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A disease with two faces? Re-naming ME/CFS
Persuasion Smith covers the bases on the misleading and disreputable name for our disease we've all been saddled with ...
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CAA is Listening

Discussion in 'Action Alerts and Advocacy' started by jspotila, Feb 11, 2010.

  1. Gerwyn

    Gerwyn Guest

    How about a rewording

    CBT has no more benefit in patients With ME than in patients with cardiovascular disease diabetes cancer orthopedic injuries and other medical conditions.

    Stress plays no more of a causitive role in this illness than any other.

    CBT may help to reduce the effects of stress related symptoms but has no effect on the symptoms of the core disease.

    This would make their statements acceptable nothing less

    If this is an advocacy group heaven help us .The phillosophy of medicine is based on "First do no harm"

    They should make this their motto.
     
  2. Gerwyn

    Gerwyn Guest

    What about another disclaimer for the lightening process

    This approach has not been shown to objectively improve the core symptoms of anyone suffering from a chronic incurable neurological disease as diagnosed by a qualified medical practitioner

    Anyone suffering from such an illness will suffer from stress due to the dehibilitating symptoms and the almost inevitable social isolation.

    Any approach that can alleviate social isolation is likely to reduce stress levels

    Any intervention that claims to cure an incurable organic illness with psychological interventions must be treated with skeptisism.

    To date the evidence presented by purveyors of such interventions has failed the examination of forensic analysis.
     
  3. oerganix

    oerganix Senior Member

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    AMEN!!! This was exactly my experience, in the BAY AREA! And thank you a million times DR YES, for telling it like it IS!

    Cort, all those 'studies' re: GET/CBT have been well discounted, disputed, found to be fraudulent and/or they misstate the conclusions of what the evidence really says. Please, please re-read Dr Yes's post on this. AND Prof. Malcolm Hooper's "Magical Medicine, how to make an disease disappear". He demonstrates very well how this idea a big LIE, part of a propaganda effort. So defending them ad nauseum is just, as Dr Yes said, disturbing and distorted.

    The fact that talk therapy and exercise are still being studied and debated in HIV/AIDS, some 20 years after the causes and treatments have been fairly well developed, ought to be a BIG CLUE that we who have ME/CFS do not need any of this BS at this point in time. It is a total distraction from finding cause(s), treatments and/or cure. It is totally out of place in an ME/CFS advocacy organization. Straddling the fence on this, and other tepid responses from CAA, gives the impression that they are ambivalent about our reality. To call CAA 'conservative' is just euphemism for fence straddling. I, for one, want them to get off the fence and get aggressive about advocating for us and educating the public and the medical industry.

    That CAA included that garbage ("you don't know what you want out of life!!!") on GET/CBT in the MARCH 2010 made me feel just like a person who finds their spouse in bed with another person! You can try to explain it away but that first impression is never going away.

    As for the statement that there are no treatments, that is misleading at best. Many people are improving on Ampligen and antivirals. BUT most of us, impoverished by this illness, cannot GET those treatments because, after decades of NON-research on these treatments, they are still EXPERIMENTAL, and thus not covered by insurance, either government or private. Keeping these treatments experimental so that insurance doesn't have to pay for them, is part of the insurance industry strategy. If CAA really wants to help, get aggressive about getting the treatments that are known to work for some into some larger trials, or whatever it takes, to make these treatments available for all of us.

    I will never forget the Dr who testified at the last CFSAAC that she flies twice a week from South Dakota to Reno for AMPLIGEN and that she has been able to continue to work for all these years because she is able to pay for this "experimental" treatment. I would literally give my right arm to have been treated with "experimental" Ampligen for these last 20+ years of total disability, wherein I lost my home, my car, the support of my family and friends, several love-relationships, not to mention my health. To have my arm amputated in return for being able to work and play again would not be too big a sacrifice for me.

    So, to have CAA putting out psyche-lobby propaganda once again is like receiving a bag of dog sh*t that has been set on fire. The first impulse is to stomp on it and put out the fire, but then there is still the dog sh*t to contend with.
     
  4. Cort

    Cort Phoenix Rising Founder

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    I think you can say the first one. You can't say the second one until you understand what causes this disease. Until then a dysregulation in the stress response is a candidate.

    For sure. On the other hand, 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.

    Sure there's no study evidence for LP but neither is there for most treatments that CFS patients use. There's no objective evidence for Vistide, Oxymatrine or any number of treatments. The first Valcyte trial did go very well and we're waiting for the results on the followup. I believe Lerner has some good data on Valtrex (?) but until we figure out the subsets and get more studies that statement - "this approach has not been objectively, etc." will apply to most treatments - LP and the rest.

    Agreed

    .

    No ones done any real forensice analysis - all anecdotal.

    :) . What is the CAA to do with treatments that help peoples quality of life but don't cure? I say they very carefully label them correctly. If you say CBT can help people with symptoms and may have a mild effect on fatigue and pain is that a cure? No it's not. That's essentially what the CAA's own physician education program says.

    That's from their physician education program. Do you have a problem with that?
     
  5. Gerwyn

    Gerwyn Guest

    yes i do i am afraid CBt has never been shown to have any objectively measurable positive impact on symptoms when subject to scientific evaluation.

    Self report questionaires are heavily prone to demand charactersitics and are open to manipulation.

    I dont know of any neurological disease caused by stress.

    The WHO classes our illness as neurological.neuroimmune will do

    .stress may predispose to an infection but th infective ageant causes the disease.
     
  6. Koan

    Koan Be the change.

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    Cort,

    I know you are a big supporter of the CAA and, most likely, have friend there but I hope you can tap into the depth of human misery which is perpetuated by the past, and present, attitudes and strategies of the CAA. Frankly, I believe we could all quite easily discover helpful coping strategies like meditation and thought stopping on our own, and when we discuss managing the illness on forums like this, and do not need to see what money we may have donated to this organization be put to use in a way which is, at best, ineffectual and at worst immoral.

    Patients are bound to feel betrayed when they have paid for the privilege of decades of what in my opinion is no real research! I know there is real research supported by the CAA now but the fact that it is taking place at the same time that Peter White is prominently featured in their material is beyond the comprehension of many of us.

    Please cast a critical eye over the workings of the CAA and open your heart to the suffering of those who are still being pressured into doing ineffectual, sometimes harmful, therapies.

    And, by the way, aside from many UBOs I have other objective signs (reflex abnormalities, pupil abnormalities, EEG abnormalities along with subjective experience of gait problems, balance problems, etc.) of serious neurological illness as do many here.

    Please be as open to the opinions and experience of those in the patient community as you are to the opinions of those at the CAA. You may create a bridge between the two and one is sorely needed. This groundswell of disaffection and dissatisfaction is not without cause.

    Peace out,
    Koan
     
  7. Cort

    Cort Phoenix Rising Founder

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    I think if you read my posts you will see that I do cast a critical eye over the CAA and I do understand there is cause. Di you read my post on the SPARKS document?

    On the other hand I ask you to critically examine your own beliefs.I think its very clear that the below statement is inaccurate and I question why you would post that? I have gone to great length to report on the CAA's research program. I have posted their actual current projects, I have referred to the their former research projects. Is this an objective assessment of the CAA's research program. IF not then why would you say something like that?

    It suggests to me that you are committed to a negative interpretation of the CAA. This doesn't mean that there are not things the CAA could not do better or that it has not made mistakes in the past but that you are committed to focusing on those and ignoring the positive things they have and are doing - some of which I believe are very important to us.

    You can the concentrate on having Peter White appear in one section of that brochure and allow the SPARKS document to wipe out any good the CAA has done. You can allow that to obliterate all the good research they've done, the excellent physician education that followed the poorer physician education program, their efforts to expose the CDC over the past year and a half, the Research Network they're building, etc.

    I think critiques of the CAA's failings and acknowledging them where they succeed is the way to build a strong and effective organization.

    I understand that you have evidence of neurological problems and that many CFS patients do, including myself. The question is whether they've been documented to the research communities satisfaction and if they mean this is an 'neurological' disorder. Until you can tie the many other research findings together and unite them in the nervous system, I don't think you can say this is a 'neurological' disorder vs. a vascular vs a neuroendocrine vs an immune disorder. That's all I'm saying - admittedly poorly :).
     
  8. Koan

    Koan Be the change.

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    Hey Cort,

    Yes, we do have a difference of opinion. I'm afraid I cannot immediately accept your request to retract my statement. I can, however, take on board what you have said and take another look at the history of research funded by the CAA (please feel free to provide any and all information you feel will be helpful to me) and, once I have done that, retract or reword my statement if I agree it is inaccurate. I will amend it now to read that this is my opinion but I assume that everything I read here is opinion - perhaps I should not assume.

    We have agreed to disagree in the past. It is not a bad thing. A range of opinion is not only health, it is inevitable.

    I feel that WPI has, at best, been damned with faint praise by the CAA. I don't understand why.

    Anyway, I'll edit that post to make clear that I was stating opinion.
     
  9. Cort

    Cort Phoenix Rising Founder

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    I strongly disagree with this. I had this for almost 30 years before I really tried it. Maybe I'm slow...but for me CFS - with its concentration problems and all - is a huge block to doing this.
     
  10. Cort

    Cort Phoenix Rising Founder

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    With regards to this

    I think that's what I'm trying to do. I've been critical of the CAA's conservative stance on treatments and the SPARKS document as well as other things. At the same time I'm trying to demonstrate the many good and I personally think vital things the CAA is doing.

    My question is are other people trying to create that bridge? I don't see alot of bridge building attempts. I see some rather emphatic statements that don't leave much room for bridge building.

    CBT is NOT portrayed by the CAA as a cure for CFS. The problem is that simply by mentioning it people jump to the conclusion that they are portraying it that way but they're not. I don't believe that even the CDC portrays CBT as a cure.

    Yes, that SPARKS information should be removed and I don't know why they haven't but check out the Physician Education Program they put together a couple of years ago http://cme.medscape.com/viewprogram/17442

    That is what the CAA thinks about treatment at this point. I'm sure people will be able to find sections they disagree with! :) but as a whole its a very good document. As I said the stats indicated that more people went through that program in the first year that ever went through the CDC's program.

    Given that is this

    true? Are you actually saying that a collaborative research network with a patient biobank and central database and a good physician education program is producing 'depths of human misery"? or are you all wet here?
     
  11. starryeyes

    starryeyes Senior Member

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    IMO

    Cort,
    I was referring to when you said this:

    But obviously, despite what you've said above, you still think the CAA does is wonderful even though they teach our doctors and medical professionals to abuse us as Lisa, Kati, Dr. Yes and Oerganix describe.

    I also blame the CAA for the maltreatment I've received from doctors and nurses and other medical staff who have told me that I'm either faking or that CFS is psychological.

    I blame the CAA for the fact that after finally tracking down the best doctors I could find, these doctors still don't comprehend how severely CFS affects me.

    I blame the CAA for the fact that every CFS patient I talk to says the same thing no matter where in the world they live.
     
  12. Cort

    Cort Phoenix Rising Founder

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    These blanket statements are amazing! You are including in this the CAA's investigation into the CDC as well as these past research projects:
    EBV, HERV's, Repeat Exercise Studies (metabolic dysfunction), RNase L, orthostatic intolerance - just off the top of my head.

    and these current research projects:

    Dr. Kathy Light

    Drs. Kathy and Alan Light and their University of Utah research team are looking for objective diagnostic markers of CFS. Earlier this summer, the Light team published new findings in the Journal of Pain describing blood-based markers that appear linked to symptoms of fatigue and pain in CFS. They are detecting receptors specific to metabolites created by the muscles during a moderate exercise challenge. What is notable is that the markers are not present when CFS subjects are at rest. However, after moderate exercise on a stationary bicycle, the expression of these markers on blood cells increases dramatically in CFS subjects, but not in healthy controls or patients with multiple sclerosis (another condition with substantial pain and fatigue) who exercise the very same way. This means that – so far – these markers appear to detect the post-exertion fatigue that is the hallmark of CFS. A diagram illustrating the difference in the markers appeared on the cover of the October 2009 issue of the Journal of Pain. The Light team is testing more CFS subjects and other disease control groups to determine just how specific these markers are to CFS. If it pans out, this may be the first objective diagnostic blood test for the hallmark symptom of post-exertion fatigue in CFS.

    Dr. Dikoma Shungu

    Dr. Dikoma Shungu at Weill Cornell Medical College and his collaborators continue to examine brain metabolism in CFS. In 2009, Shungu and his team published a paper in a prestigious imaging journal, NMR in Biomedicine, describing increased lactate levels in the brain cerebrospinal fluid of CFS patients. Elevated brain lactate is an indication of metabolic disturbance in CFS. It is notable that this was not found in the healthy control and disease control (generalized anxiety disorder) comparison groups tested. With their current award from the CFIDS Association, Shungu has extended the study to include more CFS subjects and a major depressive disorder disease control group. An exciting aspect of this study is that these subjects will also participate in Dr. Marvin Medow’s study which examines blood flow (see below). This pair of investigative teams has developed a model that is based on infection causing inflammation and oxidative stress that alters blood flow and increases brain lactate. Elevated lactate can be detected by MRS, a non-invasive imaging test. This could be an important approach to detect CFS early in the course of illness, important since the earlier CFS is detected and diagnosed, the greater the chance of effective intervention.

    Dr. Marvin Medow

    Dr. Marvin Medow and his team at New York Medical College study postural tachycardia syndrome (POTS), a chronic form of orthostatic intolerance associated with signs and symptoms of lightheadedness, loss of vision, headache, fatigue, and neurocognitive deficits. Many young people with CFS also have POTS, and at least half of adults with CFS have POTS. Medow studies whether these POTS symptoms are due to reduced brain blood flow. He and his team published a paper in The American Journal of Physiology – Heart and Circulatory Physiology in August 2009 describing decreased brain blood flow and altered regulation of blood flow by the brain in POTS patients. Medow and his team continue to study why blood flow is altered in CFS and are examining chemicals in the body that cause oxidative stress and molecules that affect the function of blood vessels. Subjects that participate in the Medow study also participate in the Shungu study described above. This will allow the Medow findings on blood flow mechanisms in the body to be related to the blood flow and metabolic alterations that Shungu is finding in the brain of CFS patients. This type of integrated study of blood flow alterations has the potential to improve CFS treatment.

    Dr. Gordon Broderick

    Dr. Gordon Broderick of the University of Alberta has been working with colleagues at Northwestern University and University of Illinois-Chicago to understand how Epstein-Barr virus (EBV) can trigger CFS following infectious mononucleosis (also known as mono or “kissing disease”). Broderick is a systems biologist who uses sophisticated mathematical approaches and powerful computers to construct models of CFS based on actual clinical and laboratory data. He has published several papers over the past year that model how the brain, endocrine system, and immune system are altered in people with CFS. A figure from one of his 2009 papers made the cover of the journal Genomics. When he is not in his laboratory, Broderick teaches medical students about computational biology and uses examples of CFS in many of his lectures. Broderick recruited five medical students to conduct research in his group with the objective of raising awareness of CFS and CFS research among tomorrow’s clinicians. In addition to getting exposure in the media, the medical students publish their work in the peer-reviewed literature.

    Dr. Sanjay Shukla

    Dr. Sanjay Shukla of the Marshfield Clinic Research Foundation will study gut microbes in CFS. We now know that humans require the right kind and the right balance of microbes in our intestines to stay healthy. Shukla hypothesizes that people with CFS do not have the right kind and balance of microbes and that exertion causes the microbes to leak across the intestine causing inflammation and metabolic disturbance. He has assembled a team of experts in internal medicine, exercise physiology and bacterial phylogeny to assist him in this innovative study. The team began enrolling patients and controls in July. They will collect blood and stool samples before and after an exercise challenge to study how exertion affects gut function and ecology. Stay tuned to what are certain to be interesting and important results that could impact the diagnosis and treatment of CFS.

    Dr. Bud Mishra

    Professor Bud Mishra and his bioinformatics team at New York University will use computer software they developed to identify subtypes and possible causes of CFS. Mishra and his team are compiling medical records from hundreds of well-characterized CFS patients to accomplish this. Once the medical records have been converted to an electronic form and then “read” and interpreted by the computer, a team of human experts will evaluate how well the computer has interpreted the information. Sound futuristic? Perhaps, but the reality is that using computers to process large records and search for patterns is a smart application of “artificial intelligence.” Many people with CFS have huge binders for their medical records. Mishra’s team is essentially searching medical records from hundreds of CFS patients to identify CFS subtypes and causes. Think of this project as a highly specific application of Google-like technology that will identify new information and translate it for use in clinical settings.

    Are blank characterizations like this helping CFS patients or hurting us? I think they're hurting us alot! This is exciting stuff that you are choosing to ignore apparently because they don't fit your conception of the CAA. Please broaden your conception of this organization. Work on what you believe is problematic and acknowledge them for the stuff that you find helpful. That is building a bridge in my opinion.
     
  13. CBS

    CBS Senior Member

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    Cort,

    You asked the question "how many patients have objective evidence of an 'incurable neurological disease?'"

    The first person to really take my condition seriously when everything was swinging wildly out of control was my neurologist. She's been around for decades and was very quick to see objective signs of neurological dysfunction such as tremors, clonas and TIAs. She also helped my other doctors put together a coherent picture (SOB/speech issues, motility issues leading to SIBO and irregular HR/BP all caused by autonomic neural dysfunction - diaphragm, small intestine and cardiovascular).

    Dr. Bateman has said that its not that physiological underpinnings of CFS are hard to see, rather most doctors refuse to look or have no clue as to what to look for.

    As for the phrase 'incurable neurological disease,' neurological dysfunction does not have to be incurable damage to be driven by physiological processes. Viral replication produces neurotoxins. Neurotoxins cause dysfunction and if left untreated, viral replication can eventually cause permanent neural damage. I've stated many times that doing everything within one's power to lower stress and minimize metabolic demand can help in that it frees up resources which can benefits the immune system.

    However, the reversibility of neurological dysfunction does not necessarily mean that the dysfunction was not caused by a physiological process such as an infection. It also does not warrant the recommendation of (or mitigate the potential damage caused by) one size fits all recommendations to increase activity levels (very gradually or otherwise) as well as the huge set backs in physician understanding of CFS caused by recommendations of CBT (and all of the associated erroneous beliefs).

    The CAA's recommendation of CBT and GET (no matter how qualified) leaves us in the position of having to either distance ourselves from our diagnoses of CFS or to argue against the recommendations made by our own advocacy group.

    How messed up is that?

    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.
     
  14. Cort

    Cort Phoenix Rising Founder

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    I think my stance is much more nuanced than that. I think if you check out their current physician education program that you'll feel much better about the organization.
     
  15. starryeyes

    starryeyes Senior Member

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    I'm never going to feel good about the CAA nor ever support them until they remove their damaging medical educational materials.
     
  16. Gerwyn

    Gerwyn Guest

    The studies in question are worthy pilot studies but i,m afraid that they are no more than that.

    They lack any kind of statistical treatment and hence we cannot determine the approximation of truth that they contain

    .We aslo have no information about generalisability

    .These are prerequisites if they are to be taken seriously by the wider scientific community

    .There is not even any correlative data.promising stuff but not followed up

    .The information given out by the CAA regarding CBT is plain wrong

    Do subtypes exist or is this an artifact created by such a rediculous diagnostic label having no reltionship to the underlying illness whatsoever.

    In medicine it is normal to investigate a disease, determine the characteristic symptomology and then, assign a name to that disease.Our psycho friends have as usually done it backwards.

    Lets start with a diagnostic definition and then fit in the symptoms that suit us
     
  17. Cort

    Cort Phoenix Rising Founder

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    "how many patients have objective evidence of an 'incurable neurological disease?'

    I agree that was not a good statement! I was basically objecting to the characterization of CFS as any one type of disorder - since we can't say exactly what it is. I followed it up with a lousy statement - my apologies.

    Of course I agree with this. I just looked up infection and psychology and noted that infection appears to play a role in several 'mood disorders' ; ie some people get an infection and then come down with something like obsessive compulsive disorder; its clearly caused by an infection. And why wouldn't it be? Why would anything that happens to the brain be able to effect all aspects of the body and the mind? From overexcitation of pain receptors, to fatigue, to movement disorders, to speech problems, etc.

    I agree that's a problem; the CAA's CBT recommendation for certain subsets of patients not all (check out the latest education program by them) should just be one potential part of a large treatment strategy - which is what the latest program - put together in collaboration with Dr. Bateman - portrays.

    I agree that CAA needs to get SPARK out of their and put their own treatment program on there. For those who think I'm just hand in foot with the CAA - I think they've made a big mistake by having that simplistic document up there. It's a very poor representation of the treatment opportunities present for patients. It essentially suggests that there's almost nothing you can do for the disorder which would logically will lead to your situation - where doctors don't do anything for it than offer CBT. I can see why patients are mad about it: I'm not happy about it either. I actually never really read it closely until now.
     
  18. starryeyes

    starryeyes Senior Member

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    Good Cort. I'm glad to see that you understand where we're coming from better. :)
     
  19. Cort

    Cort Phoenix Rising Founder

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  20. Cort

    Cort Phoenix Rising Founder

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    Teej, I hope that once they do that you can look at other aspects of their program.
     

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