplyDeleteWould it be so difficult for someone in the NIH or CDC to cross check with the SSA regarding patients disability claims -- how many apply, how many receive them, the total cost (estimated by Hermispherx, for what it's worth to be in the billions), longitudinal data, and most importantly how many patients go off of them and back to work within a certain duration of time, say five or ten years. My paralegal said less than 5% of her clients with CFS return to work. This is data that would be simple to acquire and yet I have never seen it mentioned anywhere.
ReplyDeleteCBT has been studied ad nauseum and has never, to my knowledge been *proven* to get people back to work and to their lives. Whether or not people care about CFS patients or their suffering, the cost impact of this illness on our governments and families CAN NOT be ignored. That alone should be sufficient to inspire physiologically based research as CBT/psychological treatment has been a massive failure.
Excellent...as usual. Thank you for all you do to help change the world's view on such complex illness.
ReplyDeleteGosh, you say it so very well. This needs to be heard. I wonder if too many ppl bought into the
ReplyDelete"straus sickness", majored in it in college and now
need jobs to "study straus sickness".
When studied at the NIH a woman doc in the HIV Clinic who was "assessing" me, told me that fevers
are "learned" by children of CFS mothers. Incredible.
Mindy, you wrote, "...in my view it's time to stop heeding the advice of anyone who cautions ME/CFS patients to stop hounding government officials."
ReplyDeleteI'm with you.
Mindy,
ReplyDeleteThis action has already been started as of January 25th and the NIH and CDC have been receiving hundreds of e-mails daily. Here's a link to the letter patients can send: http://www.mecfsforums.com/index.php/topic,4976.0.html
Mindy, thank you for what needed to be told:
ReplyDelete"I’m struck by the passion but wonder if patients’ energy might be better served by renewing the government calling, faxing and emailing campaign. Why not confront the source of the problem—the National Institutes of Health, which funded the study—and say: No more."
Bashing doctors that have spent a quarter century helping us is not helpful. We need all the help we can. And we know she is able to deliver in many ways.
yeehaw Mindy! Great editorial.
ReplyDeleteNIH
Dr F Collins francis.collins@nih.gov
NIAID
Dr A Fauci anthony.fauci@nih.gov
HHS
Kathleen Sibelius kathleen.sebelius@hhs.gov
CDC
Dr T Frieden ftdh@cdc.gov
Dr E Unger eunger@cdc.gov
I'm sorry, but I have to disagree. The critical analysis of flawed research over the years, undertaken by both patients, and supporters like myself, has been vital. We have shown how entrenched psychogenic explanations are, and how flawed they are. It has given people confidence in understanding some of the problems facing the community, and armed with that knowledge, many people are able to make choices, stand up to doctors, and not feel they are 'going mad' or that the illness is their fault - a common problem facing the community because of the entrenchment of flawed reasoning in medicine and psychology.
ReplyDeleteBy all means look at other ways of advocating- but please do not trivialise the work of people like Gerwyn, Tom Kindlon, Suzy Chapman or myself. It's far more than just 'passion'.
An awful byproduct of those flawed beliefs is the way in which we are treated by friends and family. It's insidious disinformation.
ReplyDeleteA small example. Dinner at a friends house, took huge effort to get there.
When asked how I was doing, I just replied 'the same'. I've become cautious with experience.
My lovely smart friend, who obviously asked the question so she could give me her opinion said, 'do you suffer from anxiety?'
No question on symptoms or management, or even on my previous happy descriptions of WPI and XMRV. Just straight to her bias.
I was hurt for a long time but now understand that she is picking it up from somewhere. The blame for that can be laid firmly at the feet of the CBT and psychogenic proponents.
Adding another layer of difficulty to an already difficult life.
Angela, I am grateful to people such as you, Gerwyn, Suzy Chapman and Tom Kindlon. I, too, feel that your analyses of the studies are vital. Without your help, many of us would not understand what the studies are saying and what affect they are having on patients.
ReplyDeleteI am also in favor of seeking change in our government's treatment of M.E. I favor Email Advocacy - NIH/CDC Recognize and Research ME.
To try to undo the ME/CFS e-mail name change fiasco and get this illness put in the correct area of NIH, Please send or write your letters today: (And keep sending them)Also e-mail congress for your area. See full note on my facebook profile page, or see the full discussion here. http://www.mecfsforums.com/index.php/topic,4976.0.html
Patricia Carteer
Two things though-
ReplyDelete1. While I agree that the email/fax/phone campaign should not be abandoned until real progress is made and not just more promises, I also think that care does need to be taken on what issues are advocated for. For example there was a short lived campaign about getting the XMRV Blood Working Group to 'release their results, NOW!'. In my opinion this was not an appropriate advocacy campaign as the Blood Working Group weren't holding anything up but instead were simply analysing their results. The campaign was short lived, thankfully, but I don't think we should annoy and harass people who are honestly trying to get something done.
2. Don't even bother with 'no more psychological studies', instead just insist on 'more biomedical research'. We have to be concise and to the point, these people aren't going to bother reading a long list of all the things we don't want, we have to punch home the things we do want, specifically more biomedical research, a proper case-definition which emphasises and/or mandates post-exertional malaise, acting on the CFSAC's recommendations regarding 5 Centers of Excellence, etc. Don't dilute the message.
I can't agree more that we need to "Stop Psychobabble Studies Now", but I also believe we need to "Stop Letter Writing Now". This is not an information campaign; the government has received hundreds of thousands of long, explanatory letters over 20 years. We need to devise ACTIONS THAT CAUSE A CONSEQUENCE. Here is an example: http://www.mecfsforums.com/index.php/topic,5254.0.html . This is war, and we must learn to attack. It's such a shame that we missed the opportunity to carve XMRV in that piano on the sandbar.
ReplyDeleteI agree it is time to step up advocacy. Psychological research into coping is unhelpful to me as a patient. Learning about what is going on with my body through exercize tests is one thing, but CBT is a whole other ball game. You are right patients find ways to cope, and gathering on the internet to talk and participate in advocacy for ME reform is part of that. The way I see it, CBT is designed for patients to accept the status quo. It perpetuates the prevailing idea: we don't know what is wrong with you and we are not going to find out. The patient is left to learn how to accept illness, rather than be engaged in processs to overcome it. I am interested in a newer preventative paradigm, which sees illness as a puzzle that needs to be solved...not unconditionally acccepted thank you very much!
ReplyDeleteI see patient advocacy as a form of CBT for professionals and government. We are tryig to help them change their entrenched thought patterns and begin to help us recover with investmetn in biomedical reserach and therapies and effective social policy. Maybe we should do studies into the effectivness of this? Now, that would be worth something investing in.
Angela,
ReplyDeleteI’m not trivializing what the patient forums are doing. Quite the contrary. If you read the posts on CFS Central, you’ll see that I too have critiqued the flawed studies and have challenged the authors of these studies, including the CDC XMRV study and the new Klimas study.
However, in my view, critical analysis of flawed research won’t lead to change unless the government is relentlessly made aware of it. Most ME/CFS patients have limited energy. That’s why I believe that energy is best utilized by getting the government to understand that patients are mad as hell and not going to take it anymore.
I believe that bombarding the NIH, CDC, Kathleen Sebelius’s office and members of Congress with a campaign that says, among other things, “NO MORE PSYCHOLOGICAL AND CBT STUDIES for ME/CFS” will probably stop them—that is, if enough patients persist long enough and hard enough.
ACT-UP’s targeting of the government for its failures to address the HIV/AIDS crisis is what led to real change and real treatments. Twenty years ago, had HIV/AIDS patients engaged only in discussions among themselves, wouldn’t they all be dead now? Wouldn’t HIV/AIDS still be a death sentence in the U.S. and other developed countries instead of a chronic disease?
And now, as Dr. Nancy Klimas told the New York Times, HIV patients are for the most part “hail and hearty,” while ME/CFS patients are still waiting to live.
The philosopher Voltaire said that reason always consists of seeing things as they are. What I see is that huge tax dollars have led to break-through research and effective antiretroviral therapies for HIV, while ME/CFS patients get CBT and personality-disorder research, antidepressants and sleep meds. And what I believe is that the ME/CFS paradigm will not change until ME/CFS patients unite and compel the government to cut the crap and start doing the right thing.
Thanks to people for their kind words.
ReplyDeleteI am grateful to lots of people (too numerous to mention) for what they do. I have learned from lots of people from their critiques - for example, I haven't read much sociology but have learned from what Angela (Kennedy) has written bringing in ideas in sociology I would not have been familiar with (and might still not be familiar enough with to write about).
Regarding no more psychological studies: there are always different approaches to problems. I'm not going to tell people not to campaign. However, it should be remembered it may not be successful - people in the UK and the Netherlands for example haven't been happy with what has been funded but there is no sign that there will be no psychological research there in the future. Also, even if there is no psychological research in the US, there can still be ongoing studies in other countries. Basically all the graded exercise therapy studies, and nearly all the CBT based on graded activity/exercise studies, that are used to say these interventions are evidence-based weren't done in the US i.e. US research hasn't really been the problem.
Also, in my opinion, some psychological research can also have a value. Lenny Jason for example has produced many interesting studies.
I think it is a good idea to hound government officials as long as the message is clear and well articulated.
ReplyDeleteWhat I have a problem is when patients yell, scream, and ramble on about conspiracy theories to government officials. All this does is make them think more physiological studies are necessary.
But I have to ask then, Mindy: do you think people like me should stop the analysing? That anything we do that isn't bombarding agencies with letters etc is useless? Because I'd say that was a highly unsafe strategy, and, in light of your response to me, I really need you to confirm that is NOT the case, IF it is not the case.
ReplyDeleteWell said Mindy. Time to chase the hounds!
ReplyDeleteWhat has been done on the patient forums has been vitally important, but in my view the analysis of psychological studies has been done to death. They’re useless studies, end of story. How many more psychogenic and CBT studies do patients need to analyze and bicker over when that energy and anger can be spent calling the NIH or the CDC on the carpet for funding them? Look what’s happening in Egypt this week. Actions speak louder than words.
ReplyDeleteThe analysis of CBT and psychological studies is not going to bring in funding for good studies. And until ME/CFS patients get that funding, patients won’t get effective therapies. After nearly three decades of useless treatments and mostly pathetic studies, shouldn’t funding good research and finding effective treatments be the priorities? Otherwise this ME/CFS play of inaction is just going to continue, with patients cast in the role of Hamlet.
The effort to understand study construction is a worthwhile use of time and energy because it puts one in a position to rebut nonsense. But I hear you on your call to action and appreciate it. I think you got some things rolling.
ReplyDeleteWell then I have to say Mindy, you are mistaken. You are clearly not aware of the level of flaws in the edifice of psychogenic explanations if you think critique of these have been 'done to death', and you are therefore in effect arguing from ignorance. I think your pronouncements on this, in the circumstances, are misguided in the extreme.
ReplyDeleteWe need action on all fronts. Without understanding, how can there be hard-hitting accurate advocacy. The comparison with the AIDS situation is flawed - those guys died fast, we don't. Unless a bunch of us did exactly that somewhere public (I've thought about it).
ReplyDeleteBull has to be countered wherever it is found - and that includes the disability hearing and the family meeting. Without clear rebuttals of what's trying to be foisted (again) on us, we are minus the weapons to deal
Gerwyn has asked me to post his critique of the study Nancy Klimas was recently involved in here. His comments have been posted on Retrovirology and PLoSone, in comments on the relevant papers x 4. So we don't just talk among ourselves. Many of us are in conversation with the people that have the power. Don't please belittle that - we need all of us to do whatever we can do, whatever fits easy in the ME from the sofa life.
YES, YES, YES!!!!!
ReplyDeleteThank you Mindy!!
btw- it would be so helpful if you could post the contact info from leelaplay's comment above plus links to the appropriate congressional committees and a "find your member of congress" search engine. If you want me to dig up info to post on the last two, please let me know.
So here is the link to the critique of the Lopez Klimas study, as promised - I post a link rather than the whole article as formatting and length are a problem here
ReplyDeletehttp://www.mecfsforums.com/index.php/topic,5221.0.html
I agree with Tom and others that both critique and direct advocacy are important. I certainly agree with Mindy that CONGRESS (and the agencies) need to be bludgeoned over the head with our demands or things will continue on as always. So please, everyone, email the powers that be.
ReplyDeletefwiw- i think the highest priorities in US advocacy are:
#1- trash the invalid Reeves definition and adopt CCC (if a valid definition is used psych studies won't be such a problem because the will be accurate)
#2- get a good person to lead CDC's "CFS" program
#3- massive funding increase
When psychiatrists start declining funding for studies into CFS because they understand how DESPERATELY this money ought to go for biomedical research, then I will start to believe they really do mean well.
ReplyDeleteUntil that time, their knowledge of that desperately-ill patients are falling into a black hole of no-real-treatments means they are violating the Hippocratic Oath by doing harm.
Indirect harm is still harm.
Assuaging their guilt by prescribing paltry palliatives does not get them off the hook for what they do.
One who knowingly receives stolen goods is still liable for his actions, just as if he were the thief himself.
I sure do see the benefits of multilevel action to promote ME awareness and the point Mindy makes about HIV/AIDS advocay is a good one. The ME debate has to be made public broadly along side other measures in my view. I am invlolved in mental health advocacy for youth with severe mental disorders, and the key problem in the field is that advocacy is largely internal. Mental health agencies preach to the choir and offer mostly support to cope with medical and social dimensions of brain disease. Patients and families sit on government comittees (I am one of them), which is critical to transform policy, but sadly there is no coordinated attempt by non-profit groups and government to launch mass public educational campaigns to promote access to care, workplace and education equity laws, create affordable housing, access to medications, adequate disability benefits, etc,. Mobalizing the public would go a long way to helping patient and family advocacy efforts to achieve basic access to citizenship and dignity. As it stands, reform moves at a snails pace and policy and laws are outdated by a century, which is deplorable. Youth and familes coping with mental disorders suffer the fallout of neglect, which is in part due to lack of public support and political will.
ReplyDeleteThe key thing is everyone is working hard in mental health care to foster change. This does not negate the importance of finding ways to lobby government's who hold power and the purse strings to fund research, best-practise medical treatment, anti-discrimination educational campaigns and legal reform. In my experience public pressure is a key elementt to mobalizing change, which is what we are seeing in Egypt right now. The things is, how do you accomplish this for ME, since people like me are sick and broke from coping with ME and otehr illnesses posssibly casued by XMRV in the familiy for over a decade.
Thank you everyone for your role in ushering in ME reform. I apprectie every effort to help me as I fight poltical battles for my family. Let's all keep at it using a multi-level strategy.
I agree with Mindy. Patients analyzing studies and outbound activism aren't mutually exclusive things. They are both helpful.
ReplyDeleteI read the forums. They are helpful at times. But with a with a few notable exceptions, most of that analysis (and frustration) just bounces around them like an echo chamber. If all of that energy, anger, and analysis doesn't translate into coordinated and focused action directed at people who have power to change things, it only takes us half way.
Look at the situation now. We have two main web forums, and people in them they spend a lot of time fighting with each other. People can have reasonable differences, but think about if all of that energy could be channeled into real outbound activism demanding quality biomedical research?
We have how many "patient groups" who are supposed to represent us? They all have (for the most part) run campaigns at times, but it would be much more effective if the effort was coordinated.
I have been surprised that more coordination of activism hasn't been done by the WPI itself. I know the research takes precedence. But they are the main entity that patients trust at this point. Perhaps they could hire an activism coordinator?
Bottom line. We all want quality biomedical research into the cause and cure of ME/CFS. We *need* to speak as one voice to accomplish this common goal.
Patients are not dissecting every psych paper that comes out. This paper was given a thorough look because Nancy Klimas was an author. She is on the CFSAC, the SEP panel that approves grants, and was a guest member of the BPAC. In these roles, she has political influence and her position on issues like CBT and XMRV matter. What she publishes matters.
ReplyDeleteIt turns out that this paper is significant and it was important to draw attention to it. If those patients hadn't been so "passionate", Nancy Klimas would never posted that statement, where we learned that the paper was intended not only to advance the science, but to make a political statement in the U.K. as well.
I also have to call bull on the claim that some people's energy would be better spent sending emails and faxing. There are few in our community that can not only understand the science, but are able to place it into the political context that is so intricately entwined in this illness. These folks fill a valuable and specialized role in our community and we would be ill-served if they would stop what they're doing.
Encouraging people to email and fax is a great idea, but it wasn't necessary to bring this issue into it. They are unrelated.
Even if there were no more psychological studies at all, ever, across the whole world, that does not mean that there would automatically be an increase in biomedical studies, which is what we really want in the first place. Analysis is great but don't lose focus- even if you disproved every single psychobabble explanation for ME/CFS in existance, that doesn't mean you've moved one inch closer to proving what ME/CFS actually is. Disproving psychobabble won't make us any better and what's more the only way the psychobabble will truly be disproved is to prove what the biomedical cause is. More biomedical studies, please!
ReplyDelete"These folks fill a valuable and specialized role in our community and we would be ill-served if they would stop what they're doing."
ReplyDeleteNobody is saying those people should stop analyzing the studies. What they are saying is there is a lot of energy and interest now because of the XMRV finding. And that our activism efforts would be more effective if it was coordinated so we could have a unified voice in speaking truth to power.
As it stands now, the ME/CFS activism groups are very fragmented and they come across that way, diluting the message.
I'd like to see an immediate increase to the ME/CFS budget to equitable levels. The UK increased theirs last night. Allocated to find causes of ME/CFS.
ReplyDeletePerhaps since we are not making a quilt as the Aids activist did, we should all take a picture of ourselves, either in bed, on the couch, in our chair, what ever you are doing and have it mailed to our political members with M.E. information and the need for biomedical research information.
ReplyDeleteXMRV+ Survey wrote:
ReplyDelete"Patients are not dissecting every psych paper that comes out. This paper was given a thorough look because Nancy Klimas was an author. She is on the CFSAC, the SEP panel that approves grants, and was a guest member of the BPAC. In these roles, she has political influence and her position on issues like CBT and XMRV matter. What she publishes matters."
Absolutely - and analysis and critiques of any research should not be seen, either, as a personal attack on a published paper's author or co-authors. As XMRV+ Survey says, Nancy Klimas attends CFSAC meetings as an advocate for patients. As a representative, there is therefore an expectation of accountability for any research projects in which Dr Klimas involves herself and for which she has accepted funding.
And this study was NIH funded - public $$$$ being spent. How that money has been spent warrants scrutiny.
I'm wondering whether this editorial perhaps says rather more about a desire to divert attention away from Dr Klimas's involvement in this study and the criticism that has followed the paper's publication than a call for the time and energy of patients to be redirected into bombarding agencies with emails, faxes and phone calls, to show government that patients are "as mad as hell". Isn't that what they already think, anyway?
Just to add to something I said above.
ReplyDeleteI wonder could a call for no more psychological studies in the US cause problems. For example, at the moment, the IACFS/ME has been supportive of, say, challenging the CDC and its program, with some hard-hitting statements. But some might turn against the patients if patients say there should be no more psychological studies.
As I said, I think the problem has been more with studies outside the US e.g. in the UK and the Netherlands. There is much more hype from there e.g. that GET or GET-based CBT can cure CFS.
As far as deciphering all the levels of psychogenic screwing, Angela, here’s my analogy: you find out your spouse is cheating on you. Do you really need to know all the intimate details of the situation or do you hire a great divorce lawyer and get away from the jerk? I’m arguing for the latter, and in my view those who want to continue to dissect the CBT/psychogenic studies are arguing for the former. Everyone is entitled to his or her opinion.
ReplyDeleteThis is my blog, and I'm giving my opinions. In my view, many patients with ME/CFS are running out of time and some have already died, including one of my best friends. As I’ve said before, HIV/AIDS patients changed things by confronting the government. Spending countess hours debating the minutiae of these psychogenic studies is at this point, to me, a waste of energy because most people don’t have the energy to debate among themselves and confront the government.
It has nothing to do with Dr. Nancy Klimas being an author of the study, MEagenda. If you read the post on the Q and A with the corresponding author of that study from earlier this week, you will see that I asked pointed questions about what I believe are the weaknesses in that study.
What I believe, bottom line, is that any CBT, psychological, and personality-disorder study is a waste of money and hurts the cause because it drills into readers the enormous lie that ME/CFS is a benign malady, where in fact it's a devastating disease, rivaling endstage heart disease and endstage HIV/AIDS.
These psychogenic studies are also taking away from dollars that should be spent on biomedical research into ME/CFS.
That to me is the takeaway from these studies. That’s it.
A huge campaign begun the day that study came out directed at the NIH, CDC, Congress and to the study authors that said: “No more ME/CFS psychological studies. Support more biomedical research for ME/CFS.” would have done more good, in my view. That to me is the bottom line: What will do the most good. Patients have talked this through for 25 years. I believe it's time for organized, unrelenting action, just like the ACT-UP HIV/AIDS patients began more than 20 years ago.
It’s been 482 days since the XMRV Science paper was published, and nothing has changed. The government has to understand that ME/CFS patients are united and won’t back down. Only then, in my view, will they will give patients what they want and deserve. I believe that until patients become organized, eyes-on-the-prize warriors, nothing will change. Nothing.
The bickering that this post has drawn is exactly what I don’t want to engage in, because again it does not bring about better research and better treatments. I’m choosing not to devote any more time to discussing and dissecting the post.
And the band plays on! A line from the Prologue in that book reads: "It's a tale that bears telling, so that it will never happen again, to any people, anywhere". Well, it's been happening to us, for 25 years with minimal change in Gov policy on this disease.
ReplyDeleteI'm full on board with you on this Mindy. We (doctors, researchers, journalists, patients)have been pounding the doors of every agency involved for over 2 decades and we continue to be sent away sick. I don't see this changing without greater and more sustained confrontation.
Tom,
ReplyDeleteAIDS activist Larry Kramer always said that the greatest impediment to change was: "We're all anxious to have everyone love us." His advice was to confront the system and take no prisoners. He also said: "You have to be the enemy and get behind enemy lines. They've got to be frightened of you."
Here's a link to an interview with Kramer back in 2003, where he articulated those sentiments:
http://www.news.harvard.edu/gazette/2003/10.02/15-kramer.html
"Kramer's brand of activism trades politeness and diplomatic savvy - qualities arguably embraced by many in the audience - for shock value and confrontation.
ReplyDelete"You do not get more with honey than with vinegar. You get it by being harsh and demanding and in-your-face - constantly," he said. "We're all anxious to have everyone love us. It's difficult to maintain that if you have strong opinions."
-----------------------
A bunch of us rose to challenge Dr James Jones at Lakeside Hospital in June '86, when he tried to tell residents of Incline Village with the "Tahoe flu" that we had brought this illness of "CEBV syndrome" upon ourselves by poor lifestyle choices, drugs and alcohol abuse.
The gal next to me tried to stop the ruckus by saying those exact words, that you "catch more flies with honey..." and all we were going to do was make him mad at us... and then he wouldn't help.
I replied, "He's already made up his mind about our illness. We have nothing to lose by making him angry".
But in the interests of preserving peace, we sat down and shut up.
That was June of '86.
Guess we saw how the "honey" scenario worked out, didn't we?
I guess we have all heard by now about Myra Mclure's appointment. So what, the public display in the ME community by the U.S government was all political posturing and we are now learning they really support psycholgical causes for ME like in the U.K?? I have never seen such a transparent bunch of politics in my life...except maybe Sarah Palin's quick entry into politics during the Obama campign to try and win the female vote. If ever there was a time for coordinated targeted advocacy the time is now. Mcclure's appointment is an insult to patients and makes a mockery of both science and politics.
ReplyDeleteIn the early 1990's I was on Ampligen, and it helped me tremendously. During the 18 months that I was on the drug, I regained my mental and physical abilities: I went from being house-bound to being able to ski, and anticipated returning to work-and then the drug company cut me off. My health deteriorated, and I became mostly house-bound again.
ReplyDeleteFor 20 years I've waited for the FDA to approve Ampligen for ME/CFS. In December 2009, the FDA denied Ampligen's approval and said there wasn't conclusive evidence of its effectiveness. Well shit, most of the people I know that were on it were doing very much better. I came to realize the real reason it wasn't approved is that it's a very expensive IV anti-viral drug used to treat an illness considered by psychiatric researchers to be perpetuated by maladaptive thoughts. The FDA is sure to receive severe criticism for approving Ampligen for that application. Why would they want that grief?
Now I'm 60, and decades have gone by in a blur while I've been living a very limited life with this illness. I have no time left to debate the psychobabblers' research. It's time to act.
What I want the government to understand is that research money for CFS is totally insufficient as it is, and that any psychological study takes time and money away from biomedical research that could lead to effective treatments for ME/CFS. If the NIH doesn't fund real and extensive biomedical research now to find an effective treatment soon, I'm likely going to be too old and damaged to ever again have a decent quality of life.
We've talked about the crappy research for 25 years and where has that gotten us? I believe Mindy is right, and we need to unite and let the government agencies know that enough is enough. Time goes by faster than you can imagine, and if we keep talking instead of acting you too may have no treatments when you're my age.
I admire NK but don't expect to be "jazzed" by any PNI. I might understand why she backed Antoni's study, preferring to fight "science" with science. For the sake of her GWI and ME patients as well as herself, she's had to respect the power of Reeves, the Brit bunch, and their backers in the military and insurance industries.
ReplyDeleteWhether this kind rebuttal to White was worth it: we don't have forever, there's only one NK and so much she can accomplish. As for Antoni and the like, no, they may not be demonic, but their goals are too limited (how to lie alone with a phone and die slower).
As patients, but for being exhausted and broke, we're in the far better position to fight with fire while others do the science. But we have to be careful to speak on behalf of ourselves and not set up apparent conflicts of interest.
And so far as making people "afraid," those people are NIH/NCI/CDC. Writing them only does so much unless you jam their T1 lines. We're going to have to engage Congress and the OMB, and the CSR has given us even more reason to do it: the people now in charge are screwing us as much as their predecessors. There must be a way of making people understand that bedridden kids lying in darkness don't need a dentist.
I think you are setting up those of us who HAVE been critiquing psychogenic explanations in a false dichotomy to other advocates (and your cheating husband scenario here is just plain inaccurate and another false dichotomy), and whether this is your blog or not, you've made comments which constitute 'friendly fire' to us, so I certainly have a right to rebut.
ReplyDeleteHere are the reasons you have got this issue wrong:
Firstly, we have all taken part in countless other advocacy initiatives: we're not sitting there chatting and being all intellectual while you (or others) do the hardball advocacy work. I have 8 years plus of active advocacy that has seen me go up against key adversaries of the community. I also notice that you've managed to imply that those of us CRITIQUING psychological studies are somehow ENGAGING in them, which is just plain incorrect. Secondly, those of us critically analysing the 'psychobabble' have brought a lot of important knowledge to this community, knowledge that counts as weapons of empowerment, in many ways, both individually and collectively. Thirdly, it is not enough to merely shout 'no more psychobabble'. This edifice is entrenched in society at large, in the government and medical establishments. Even apparent 'allies' like Klimas et al do not seem to be in a position to raise the legitimate objections that could and SHOULD be raised to the poor science informed by psychobabble. Us shouting without that knowledge and reason makes us look just silly. But where do you think that knowledge comes from? From the work us advocates do! Fourthly, psychogenic explanations are goalposts that are constantly shifting in various ways, as certain advocates have already discussed on the forums in response to your comments, and as the upcoming ICD-/DSM shifts demonstrate. Fiftly, you are in danger of being an advocate of philistinism and anti-intellectualism here: because you personally cannot understand how important this knowledge is, you've dismissed it. That's shcoked me.
Without clear argument as to WHY they are wrong- we can never mount a clear defence against the elephant in the room: the psychiatric paradigm of ME/CFS and other illnesses. If you didn't want 'bickering' (your word for people objecting to your comment), you should not have set certain people up in false opposition to others.
No question you do important work, Angela, but as far as the other points, I'm going to agree to disagree.
ReplyDeleteAll psychobabble studies have no direct bearing on "CFS" unless psychiatrists can demonstrate efficacy of their treatments in restoring NK cell function, reducing viral load, eradicating dysregulated autonomic function and removing giant refractory damaged-B cells from the blood.
ReplyDelete(Among other things)
"And HOW do you feel about your perceived-illness NOW"... doesn't cut it, as a basis for their misguided interference in a serious and disabling physiological disease.
Fight the targets, not each other.
ReplyDeleteI support a priority for biomedical research using CCC, which should at least help to weaken the psychobabble. Some comments above have implied that the psychobabble can be ignored because it is irrelevant as we focus on a biomedical approach.
ReplyDeleteHowever, it cannot be ignored safely because in practice, psychobabbling researchers and authorities and "mindbody experts" don't interpret those biological abnormalities that Erik Johnson mentioned as confirmation for organic pathology in ME/CFS. To them these are either unproven, limited to a minority in the ocean of heterogeneity, or a "functional" reflection of cognitive behavioural factors in the delayed convalescence.
Psychobabble and biomedical research are not mutually exclusive either, the latter alone won't necessarily stop the former. Medicine already has a long history of psychobabble, even for organic diseases, still in the 21st century. Not to mention that the DSM-5 is heading towards expanding its influence into classic organic diseases too.
It has been reported that psychological factors can influence the subjective experience and coping style of people with organic disease processes, with possible feedback into the disease from "stress" and bad habits etc. This will be one of the biopsychosocialists' goalpost-adjusted responses to future organic pathology in ME/CFS, along with further speculations involving psycho-neuro-endocrine-immunology to justify previously assumed psycho>somatic mechanisms.
Wessely has already indicated that XMRV cannot explain the psychological research findings and that he wouldn't do anything about a virus even if found because he "is in the business of rehabilitation". Don't forget that CBT/GET is currently promoted under the guise of pragmatism, so is likely to remain pushed on us regardless of biomedical research findings and treatments, as a practical intervention to help reduce complaints and increase activity, because of its (dubious) evidence base. Analyses have exposed this "evidence base" as severely flawed.
Due credit to Wessely though for acknowledging that future generations "may laugh at his puny approach to CFS" (his words on the BMJ podcast, not mine). People are already laughing (and crying) over his approach. Others consider the cognitive behavioural approach to CFS as a form of abuse. Simply ignoring the psychobabble would be like a schoolyard victim "ignoring" the bully's punches because a stronger ally is on the horizon.
So I agree with jace, "we need action on all fronts" and "bull has to be countered wherever it is found". Without such analyses, the community could only say anecdotally that [insert psychological study here] sounds like bollocks, but they couldn't explain why.
Also, some of us are better qualified for different aspects of advocacy. I enjoy Angela Kennedy's analyses on the flaws in psychogenic explanations, I would not encourage her to stop.
Brilliant! A home-run into orbit!
ReplyDeleteDear Mindy, please keep up these concise and clarion editorials --they are very well articulated and the point is a extremely important one—one that if not understood in a timely fashion by the "research community"( especially federal scientists )—will be life or death for some of us.
The fact that we need more money spent on biomedical research (a lot more) in total does not invalidate the fact that our governments ( U.S. & UK ) are spending an ungodly proportion of what they've allocated at the present moment on studies which are essentially meaningless in terms of understanding pathology and reaching a cure.
(And in the long run the psychological studies are detrimental: as they have a tendency to self-perpetuate at the expense of other types...)
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To use an analogy... Suppose our bright folk in the NASA Shuttle Program suddenly went mad and decided to spend all of their money on upholstery for a new space shuttle!
That shuttle is not gonna fly that way....
If they are even more wrongheaded ( say, about as wrong headed as these CBT studies ...) when one mentioned how wildly illogical such a decision is, they might say... "well upholstery is an important and integral part to the shuttle...". They might add their congressional funding is less than they were hoping.
However they would still be derelict in their duties—and even more derelict as there is less funding( and in that case a larger percentage of funding should be used on the "essentials"...).
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The problem with these CBT studies is they are in effect doing just this: spending a massively disproportionate amount of money on what is a small part of the whole and which is ( at best ) only bells and whistles and upholstery! If you spend your entire shuttle budget on upholstery you may have a nice looking cabin, and maybe some fashionable colors, but good luck getting into space...
We need the essentials: biomedical—e.g. pathological, immunological, genetic, epidemiological—studies.
Now. Sooner than now if possible :).
Perhaps, instead of analyzing their studies, we should be analyzing THEM!
ReplyDelete--------------------------
“Epidemic of Mental Illness in Doctors"
The emergence of Medically Unexplained Illnesses has revealed an epidemic of behavioral problems and personality disorders in doctors.
Patients expressing unfamiliar complaints to their physicians often induce the “It’s All In Your Head” (AIYH) or the “That’s Impossible” response in doctors suffering from these behavioral problems and personality disorders.
Physicians fixated upon the metaphysical belief system of “If we don’t know about it, then it doesn’t exist” are suffering from a mental defect or psychological condition known as “Doctors with Unexplained Medical Beliefs”: D.U.M.B.
DUMB doctors are comprised of subgroups characterized by opportunists who are feigning to be DUMB for monetary gain: “Medicalingering” or of those doctors who are not in possession of sufficient information to render an intelligent diagnosis: “Factlessitious Disorder”.
Physicians who are suffering from DUMB disorder place an inordinate emphasis on theories of psychological causality for virtually any unfamiliar complaints that are presented, and manifest a distinctive lack of observational skills when confronted with obvious abnormalities.
Doctors who exhibit obsessive preoccupation with psychosocial etiologies should be regarded with extreme caution:
“Psychosomatization Fixation Disorder” or “Psychologizing” is a distinctive characteristic of mental illness, and should be considered a warning sign that the individual is not rational and may in fact be dangerously DUMB.
DUMB disorder may be concomitant but should not be confused with Signs of Thoroughly Unmistakable Physician Intelligence Deficiency: “S.T.U.P.I.D.”, as a STUPID physician is uniformly incompetent, while a DUMB doctor is only mentally paralyzed into “psychologizing” by unfamiliar symptoms and complaints.
An immediate investigation is warranted to assess the prevalence of DUMB and STUPID doctors, and to determine the detrimental impact that physicians suffering from these mental defects are having on their patients and the health care system.
-Erik Johnson
Incline Village CFS survivor”
Thank goodness for the precious few doctors who admit they don't have all the answers, trust their instincts and the symptoms they observe in patients. I am grateful to have a GP who recognizes that she doesn't hold the last word on disease becasue the human body is so complex. While this has not lead to effective treatment, it has led to compassion and a 'do no harm' approach in my care. My GP investigates my health and treats what she can promptly based on the theory that removing layers of untreated illness is bound to improve my underlying condition.
ReplyDeleteI have been to the other type of physicains mentioned on this blog. My oncologist looked at me blankly and ignored my effort to let her know about XMRV research and its possible link to cervical cancer last month. I don't think I recovered from her disinterest yet.
I am going to my GP in a few days because I am having a relapse of ME. I am grateful I will be met with compassion when I go, but after fifteen years I need treatment. My GP will administer treatment for ME as soon as XMRV research leads to clinical protocols, so let's keep focused fighting for powers to take ME seriously. I see my life fading away in real time and I refuse sit to watch it.