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In Brief: Muscles and the 'myalgia' in ME/CFS
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Webinar on Chronic Pain Conditions & the Overlapping Conditions Alliance

Discussion in 'General ME/CFS News' started by jspotila, Apr 23, 2010.

  1. jspotila

    jspotila Senior Member

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    Chronic Pain Conditions & the Overlapping Conditions Alliance
    Date: May 5, 2010
    Time: 3:00 PM (EDT)
    Registration: https://www1.gotomeeting.com/register/222396689

    Chronic paindefined as pain persisting more than six monthsis all too common. It is estimated to affect 25 percent of Americans and account for more than 20 percent of all physician office visits. Some people suffer from two conditions, while others have three or more. In some cases, individuals suffer from one condition for many years before developing a second or third; in other cases, individuals experience symptoms of several conditions simultaneously. These disorders make life very difficult for millions of sufferers and their families.

    In this webinar organization leaders will describe four of the conditions that have sldelined as many as 50 million lives and cost up to $80 billion each year. The four conditions to be spotlighted are: chronic fatigue syndrome, endometriosis, temporomandibular (TMJ) disorders and vulvodynia. These four either solely affect women, or target women at least four times more often than men.

    Speakers:

    CFS: Kim McCleary, President & CEO of the CFIDS Association of America

    Endometriosis: Mary Lou Ballweg, President & Executive Director of the Endometriosis Association

    TMJ: Terrie Cowley, President of the TMJ Association

    Vulvodynia: Christin Veasley, Associate Director of the National Vulvodynia Association

    These four organizations have formed the Overlapping Conditions Alliance, a group of independent nonprofit organizations seeking to advance the scientific, medical and policy needs of individuals affected by medical conditions that frequently overlap. More information about the OCA can be found at www.overlappingconditions.org. Join us for this informative program to learn more about each of these conditions.

    ***

    Two webinars in one week! The other is an update on the Association's research program:

  2. Gerwyn

    Gerwyn Guest

    Do they not mean overlapping symptoms.There is no medical or other scientific evidence that the conditions overlap any more than lyme disease and endometriosis .The causes of the conditions are different .More to the point the causes of vulvodynia and endometriosis are known.How exactly do the symptoms of these patients overlap with the array of symptoms present in ME?.wouldn,t the CAA be more productive in attempting to redouble its efforts in finding the cause of ME rather then engaging in self praise regarding the number of webinairs it puts out?.

    TMJ symptoms overlap with ME symptoms as much as ME symptoms overlap with athritis .ME is not a chronic pain condition but it is a neuroimmuno endocrine condition.None of the others are.This appears to me to be yet more muddying of the waters.Calling ME/cfs a chronic pain disorder is medically incorrect and something I find personally insulting.I dont know how others feel on the matter.I would have thought that a patient advocative group would at least use an accurate description of the disorder.Of all the thousands of papers researching into the causation of ME/cfs none have described it as a chronic pain disorder.

    Why on earth are the CAA trivulising the condition using such a name.
  3. jspotila

    jspotila Senior Member

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    This is not directed at you personally, Gerwyn, but I get whiplash trying to keep track of all the different "most important" things people want the Association to do. Research the cause! Get more federal funding! Change the website! Change that other website! Communicate with patients! Work with other groups! And so on and so on. Sorry if my frustration is showing.

    To your other points, Gerwyn, here is the description of the overlap of these conditions from the Overlapping Conditions Alliance website:

  4. Gerwyn

    Gerwyn Guest

    If they get thigs right in the firstplace Jenny there is no need to change.

    There is no medical connection between the conditions highlighted in the webinair.

    The cause of all apart from Me is fully understood.

    The content of the website is scientifically incorrect.

    Those conditions do not in anyway overlap with ME and the CAA should not be implying that they do.

    Rheumatoid athritis and osteoathritis are both conditions causing chronic pain but no one with any Medical knowledge would call them overlapping conditions.

    It is this type of nonsense that people persistently complain about but the CAA keeps engaging in.

    If the management wants fewer criticisms then the people involved should stop acting as agents of their own downfall rather than blaming the critics.

    This is by the way no reflection on you just exasperation on my part. It does not take that much time or effort to get the fundamentals of the medicine and the science right..This is what fustrates so many of us!
  5. Otis

    Otis Señor Mumbler

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    Jennie,

    A few of comments/questions, which may to a degree overlap with Gerwin's comments.

    Pain is not required for a CFS Dx so I have trouble with categorizing it as a chronic pain syndrome. In many cases it is, including mine, but again not by all patients.

    I also find it odd that fibro isn't represented in this webinar. Why is it not included? If there is a strong corrolation with CFS with WIDESPREAD, chronic pain it would be fibro. Dr. Bateman has called fibro "CFS with pain". I've seen anectotal percentages of overlap between them but never a paper.

    The alliance would appear to be taking some amount of time and money away from the focus on CFS. What is being committed here? Is this alliance a new focus (to possibly include research dollars??) for the CAA?

    Finally I would much rather see an MD representing the pain component of CFS as it would lend some more credibility to the presentation and would draw much more interest that I might hear something new from a medical/scientific perspective.

    Otis
  6. pollycbr125

    pollycbr125 Senior Member

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    i too have major issues with pain i have been diagnosed with me/cfs but not fibro ? infact along with the neuro stuff pain is probably my biggest bugbear .:worried:
  7. Gerwyn

    Gerwyn Guest

    absolutely Otis now a webinair with ME FYbro and Autism would make sense given the potential for common factors in their aetiology.To focus on conditions with nothing in common but pain seems total folly.Yes a number of people with ME have IBS but the majority of people with IBS dont have ME.The same applies to endometriosis.There are dozens of conditions which have pain as a common symptom are the CAA seriously saying that all these conditions overlap!
  8. jspotila

    jspotila Senior Member

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    It's true that pain is not a required part of the Fukuda criteria, but it IS required under the Canadian definition:

    Since pain is such a big problem for so many CFS patients, the Association thinks it must be addressed. As an anecdote, one of things I hear most often from people is "I didn't realize you had that much pain. I didn't know pain was part of CFS."

    Fibromyalgia and Interstital Cystits are both listed conditions on the Overlapping Conditions Alliance web page. While those two illnesses will not be discussed in the webinar, they are both common co-existing conditions for people with CFS.

    The Association has not invested any money in the Overlapping Conditions Alliance, and this affiliation is not intended to override any of the work we are doing on research. The Association believes that working with the allied groups will help in our public policy efforts. Combined, these conditions affect 50 million people and costs billions of dollars. Working together on a united front should help us make our case for more research dollars. But this alliance is not a replacement or distraction from our research efforts, research network, BioBank or pursuit of federal research dollars.


    This is a good suggestion, Otis. We have several webinars coming up addressing treatments, orthostatic intolerance and so on. Having a clinician come in to talk specifically about pain is a great idea.
  9. Gerwyn

    Gerwyn Guest

    SO you are now saying that the CAA will not be using the FUKUDA definition from now on.I repeat that the conditions discussed are not overlapping.Pain may be a common symptom but that is true of hundreds of conditionsAre the CAA members involved saying all these conditions overlap. I didnt realise that the CAA drew up their programmes based on anecdotes.

    There is a growing body of evidence that FM and autism may share at least some causative factors.Yet these are not going to be discussed while conditions with no causative connections are going to be.

    People with ME have a myriad of other symptoms apart from pain.What can lay people contribute to the area of pain management? why waste time on such peripheral matters? what can the CAA contribute in a webinair which is not already in the public domain?This is a webinair for the sake of having one.
  10. jspotila

    jspotila Senior Member

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    Gerwyn, I did not say that the Association will not be using the Fukuda definition. And the Association does not base its programs on anecdotes. I offered my own anecdote as so many people on the forum do.
  11. Gerwyn

    Gerwyn Guest

    i think the point i was making is that the CAA only use the CCD when it suits them.pain is not a crtitea for a feduka diagnosis .The caa have always favoured the FUKuda definition now someone challenges a webinair on pain the CCD is quoted as a justification.Yet Dr Vernon did not comment on the difference between the CCD cohorts and the ones selected by oxford when she had an opportunity to do so.The CAA cant have it both ways.You stated that the CAA "felt"that pain issues should be addressed.That sounds that decision based on a whim to me,particularly when the most painful, in fact the only overlapping condition, is left out. I repeat that the conditions in the webinair don't overlap in any way.Pain is common to hundreds of conditions do the CAA seriously think that all these conditions overlap. There is no logic in this course of action alone.Vernon and Mcleary are lay people getting involved in a medical topic .There can be no benefit so why do it?

    endometriosis is an example of metaplasia how on earth do the CAA think that this conditions cause overlaps in anyway with the causes of ME.It is totally nonsensical
  12. Otis

    Otis Señor Mumbler

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    Yes, I'm much more interested with the causes and treatments of pain that a general discussion of the topic. I live with immense amounts of pain but would rather hear specifics on the topic. I'm pretty well convinced this one isn't for me, which is fine.

    I asked
    You replied:

    Yes, I understand they are both listed, but that really wasn't a response to the question which was "Why is it (Fibro) not included?". I would contend that Fibro is most CFS-like if not just another flavor of CFS (my personal experience is that Dr. Bateman is correct) and if you want to talk about overlapping conditions that how about addressing the one with the MOST common symptoms. Anecdotal XMRV data indicates it's prevalent in Fibro as well. Pain is the defining symptom of Fibro. So I'm baffled why Fibro wouldn't be at the top of the list for this discussion.
  13. The Phantom

    The Phantom Member

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    I think it's important to emphasize Gerwyn's point that there is no evidence that these particular four conditions share a common cause. Therefore, it's not useful to group them.

    I think the frustration with CAA that is being expressed here is that the CAA hasn't in the past emphasized the search for a cause above all else. The CAA appears to many of us to be willing to accept the possibility that there is no cause. People with the disease know there is a cause, because many of us got sick over night. Something caused us to get sick. People with ME/CFS are angry that the cause hasn't been found and that the medical profession and the general public assume that, since the cause hasn't been found, there is no cause. If there is no cause, then it must be all in our heads. This has been the logic used to abuse, ignore and marginalize ME/CFS patients for decades now. I'm trying to say this very calmly, because it makes me angry, too, and I don't want to seem like I'm ranting. I think the CAA will have fewer problems with the patient community if the organization keeps in mind at all times that there is a cause or causes; the cause(s) just hasn't been identified for sure yet. Once the cause(s) has been identified it will be possible to develop diagnostic tests and treatments. It may be possible to develop some diagnostic tests and treatments before the cause is definitively established. In fact, this has already been done by some of our best doctors. Unfortunately, they're not definitive tests or treatments because we don't yet have a validated cause. But it will be much easier once the cause(s) is established. I think the CAA needs to put up a big sign its office that says "It's the etiology, stupid". I mean no disrespect by saying this. I'm trying to be helpful. It does no one any good for patients and an advocacy organization to be at odds with one another.

    There also needs to be another sign. This one should say "It's the definition, stupid." This sign could come down as soon as the CAA endorses the Canadian Consensus definition. Until we know who we're talking about we won't be able to find the cause. ME/CFS is not a "pain condition". It's ME/CFS. I think it was Dr. Cheney who pointed out that five of the Fukuda criteria involve pain, yet some of his ME/CFS patients don't have pain. I think he would agree that all of his patients have post-exertional malaise. Yet that symptom is not required to meet the Fukuda criteria, as Dr. Jason pointed out in his webinar. Every ME/CFS patient I know has cognitive problems. Most, if not all, have autonomic nervous system problems. And most, if not all, probably have cardiac problems, often undiagnosed. People with vulvodynia don't have these problems--they have vulvodynia. It is disheartening that the CAA doesn't seem to understand these basic concepts.

    So, to go back to Gerwyn's point, it isn't useful to discuss "overlapping conditions" that overlap because they have pain in common. They don't have the cardinal symptoms of ME/CFS, post-exertional malaise+cognitive dysfunction+autonomic nervous system dysfunction+cardiac dysfunction, in common. It's unlikely they have a common cause. It's not useful to discuss them together.

    The CAA's BioBank has great potential to address the issue of causality. It is critical that it's clear which of the tissues collected come from people who meet the Canadian Consensus definition and which meet Fukuda, and that it's possible to identify what constellation of symptoms each person has.

    Please remember: there is a cause. It's just not definitively identified yet.

    By the way, I realize this is an oversimplification. There are very annoying political and economic reasons why we don't have a cause. I'm leaving all that out to make a point. Also, I don't have the Canadian Consensus definition or the Fukuda criteria in front of me, and I do have cognitive dysfunction, so I may be leaving something out. It's the concept of a specific cause or causes for a specific constellation of symptoms that I'm trying to convey.
  14. jspotila

    jspotila Senior Member

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    First, no one is saying that these conditions overlap due to a common cause. The fact is that there are a number of conditions that occur more frequently in CFS patients than in the general population. The Canadian Case Definition points this out:

    Dr. Dedra Buchwald wrote an article for The Chronicle in 2006 addressing some issues raised by the overlapping conditions: http://www.cfids.org/pdf/alphabet-soup.pdf

    One important and related issue to consider is that NIH has some very well-funded initiatives on pain and chronic pain. The prominence of pain in CFS gives us a potential hook into that money. I encourage people to attend this webinar to hear more about how working with overlapping groups may give CFS more leverage with funders and policy makers.
  15. Otis

    Otis Señor Mumbler

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    Your last sentence, for me, is a reason to look at this angle. Creative funding approaches are almost required right now.

    But Phantom does make some good points in terms of how I (won't speak for anyone else) perceive the public face of the CAA even if behind closed doors the mission is laser focused and on target. It's taken a long dialog to get to the point to see why this angle might benefit the community, which kinda makes my point for me.

    Otis
  16. Gerwyn

    Gerwyn Guest

    They are not overlapping conditions The caa are calling for research into common causation or at least the overlapping conditions group are.there are hundreds of conditions which share pain as a common symptom.the CAA is being scientifically illiterate in claiming that these conditions overlap.They are not overlapping groups. those conditions are more common in many illnesses compared to the general population that does not make them overlapping.If the CAA want to discuss overlapping conditions try FM and autism where there is scientific evidence suggesting common factors in causation rather than the opinion of one person.To consider mps and IBS as overlapping syndromes is nonsence.The Canadian definition uses the term within inverted commons which means that there is no real or scientific relationship.they certainly dont suggest that they are overlapping conditions
  17. Gerwyn

    Gerwyn Guest

    They are not overlapping conditions The caa are calling for research into common causation or at least the overlapping conditions group are.there are hundreds of conditions which share pain as a common symptom.the CAA is being scientifically illiterate in claiming that these conditions overlap.They are not overlapping groups. those conditions are more common in many illnesses compared to the general population that does not make them overlapping.If the CAA want to discuss overlapping conditions try FM and autism where there is scientific evidence suggesting common factors in causation rather than the opinion of one person.To consider mps and IBS as overlapping syndromes is nonsense.The Canadian definition uses the term within inverted commons which means that there is no real or scientific relationship.they certainly don't suggest that they are overlapping conditions

    If on the other hand the CAA is trying to play the "feminist" card then I applaud them for their intelligence and creativity. Just please don't throw any more pseudo science into the mix we have more than enough trouble with that already
  18. Jerry S

    Jerry S Senior Member

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    Originally posted by The Phantom:

    Yep, you get it, Phantom. Well said, brain fog or no.

    Jerry
  19. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    I agree that this (and anything else I've ever heard from CAA) doesn't imply there isn't a cause.

    I agree with you and Gerwyn that it sounds like it may make political sense to lobby together with other 'pain conditions'. It seems not a whole lot is known about pain and treatments are certainly in the dark ages.
  20. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    I agree they are not overlapping disorders; that the only overlapping disorder here is Fibro. Although It's interesting that PEM isn't as prominent in fibro as in ME to the extent that exercise is often beneficial in fibro. All of these are fairly co-morbid disorders, and that's a topic worthy of investigation. Some of the symptoms overlap, eg pain, but as you rightly point out there are many disorders that cause pain. But the fact that all these disorders have pain doesn't mean the conditions themselves overlap. This type of talk reminds me of the papers that say 'cfs and depression have many overlapping symptoms'- yes technically that's true, but saying cfs and depression are overlapping or even related betrays a fundamental ignorance of the disorders.

    I think it's not inaccurate to characterize ME as a chronic pain disorder. As Otis noted, Fukuda does require pain as 5 of the 8 symptoms are pain symptoms and one needs to have 4 of the 8 to get a diagnosis.

    Different studies say different things, but it's my understanding that having ME without pain is pretty rare. I think Cheney says something like one percent of his patients don't have significant pain. It's possible these people don't really have ME, though I pretty much trust a diagnosis by Cheney.

    The worst symptom of my ME was muscle pain until I found an effective treatment (far infrared heat).

    I'm not sure what combining all these conditions in one presentation will contribute unless Ms. McCleary and others really have a profound understanding of the science of pain and how different manifestations of pain in these disorders can somehow shed light on each other. I would doubt this since the pain journal article she wrote didn't specifically mention much about pain in ME! Ms. McCleary is an appropriate person to speak on ME including the science of ME to government law and policy makers and on camera to the media, but I think a very knowledgeable health care provider or researcher would be a better person to address ME pain to a patient audience. But maybe I will be surprised.

    I'm not outraged or anything about this webinar, but I would be surprised if it were the best use of Ms. McCleary's time considering there is a mess to be cleaned up at CAA and CAA pays her an, imo, exorbitant amount to manage. CAA might benefit if Ms. McCleary didn't engage in this type of non-core duty (core being management)- although I don't know if she typically does do this type of non-core work.

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