CAA is Listening

[gracenote]

Coping strategies are not treatments. Kurt

Thank you. I like it.

 

[Gerwyn]

the trouble is that is not what the CAA said.They also said CBT was a treatment that alievated symptoms of ME/cfs it doesnt

 

[jspotila]

Kurt said:

Yes, CAA has not yet solved CFS, and maybe not dramatically changed the public perception of CFS. But also I am not certain anyone can accomplish either of those goals at this point. Maybe the question we should be asking is exactly how any group can make a real difference in CFS. What are the barriers to our progress? I would love to see a professional assessment of our image and how to make a change, who does that type of analysis?

Very expensive consultants that the Association cannot afford to hire! Part of what you are talking about is market research - very expensive. I know because we looked. There are also prominent consulting firms that specialize in non-profit work. Very expensive. The Association tries to leverage informal connections to get free input and expertise. The CDC-funded public awareness campaign is the largest campaign ever conducted for CFS, and it was bare bones. A few million dollars is big money in the CFS community, but it is nothing in the real world of awareness campaigns or provider education.

 

[Dr. Yes]

Yes, CAA has not yet solved CFS, and maybe not dramatically changed the public perception of CFS. But also I am not certain anyone can accomplish either of those goals at this point. Maybe the question we should be asking is exactly how any group can make a real difference in CFS. What are the barriers to our progress? I would love to see a professional assessment of our image and how to make a change, who does that type of analysis?

Changing the public perception is not as important.. changing the medical and governmental perceptions is far more important. That is the only way to change how we are treated by doctors and insurers (and the government, i.e. disability, Medicare, Medicaid, housing policy..). The barriers to this progress are the economic interest of insurers (incl. the government) to deny expensive coverage to all of us (don't forget more extensive workups for all those suspected of having CFS) -- that's the biggest barrier -- and entrenched dogma in the medical establishment, esp. as disseminated by medical schools. The anti-ME psychiatric lobby is powerful, but is supported and encouraged to a large degree by the insurers. Why do you think CBT is so heavily favored in the UK (and, to a lesser extent, here in the US) when psychologists and psychiatrists could make far more in more traditional therapy or counseling? It is because CBT is short and therefore cheap ; read the analyses of it intended for government or insurance companies and you note again and again the bottom line that it is "cost effective", "very few sessions", "gives the patient responsibility for recovery". Plus the active discouragement of patients and their doctors from seeking additional testing -- who other than insurers would possibly benefit from that?

This is ultimately a battle over money more than anything else. Remove the factor of insurers' vested interests and coverage issues will disappear; also money will finally be allowed to flow more normally into unbiased research, and the medical dogma problems will eventually resolve themselves.

How to remove the vested interests of insurers from the equation is something I do not have an answer to right now, but recognizing the major obstacle is the first step.

:worried: Okay gotta go before some folks who ordered me to rest today spot me!

 

[kurt]

Changing the public perception is not as important.. changing the medical and governmental perceptions is far more important. That is the only way to change how we are treated by doctors and insurers (and the government, i.e. disability, Medicare, Medicaid, housing policy..). The barriers to this progress are the economic interest of insurers (incl. the government) to deny expensive coverage to all of us (don't forget more extensive workups for all those suspected of having CFS) -- that's the biggest barrier -- and entrenched dogma in the medical establishment, esp. as disseminated by medical schools.

I think that is an over-simplification. The public perception can definitely influence the medical and governmental, and the media can play all three. As Jennie just pointed out (and I agree), figuring this out is not simple, and market researchers and image consultants are not cheap, but we really, really need that.

Personally I see the strongest medical PR coming from the entertainment media, just look at all the positive (and often false) messages in popular medical TV dramas.

The anti-ME psychiatric lobby is powerful, but is supported and encouraged to a large degree by the insurers. Why do you think CBT is so heavily favored in the UK (and, to a lesser extent, here in the US) when psychologists and psychiatrists could make far more in more traditional therapy or counseling? It is because CBT is short and therefore cheap ; read the analyses of it intended for government or insurance companies and you note again and again the bottom line that it is "cost effective", "very few sessions", "gives the patient responsibility for recovery". Plus the active discouragement of patients and their doctors from seeking additional testing -- who other than insurers would possibly benefit from that?

This is ultimately a battle over money more than anything else. Remove the factor of insurers' vested interests and coverage issues will disappear; also money will be finally be allowed to flow more normally into unbiased research, and the medical dogma problems will eventually resolve themselves.

How to remove the vested interests of insurers from the equation is something I do not have an answer to right now, but recognizing the major obstacle is the first step.

:worried: Okay gotta go before some folks who ordered me to rest today spot me!

I think you are partly right, but again, it is much more complicated than just an insurance coverage lobby. For one thing, there ARE no standardized and accepted medical treatments available for CFS, if there were we could be lobbying for coverage. I worked in the health insurance industry for a few years (long time ago), and they have enough money to cover treatments for something like CFS, after all some of them will cover $200,000 cancer or heart transplant treatments. The problem is that they don't like throwing money away so yes, will only pay for cheap treatments for something with no real treatment options, they don't like experimental therapies, chiropractic, things they do not believe make a difference. I think they know that CBT is unlikely to fix CFS, but what else could they pay for? Expensive diagnostics maybe but there are not proven pathways from diagnostics to successful treatment. So they would be wasting their money. Remember that most health insurance in the US is employment-based, so they favor therapies that will return an employee to work. There are no such proven options for CFS so they stick with cheap palliative therapies, at the cost level of something like chiropractic, and CBT fits in that category. If Ampligen had been approved for CFS, and was proven to actually return people to work, some insurance companies probably would cover that, up to a certain point.

Anyway, I don't think addressing the insurance lobby is going to solve our CFS image problem. Our bad image has to be attacked directly and head-on with the intelligence required for that type of problem situation. We would probably need the very best PR/market research/image consultants to solve this. And mega-dollars to pay for the PR campaign.

 

[Stuart]

The MedscapeCME is not that 'new' nor is it that different from any of the literature found that we have voiced our complaints about, this was reviewed in other posts on other threads, but I see it being rehashed as 'evidence' of some change. I long ago went screen by screen and pasted it all in a document, both I and my physician did not find it useful, just busy work exercise.

You can't advocate and be neutral as to the value of things, studies are qualitatively different, the number of studies is meaningless as well. You don't do analysis by averaging bad data. You can be nonthreatening to people and institutions by being wishy washy, by contracting projects from entities who have already shown their cards and playing along.

Even if you discount the stories of damage by patients who take this history as part of the cause, you should understand how they are moving toward other actors who have taken a better stand than to regurgitate bad data and to have an opinion based upon an average of bad data.

 

[Robin]

I think that is an over-simplification...

The public perception can definitely influence the medical and governmental

The public can influence the government in matters like funding, but I seriously doubt that public lobby can influence medical policy. I know the lyme lobby was successful in MA protecting doctors who treat chronic lyme disease with antibiotics, but, they can't, for example, dictate what test the FDA approves for lyme disease. That has to come from research. The autism/vaccine lobby get ethylmercury bumped from childhood vaccines and initiated a flurry of research about vaccine safety, but, they haven't been able to budge policy on childhood vaccination schedules. Again, that has to come from peer reviewed research.

Do you know of any other examples?

The only way the public can influence medical policy is to fund compelling and scientifically strong private research. The WPI is a great example of that. Their study initiated work at HHS.

Personally I see the strongest medical PR coming from the entertainment media, just look at all the positive (and often false) messages in popular medical TV dramas.

??

I don't think having a special ME/CFS episode of House, or ER is going to influence doctors, researchers, or the powers that be. My best friend is a doctor, my brother in law is one too. They literally roll their eyes at these types of shows.

I think Dr. Yes is right. Don't forget that insurance is not just about medical payouts for tests and pharmaceuticals, it's about long term custodial care and private disability insurance. Some of the members on this board are going through the hoops right now.

Consider that the SSA pays out in the neighborhood of $1.5 billion in disability payments for CFS, while we get less then $10 million yearly in federally funded research? It makes no sense. There's medical political bias, and I'm going to speculate that there's surely some nefarious lobbying by insurers going on too.

The only way to sort this out, again, is strong evidence based studies showing biological impairment in CFS, that's what doctors and researchers care about -- not television medical dramas!!

While I am horrified that Peter "CFS patients are the least deserving" White was quoted in the CAA literature, the research program actually has potential to influence how CFS is viewed medically. That's a much better use of funds than PR consultants.

 

[justinreilly]

Attacked on all Sides by Vicious Dingbats

But somehow, Cort, the message isn't getting out there where it's needed — that's one of the things you're saying in your article about emergency rooms. How do we change the message that is being heard? We can go back and forth forever about what is being said and being done by the CAA and get nowhere.

I think we all agree that what is being heard by the general public, and most importantly by doctors and healthcare practitioners, is not adequate. How do we change that? Who is in a position to change that?

I'm suggesting that our patient organization, the CAA, is the only organization that is in a position to change the public perception about ME/CFS, and that for whatever reason (and let's not keep arguing about this), they have not adequately represented us. Even you say they can do better. Can we put our heads together and come up with what can be done differently so that we change what is being heard, not just by us as patients, but by the community at large? At some point it no longer matters what is being said and being done, what matters is what is being communicated.

Does your emergency room doctor know what ME/CFS is? Can you trust that if you have to go, that there will be someone present who can advocate for you? And if not, can you tell them where they can get excellent information so that they can treat you and not harm you? Quick — this is an emergency.

Help!

Exactly! Thank you gracenote. I have been to the emergency room and it didn't seem they took the ME thing seriously. I don't think my dentist takes it seriously when I say I don't think I can handle anethesia because of ME and he says it's not a problem and it takes me a week practically in bed to recover to my usual state of ill health. We've all experienced this type of idiocy and i think we are all scared to go into that ER when something does go really wrong because we'll be cooked like Mike Dessin.

Mike's story is powerful and important and thanks Cort for highlighting it. I had my Mom, once a disbeliever, to watch his CFSAC testimony and it had an impact on her.

To paraphrase Hunter Thompson: We are attacked on all sides by vicious dingbats. There are decades-long PR campaigns to defame and marginalize us by the usual suspects. Responding to this must be our first priority and this is not done effectively by repeating their lies and manipulations uncritically.

 

[Stuart]

The only way to sort this out, again, is strong evidence based studies showing biological impairment in CFS, that's what doctors and researchers care about .

On the PR issue are we to believe that the "Faces" campaign was done cheap? If this is the PR we get I am not stepping up to fund a "mega-dollar" PR consultant or campaign. I have seen better work from colleges students doing internships or work study.

The research is what has gotten attention, Robin was spot on.

 

[justinreilly]

Because: (1) the graded exercise/activity component of most popular regimes ignores physiological reality and (2) the false illness belief ideology central to most models of CBT has so deeply embedded the belief in the clinical (and econo-medical) consciousness that most of us are less sick than we 'think' we are, that no amount of Klimases and the like will be able to rehabilitate the concept... leading to continued abuse and neglect of a majority of PWC by their government and private institutions as well as by their doctors and families. For CBT, justly or unjustly, is the major entry point for the psychosomatic school of 'thought' into the redefinition of our illness, and that is a reality and a danger you (and we all) must face.


Yes, Yes, Yes Dr, Yes:

CBT/GET were the first things suggested to me when i became ill 6+ years ago...here in SF...these approaches were suggested to me by Dr's at UCSF, CPMC, Stanford, UC Irvine, UCLA and even lil ol' Alta Bates...yes I went everywhere trying to find out why I no longer had an ounce of energy, couldn't stand for more than 5 mins, had SOB, anxiety, heart palps, all over bady pain...etc...this after 38 years of a highly active, healthy life. Each and everyone of these first 50 or so docs said i must be depressed and need to start moving around some more.

Wow, how did i suddenly become depressed for the first time in my life and it completely disabled me physically...that's the CRAZY part and how could i move around more when I could barely walk to the bathroom unassisted!?!?!? But the more I protested this diagnosis and treatment plan the more they considered me depressed, unwilling to try, combative (weakly but still) and in denial.

This is WHY the CBT/GET treatment proposals are dangerous...I WAS and still am very physically sick and the first line treatment proposed to me over and over again were psychological and excercise.

Please do not defend this approach, it is EXTREMELY insulting and dangerous to those of us whose health has been stripped away.

I will NEVER forget when the infectious disease doc at CPMC, upon release from my 1st of 5 hospitalizations in so many months, told me I needed to go to Hawaii and relax!!!!!!!!!! I had in fact just returned from Hawaii where I had finally burned and crashed from this illness.

I was bewildered by how I was treated by the medical establishment...viewed as a crazy, depressed, skinny, almost 40, white woman w/an unexplainable disease...so we'll just tell her to go to therapy, exercise more and take some anti-depressants. And in my desperation, I did in fact try all of those things...but of course none of them helped...because that is not what is wrong with me....I am physically ill....and need to be treated as such!!!!!!

one last insult to injury...my family and friends (except my super fantastic husband) started beleiving all the things the dr's said....despite knowing me my whole life...why? because those were the options presented to them and they were raised to trust and believe in the mainstream medical system.

it's been a long difficult journey and i now know so much more about my illness, but it would have been nice if the docs i saw at the start of this saga were able to offer my better advice and treatment than cbt/get!!!!!!!:Retro mad:

Lisa,

This hits it right on the head. I'm sorry for what you had to go thru. I'd be shocked to hear your story, if it were not also my story and the story of most others. I really don't understand why any PwME or patient org would need the problems with British CBT, GET and related attitudes explained.

As Dr. Jones said in Osler's Web, ME has a unique presentation. He was amazed when he got a bunch of patients together back around 1984 and they all instantly recognized their disease in each other 'without any foreknowledge of their confreres.' It's also amazing that we can all relate to each other's horror stories, because it's also happened to us and our friends with ME. There is a systematic abuse of ME patients and it has to be tackled head on.

 

[kit]

I can in no way read this whole thread. . . but, yes! Doctor's need to know that GET can harm patients and the CAA has a responsibility to inform. I followed a GET regiment almost TWO years ago and have still not recovered to the level I was then. Yes, there have been other exacerbating factors, but it was the GET that worsened me so that became unable to work, and then the stress of becoming completely disabled and tumbling financially worsened me further. I've been in bed for most of two friggin years as a result of GET, which my doctor advised me to do. In any other circumstance, that kind of outcome from a medical treatment would be malpractice. If something can cause that much HARM, should it not come with a warning label? In big bold letters? Should not doctors KNOW that it can harm??? Warning: The Surgeon General has found GET to be potentially dangerous to your health. Only seek treatment from a certified GET practitioner.

 

[justinreilly]

Cort has 'Erroneous Illness Beliefs'

...until you understand what causes this disease... a dysregulation in the stress response is a candidate.

I agree. Stress, defined very broadly (all stress- physical, infectious, mental, chemical (toxins) etc.) is very hard on us; harder on us, it seems to me (please correct me if wrong), than in other serious diseases.

That said, I don't think it's very plausible that stress alone, even severe stress, can cause ME. There certainly has to be other factors- one or more retroviruses being prime candidates (in addition to genetic vulnerability).

Posted by Cort

..How many patients have objective evidence of an 'incurable neurological disease". Do UBO's constitute 'incurable neurological disease' No. Does grey matter atrophy? Obviously not after that CBT study. I think alot of us think this is a 'neurological' disorder but is there scientific evidence that conclusively states that's what it is? We still don't have enough research to say that.

I don't understand how you can make this comment. Of course it is, in part, a neurological disease. Yes, brain lesions (UBOs) on MRI, abnormal cognitively evoked EEGs (in 95% of PwME), abnormal cytokines, specific discrete cognitive dysfunction on neuropsch exams prove neurological disease. This is beyond cavil.

Even Wessely in that podcast admits that it is a 'brain disease.' Do I need to send you to him so he can set you straight on your 'erroneous illness beliefs'?

 

[Cort]

I honestly wish I'd never written that. That was in response to a statement suggesting that CFS is an incurable neurological disease. My point, which, I delivered very badly - and which has been truncated - is that CFS is not an 'anything'. It's not a 'neurological' or 'endocrine disease' or an 'immune disease'; its all of that.

I agree with this

Of course it is, in part, a neurological disease.

I'm not saying that neurological abnormalities have not been found. I would never say that. Some studies show reduced blood flows to the brain, reduced glucose levels, brain atrophy, UBO's, EEG's abnormal proteins in the spinal fluid, strange patterns on fMRI imaging...there's alot of evidence indicating neurological involvement.

That was not my point. I said we cannot say it is 'an incurable neurological disease'; a more accurate statement I would think would be that its a mostly incurable multisystemic disorder - not very exciting for sure - but I think that's where we're at.

It was kind of a technical point really regarding a sentence....

For sure I agree with this:

That said, I don't think it's very plausible that stress alone, even severe stress, can cause ME. There certainly has to be other factors- one or more retroviruses being prime candidates (in addition to genetic vulnerability).

To be picky I don't think stress causes CFS. I wasn't under an enormous amount of stress when I got it. I think that whatever happens when you get CFS that the stress system is effected; whether it be my a virus or something else. For me that's just abundantly clear; I'm sure that's not necessarily so for other people.

 

[Cort]

Is GET still so crazy that it asks you to push through your symptoms and your crashes? If so then it should be banned. I had thought that GET was more like - slowly, very slowly increase your activity levels - so long as you don;t flare up. I thought it had evolved into something more like PACING actually. That's clearly not what happened with Kit. Maybe I'm getting things mixed up.

 

[justinreilly]

I often haven't had the energy to get to the doctor's office let alone to argue with a doctor about my own experience of this disease and the CAA's recommendations once I get there. This is especially true in the ER where lives are on the line and moments can matter. How many patients have been dismissed from the ER only to die at home? I came very close to that on at least two occasions and at the time, no one in the health care world would have ever looked back.

Chilling.
Thanks CBS.

 

[justinreilly]

I honestly wish I'd never written that. That was in response to a statement suggesting that CFS is an incurable neurological disease. My point, which, I delivered very badly - and which has been truncated - is that CFS is not an 'anything'. It's not a 'neurological' or 'endocrine disease' or an 'immune disease'; its all of that.

I agree with this

I'm not saying that neurological abnormalities have not been found. I would never say that. Some studies show reduced blood flows to the brain, reduced glucose levels, brain atrophy, UBO's, EEG's abnormal proteins in the spinal fluid, strange patterns on fMRI imaging...there's alot of evidence indicating neurological involvement.

That was not my point. I said we cannot say it is 'an incurable neurological disease'; a more accurate statement I would think would be that its a mostly incurable multisystemic disorder - not very exciting for sure - but I think that's where we're at.

It was kind of a technical point really regarding a sentence....

For sure I agree with this:



To be picky I don't think stress causes CFS. I wasn't under an enormous amount of stress when I got it. I think that whatever happens when you get CFS that the stress system is effected; whether it be my a virus or something else. For me that's just abundantly clear; I'm sure that's not necessarily so for other people.

OK, we're on the same page here. And i do agree it is more accurately termed a multi-systemic disorder.

 

[CBS]

Why make things harder?

Is GET still so crazy that it asks you to push through your symptoms and your crashes? If so then it should be banned. I had thought that GET was more like - slowly, very slowly increase your activity levels - so long as you don;t flare up. I thought it had evolved into something more like PACING actually.

<snip>

* The above is my underline

This is where I think advocacy can go off the rails. Why keep recommending GET if what we really mean is pacing? Stop making things more difficult than needed. Stop asking your audience to appreciate a nuanced (confused) version of a loaded recommendation. Simpler, not more complex!

 

[Kati]

I would like to insert my experience of GET, at least what I thought was imposed to me via the occupational therapist. Even though they don't want to sound like it, they are focused on their own agenda, or perhaps the disability insurance's agenda. So as much as the OT was happy to let me walk 5 minutes a day the first week, I was expected to walk 8-10 minutes the week after that,regardless of my symptoms. And she didn't want to hear about my symptoms, because she was activity focused.

I told her that if I thought exercise would harm me, I wasn't willing to push myself through and do what she asked. Funny, I didn't hear from her in the last 2 weeks.

I'd say, until medical professionals are accustomed with what ME is, we will not have good services that answers our needs. And to get the professionals aware, there needs to be more research and education to all of them. Research, treatment, education. Do no harm. CBT and GET should be really really low in CAA's list. What we need is real treatments, evidence based. So please put the money on telling the government, funding research and supporting the research team that lead us the farthest so far, WPI.

 

[justinreilly]

Quote Originally Posted by Kurt
Coping strategies are not treatments.

<snip>

IMO, if CAA wants to talk about GET/CBT and related therapies, that information should be put in a section for coping strategies, with a very strong, bold-faced warning included. Certainly not even hint that they are treatments for CFS.

It seems so obvious but this needs to be front and center with all coping strategies. :victory:

Yup! this message must be 10 characters so i am typing.

 

[justinreilly]

Yes, CAA has not yet solved CFS, and maybe not dramatically changed the public perception of CFS. But also I am not certain anyone can accomplish either of those goals at this point. Maybe the question we should be asking is exactly how any group can make a real difference in CFS. What are the barriers to our progress? I would love to see a professional assessment of our image and how to make a change, who does that type of analysis?

I think CAA can make a big difference. As Jennie noted PR consultants are expensive. We really just need to start out with common-sense stuff that we've been pointing out here.