Professor & patients' paper on the solvable biological challenge of ME/CFS: reader-friendly version
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If medical establishment thinks PANDAS/PANS is a real disease what took so long for ME/CFS?

Discussion in 'General ME/CFS Discussion' started by leokitten, Apr 8, 2015.

  1. leokitten

    leokitten Senior Member

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    I recently learned of PANDAS/PANS and have done a bit of reading on these illnesses. For an ME/CFS patient it immediately strikes you how PANDAS/PANS mirrors ME/CFS in so many ways:
    • Abrupt onset of symptoms/encephalatic-like onset
    • Diagnosis which is heavily reliant on the symptom presentation
    • Neurological symptoms (anxiety, depression, emotional lability, etc)
    • Immune system involvement (autoimmunity, immune dysfunction)
    • Infectious trigger
    • Sleeping difficulties, enuresis, frequent urination and other urinary problems
    My question to you all is, if the medical establishment fairly quickly recognized these illnesses as real with a biological basis why in the world has it taken them 30+ years to recognize ME/CFS as being the same???
     
    Last edited: Apr 8, 2015
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  2. Sidereal

    Sidereal Senior Member

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    Well actually PANDAS is quite controversial and many doctors have not heard of it or do not "believe" in it.
     
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  3. A.B.

    A.B. Senior Member

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    Blaming children would make doctors look bad, and blaming parents via some hypothetical quasi-magical psychosomatic process is apparently going out of fashion.

    I also suspect that CFS, as serious disease, is a much bigger financial threat to shortsighted selfish insurance companies and health care providers. There are undoubtedly entities that benefit from CFS not being taken seriously.
     
    Last edited: Apr 8, 2015
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  4. halcyon

    halcyon Senior Member

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    I wouldn't say that PANDAS/PANS has achieved the same level of official "acceptance" (I use that word very lightly) that ME/CFS has, but I think it probably did achieve the level it's at way way faster than ME/CFS did. I have no idea why or how.

    We'll never know just how different things might have been had the CDC and media response to Incline Village not been so disastrous.
     
  5. belize44

    belize44 Senior Member

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    My sentiments, exactly!
     
  6. Nielk

    Nielk

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    I know a family with a child that has PANDAS. The disease is as stigmatized as ME/CFS. Mainstream doctors know very little about it and they feel stigmatized and misunderstood. They too have to seek out "specialists" who know and believe the disease. Like us, they have no real treatments. I was struck by the similarities of our stories.
     
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  7. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    I think the problem about PANDAS is that it is as much a theory about a disease mechanism as a name for a group of ill people. To my mind the theory is probably wrong, so I don't think I would accept the PANDAS concept. I am very happy to accept that there are some ill children with real biological disease who get given this diagnosis. Whether their disease is caused by streptococci seems be hard to confirm. Whether it is autoimmune is probably even harder to confirm.
     
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  8. Nielk

    Nielk

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    In what way is your understanding of this disease different than what many doctors understand ME/CFS to be?
     
  9. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    I am not quite sure what you are asking, Nielk. Clearly, PANDAS is a quite different theoretical idea from the various theoretical ideas doctors may have about ME. And I am saying that I am not sure that there is a disease process that ought to be called PANDAS if that implies this particular theory.
     
  10. chipmunk1

    chipmunk1 Senior Member

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    PANDAS is not a generally accepted diagnosis. I would guess most physicians think that PANDAS means that either the caretaker or the child needs to see a psychiatrist.

    http://en.wikipedia.org/wiki/PANDAS
     
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  11. Nielk

    Nielk

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    Mainstream doctors that I have met in my 12 year long journey have told me the same thing about ME/CFS. One, recently told me that he looks at ME/CFS as a parking lot for people who have some vague symptoms that don't add up to anything until, it is discovered that they have another true disease. He was actually nice because he didn't infer that I was crazy or lazy and that nothing was wrong with me.

    When there is not testable biomarker and clearly defined pathologies, doctors seem to jump to the conclusion that there is nothing wrong with the patients. It must be psychosomatic.
    If we were to just copy and paste information about ME/CFS, we would find very similar things. "The only treatment that works is GET and CBT". Therefore, doctors who have not treated, followed or researched ME/CFS patients, will not believe that this is a real biomedical disease.

    Have you heard of Anti-NMDA receptor encephalitis? It is a rare autoimmune disease that affects the brain. It usually affects young people and the manifestation is of someone going crazy. Most patients were left to rot in insane asylums. Recently a book came out "Brain on Fire" by a Ms Calahan, a NY journalist who depicts her experience with this disease. She went from leading a very normal life, to losing her mind - completely. She went to the best doctors and hospitals in NY and all their testing turned up nothing. They declared her insane and refused to treat her. She was almost catatonic when finally a doctor recognized her symptoms and took a brain biopsy to reveal anti-NMDA. They treated her with autoimmune medication and IVIG (I think) and a couple of weeks later she was back home and at work.

    PANDAS works in a similar way. It is also rare. My friend's son who came down with it was a very normal, quiet, polite child who did very well in school. A strep infection was going around in her family but this son didn't have symptoms so my friend did not take him to the doctor. Two months later, he was so affected that he had to drop out of school and could not talk. He had ticks and called out terrible words. My friend was at her wits end. It turned out that he too had a strep infection but being that it was not treated, it went to his brain. Once this PANDAS starts, it is very hard to treat. The earlier one catches it and treats with very strong antibiotics, the better chance of recovery. (Think Lyme disease)

    This is what NIH says about PANDAS:

    The only thing worse than having to endure a serious, debilitating disease is having people and doctors disbelieving.
     
  12. leokitten

    leokitten Senior Member

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    Honestly @Jonathan Edwards maybe I'm reading the wrong information, but to me the theoretical ideas are not different at all? Please enlighten...
     
    Last edited: Apr 9, 2015
  13. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    The theoretical idea is that a streptococcal infection induces through molecular mimicry the production of autoantibodies to basal ganglia. Nobody has ever suggested that in ME!
     
  14. leokitten

    leokitten Senior Member

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    Maybe when it comes to PANDAS yes, but with the higher level PITANDS and PANS groupings I think all they are saying is that an infection or other environmental factor can trigger a misdirected immune response that causes neuroinflammation.

    http://pandasnetwork.org/understandingpandaspans/about-pandaspans/whatispans/
    http://pandasnetwork.org/wp-content/uploads/2013/05/Heirachy-of-PANS-with-credit-copy.jpg

    And this is exactly in line with ME/CFS theories.
     
    Last edited: Apr 9, 2015
  15. warriormom

    warriormom

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    For what it's worth, a few years ago I corresponded via email with Mady Hornig about a possible link between PANDAS and ME/CFS. My children presented with respective cases at the same time, my son with sudden onset PANDAS, and my daughter with ME/CFS. She told me then that this was an astute observation on my part....(not really, it would be obvious to any mother :love:) . She was involved in neuroimmune research (that included PANDAS) at Columbia University prior to joining on with the CFS Initiative.Our conversations led me to believe that she certainly suspects that they may be different manifestations of the same disorder.
     
    Last edited: Apr 9, 2015
  16. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    I still think there is an important difference between a theory of a disease mechanism looking for some patients to have it and some patients looking for a theory for their disease. CFS, ME and SEID are all descriptions of groups of patients, about which we might have theories. For Mady that theory might look very like what she worked on before but I doubt even she would suggest CFS/ME is by definition post-streptococcal or even post-infective. PANDAS, and the other ones I have never heard of seem to be defined as theories of disease mechanism.

    This is a subtle but major distinction I think, but one that most doctors have not even thought about.

    I am not quite sure how it relates to the original question but I can think of a good reason why PANDAS might be accepted, and that is that it is taken to be a more modern and broad version of Sydenham's chorea, which was well documented until penicillin wiped it out. What seems to be unclear is how many physicians are happy to broaden the concept. This particular physician is not very happy with the immunopathological explanation - which seems to be based on the speculations of people like Robin Coombs about fifty years ago.
     
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