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Webinar on Chronic Pain Conditions & the Overlapping Conditions Alliance

julius

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I don't understand how you guys are saying that CFS and IBS don't often show up in the same patients. It's common knowledge. I have both.
 

justinreilly

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I don't understand how you guys are saying that CFS and IBS don't often show up in the same patients. It's common knowledge. I have both.
Gerwyn wasn't saying that ME and IBS don't often show up in the same patients- that's comorbidity which does occur. He was saying Myofascial Pain Syndrome and IBS aren't 'overlapping'. I think a case could be made that ME and IBS are somewhat overlapping, but the conditions in the webinar- ME, vulvodynia, endometriosis and TMJS don't really 'overlap' much imo. Personally, vulvodynia isn't a big problem for me. ME does overlap with other mitochondrial and neuro-immune diseases.
 

justinreilly

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...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
Agreed on both points.

I think CAA should run more with the position that our bad treatment is, in part, a women's rights issue in as much as a good deal of the bad treatment is caused by the sexist idea that ME is just 'hysterical middle-aged women.'

If I understand correctly, breast cancer is able to get what I perceive to be preferential treatment by playing the 'feminist' card, eg people are afraid to oppose disproportionately high funding for breast cancer for fear of being labeled sexist. I point this out to emphasize that claims of sexism in medicine (besides being true in the case of ME) can carry substantial currency, ie they can get us somewhere and thus should be made emphatically.
 

julius

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This is from the Overlapping Conditions Alliance website,

"Current research indicates that these conditions frequently coexist or 'overlap,'"

Clearly by overlap they mean coexist or to be co-morbid. I don't know what you understand 'overlapping' to mean, but it is quite common to use 'overlapping condition' to mean 'co-morbid condition'.


In post #4 Gerwyn wrote;
"Those conditions do not in anyway overlap with ME and the CAA should not be implying that they do."
So your assertion, justinreilly, that "Gerwyn wasn't saying that ME and IBS don't often show up in the same patients" is incorrect.

These conditions are often co-morbid and it is well worthwhile to take a look at why and see if we can learn anything from such investigation.
 
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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.
The Canadian Consensus Definition says ME/CFS are considered to be "overlap syndromes". It says the other syndromes are co-morbidities. These are two different things. The first implies possible common causality with a spectrum of expression. The second does not. Again, I want to emphasize that we patients need to know is the cause, because knowing the cause will lead to rapid diagnosis and, hopefully, cure. It is very important to keep all of our eyes on the ball: etiology.

I just read Dr. Buchwald's article and didn't find it particularly enlightening. It mostly seemed to list the things we don't know. It talks about possible causes, but she herself doesn't seem to think any of them are very convincing. Plus, it was written four years ago, and quite a bit has happened in the ME/CFS world in the past four years. The last paragraph was the best part:

As a final caveat, describing an illness as unexplained
should not be taken to mean unexplainable
or imaginary. Researchers and clinicians involved
with patients suffering from unexplained clinical
conditions would do well to remember Oslers words
that the study of medicine begins with the patient,
continues with the patient and ends . . . with the
patient.

As to the issue of NIH funding, I agree it's important to look at all possible sources for funding research into the causes of and potential cures for ME/CFS. However, it isn't useful to throw money in a direction that isn't likely to be fruitful, especially if the NIH then gets to say that it's spending a lot of money on CFS research when, in fact, it's researching pain syndromes or TMJ or endometriosis. I think we've been down that road before. We need research on ME/CFS.

I'm really not trying to get into a fight with anyone here. As I said before, I'm trying to be helpful. I'm trying to respectfully explain my concerns about the CAA, which I think are shared by others. If the CAA is not interested in those concerns or doesn't consider them to be valid, so be it. :Retro smile:
 

Otis

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I'm really not trying to get into a fight with anyone here. As I said before, I'm trying to be helpful. I'm trying to respectfully explain my concerns about the CAA, which I think are shared by others. If the CAA is not interested in those concerns or doesn't consider them to be valid, so be it. :Retro smile:
And in the spirit of actions speak louder than words, I continue to be confounded by, and frustrated with the CAA.
 

julius

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@ The Phantom

Again from the Overlapping Conditions Alliance website;
"Current research indicates that these conditions frequently coexist or 'overlap,'"...."Research on the overlap of these conditions is in its infancy, so we don’t know how/why they are connected. There are many unanswered questions.'
http://www.tmjds.org/drupal/

There's no implication of common causality here. Just an acknowledgement of co-existence.

I am gathering from reading this thread that those posting here wish that the CAA would stop wasting money by actually investigating CFS. I suppose the best way is to wish really hard and wait for all the answers come to you magically first, and then start researching. I agree, that would be great. Unfortunately, things don't work that way.

You have to look around first. Ask questions, like, "hey, why do these conditions seem to show up together? I wonder if by investigating the connection we could find a clue as to what is going on."

But I guess you guys are right. The magical fairy waiting method is much better.
 

Otis

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@ The Phantom

Again from the Overlapping Conditions Alliance website;
"Current research indicates that these conditions frequently coexist or 'overlap,'"...."Research on the overlap of these conditions is in its infancy, so we dont know how/why they are connected. There are many unanswered questions.'
http://www.tmjds.org/drupal/

There's no implication of common causality here. Just an acknowledgement of co-existence.

I am gathering from reading this thread that those posting here wish that the CAA would stop wasting money by actually investigating CFS. I suppose the best way is to wish really hard and wait for all the answers come to you magically first, and then start researching. I agree, that would be great. Unfortunately, things don't work that way.

You have to look around first. Ask questions, like, "hey, why do these conditions seem to show up together? I wonder if by investigating the connection we could find a clue as to what is going on."

But I guess you guys are right. The magical fairy waiting method is much better.
I would grant you that point (outside of your fairly tale comment) if that were what the CAA was doing, even if I didn't agree with the approach. Earlier in this post Jennie has said the CAA isn't investing resources (beyind the webinar) in researching this subject - unless perhaps some funding might be available as a result from this ill-defined alliance. She has also chosen to ignore my question as to why these conditions are favored on the agenda over FM I would argue would be the most relevant of 'pain' conditions related to CFS.

Given the legit subgroups ME/CFS left out of the biobank why would I want the CAA throwing WIDER ropes around conditions sharing nothing more than pain with CFS.
 

jspotila

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Earlier in this post Jennie has said the CAA isn't investing resources (beyind the webinar) in researching this subject - unless perhaps some funding might be available as a result from this ill-defined alliance. She has also chosen to ignore my question as to why these conditions are favored on the agenda over FM I would argue would be the most relevant of 'pain' conditions related to CFS.
I'm not ignoring your question, or anyone else's points here. I can't answer your question about why FM is not being specifically addressed in the webinar. It might have been just a scheduling issue. This webinar is an introduction to the Overlapping Conditions Alliance, and is not intended to address specific clinical issues associated with pain in CFS or FM. There are upcoming webinars that will address treatment issues, featuring clinicians like Dr. Lapp. I understand that this particular webinar on the Alliance will not be of interest to everyone. I simply shared the info on it so those who are interested have a chance to sign up.

I will say again, in case it was not clear before, the Association is not abandoning CFS research, nor is the Association investing research dollars in the Overlapping Conditions Alliance. I will also add that the Association has been funding research into etiology and pathophysiology of CFS from its first day of operation. I agree with The Phantom that cause is critical.
 
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Insults are not particularly helpful

@ The Phantom

Again from the Overlapping Conditions Alliance website;
"Current research indicates that these conditions frequently coexist or 'overlap,'"...."Research on the overlap of these conditions is in its infancy, so we dont know how/why they are connected. There are many unanswered questions.'
http://www.tmjds.org/drupal/

There's no implication of common causality here. Just an acknowledgement of co-existence.

I am gathering from reading this thread that those posting here wish that the CAA would stop wasting money by actually investigating CFS. I suppose the best way is to wish really hard and wait for all the answers come to you magically first, and then start researching. I agree, that would be great. Unfortunately, things don't work that way.

You have to look around first. Ask questions, like, "hey, why do these conditions seem to show up together? I wonder if by investigating the connection we could find a clue as to what is going on."

But I guess you guys are right. The magical fairy waiting method is much better.
Fine. We disagree on what the most promising avenues of research are. No one is advocating waiting nor relying on magic.
 

justinreilly

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@ The Phantom

Again from the Overlapping Conditions Alliance website;
"Current research indicates that these conditions frequently coexist or 'overlap,'"...."Research on the overlap of these conditions is in its infancy, so we don’t know how/why they are connected. There are many unanswered questions.'
http://www.tmjds.org/drupal/

There's no implication of common causality here. Just an acknowledgement of co-existence.

I am gathering from reading this thread that those posting here wish that the CAA would stop wasting money by actually investigating CFS. I suppose the best way is to wish really hard and wait for all the answers come to you magically first, and then start researching. I agree, that would be great. Unfortunately, things don't work that way.

You have to look around first. Ask questions, like, "hey, why do these conditions seem to show up together? I wonder if by investigating the connection we could find a clue as to what is going on."

But I guess you guys are right. The magical fairy waiting method is much better.
They do say "co-exist or 'overlap'" in that passage; but in the webinar info it just says "overlap". More importantly the name of the org is "overlap." It sounds like you define 'overlap' as simply 'co-exist' which is a narrower definition than the others posting here (including me) would give it.

Noone is saying CAA has abandoned ME research! Or that anyone is wishing upon a star. Not sure where you got these ideas.
 

justinreilly

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I'm not ignoring your question, or anyone else's points here. I can't answer your question about why FM is not being specifically addressed in the webinar. It might have been just a scheduling issue. This webinar is an introduction to the Overlapping Conditions Alliance, and is not intended to address specific clinical issues associated with pain in CFS or FM. There are upcoming webinars that will address treatment issues, featuring clinicians like Dr. Lapp. I understand that this particular webinar on the Alliance will not be of interest to everyone. I simply shared the info on it so those who are interested have a chance to sign up...
OK; that clarifies a few things. Thanks for the info.
 

Stuart

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Fibromyalgia and Chronic Myofascial Pain would be a better addition to this group.

TMJ can often be due to myofascial trigger points (TrPs) in the head and neck. Pelvic pain can also be due to trigger points. Few doctors are up to date on fibromyalgia, and even the best fibromyalgia specialists I find don't know much about chronic myofascial pain as a seperate but synergystic entity. The work of Travell and Simons is extensive, but not well studied.

ME/CFS patients and FM patients have symptom overlaps, in fact some think many FM patients are undiagnosed ME/CFS patients. The biological findings and dysfunctions can be similar.

A big issue any chronic pain patient has is having a doctor that understands the needs of a chronic pain patient. Many docs don't like prescribing the meds needed, often with the patient having to go to a pain clinic. Some useful modalities such as massage or acupuncture are not covered or quite limited. If the pain is due to trigger points, they have to be resolved and the perpetuating factors dealt with - more often they are just treated in an inefficient short term manner.
 

Hope123

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Gerwyn's point is well-taken along with others.

To me it's always been a question of how much actual co-moribidity there is with CFS vs. the Fukuda definition being so watered down that all sorts of disorders fit under the heading of "CFS."
I say this as someone with clinical experience.

What I would like to see are actual studies (references, anyone?) or at least clinicians talking about their clinical experience about these overlaps. From what I've read the overlap for CFS with FM has ranged between 15% to 70% (quite a wide gulf there) with the 15% coming from a study by Dr. Jason. This is in comparison to the general population prevalence of FM which is
1%-6% so this suggests that someone with CFS is much more likely than the general population to have FM and suggests a linkage.

Other types of co-morbidities like IBS, etc. I've heard of from patients/ clinicians and much less so TMJ. I would like to see numbers/ percentages attached to these co-morbidities and how prevalent they are in CFS vs. general population. If they are less or equally common in CFS vs. general population, that might put the co-mobidity lower down on the priority list or suggest it is not linked to CFS per se. (Unfortunately, my sense is very little GOOD work has been done on this.) For example IBS is quite common - a quick google figure was 14% - in the general population.

(On the other side, proposed linkages to autism are also somewhat weak other than Dr. Mikovits talking about some pre-lim data on XMRV and autism. Theories are fine but data is better to me.)

The problem with linking so many things to CFS is that it gets us further and further away from what might be "true" CFS. The issue about having knowledgeable scientists on the NIH panels deciding which, if any, CFS grants are funded has been an issue for a long time. From what I remember people were complaining because aside from psychologically-based experts making up more of the panel than CFS or even infectious disease experts, there were people like the dentist with a background in TMJ, which to me, isn't really helping us.

Perhaps in future research, co-morbidities could be broken down by how common they are in people who fit Canadian Criteria vs. Fukuda criteria?
 

jspotila

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Other types of co-morbidities like IBS, etc. I've heard of from patients/ clinicians and much less so TMJ. I would like to see numbers/ percentages attached to these co-morbidities and how prevalent they are in CFS vs. general population. If they are less or equally common in CFS vs. general population, that might put the co-mobidity lower down on the priority list or suggest it is not linked to CFS per se. (Unfortunately, my sense is very little GOOD work has been done on this.) For example IBS is quite common - a quick google figure was 14% - in the general population.
The article by Dedra Buchwald I linked to earlier includes this:

Likewise, irritable bowel syndrome occurs in 58-92% of CFS patients, 32-80% of FM patients and 64% of TMD patients. Lifetime rates of strictly defined IBS among patients with CFS, FM and TMD [TMJ] greatly exceed the frequency in control subjects (64-92% vs. 18%) and the general
population (9-21%). Clinical similarities have also been shown in the symptoms reported by FM and IC patients. With regard to multiple chemical sensitivity, 53-67% of CFS patients report a worsening of their illness with exposure to various chemicals, and 55% of FM patients experience symptoms consistent with MCS. On the other hand, 30% of patients with MCS experience CFS.
I believe that Dr. Buchwald has published a number of papers on this, but more research is needed. I like the idea of testing whether the rates of co-morbidity are different for Fukuda vs. Canadian.
 

Hope123

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I believe that Dr. Buchwald has published a number of papers on this, but more research is needed. I like the idea of testing whether the rates of co-morbidity are different for Fukuda vs. Canadian.
This is my personal opinion but looking at the range of Dr. Buchwald's work over a number of years, it appears she went from a mostly biological model (working with Komaroff) to one focused more on "chronic fatigue" than CFS. It is true that she states in her articles that they are about "chronic fatigue" rather than CFS but I think people tend to confuse the two issues as she started working out on CFS. (In fact one of her papers about CFS had N=3 CFS patients with the majority being chronic fatigue. How can one make conclusions from an number that low?) I also have not heard particularly great reports about the clinic she runs and I happen to be, if anything, positively biased about the place she came from since I trained there as well.

I'll look for the reference you quote but the issue is if these studies originated from Fukuda/ empiric defined samples, the same problems still exists.