Article: Ottawa Conference Reports III: The Most Expensive Disorder: Clauw on the Fibromyalgia and C

Article: Ottawa Conference Reports III: The Most Expensive Disorder: Clauw on the Fib

You can view the page at http://forums.phoenixrising.me/content.php?525-Ottawa-Conference-Reports-III-The-Most-Expensive-Disorder-Clauw-on-the-Fibromyalgia-and-CFS-ness-of-Chronic-Illness

 

Very interesting reading for people with fibro/IC/CPPS/other chronic pain syndrome !!!

 

Very interesting reading for people with fibro/IC/CPPS/other chronic pain syndrome !!!

Thanks Svet - I thought it was one of the more interesting presentations at this conference (or any actually). It will be very interesting to see if Clauw's central conclusion - that all these disorders are related - takes hold. An interagency working at the NIH has just formed involving CFS and these other disorder to encourage cross-discipline interactions. Mangan said it was a 'high-level' group.

 

Interstitial C-Y-S-T-I-T-I-S

sorry For being the orthograph police. It's one of my pet peeves

 

Interesting...just read this article in Wired which has some interesting things to say:

http://www.wired.com/magazine/2011/12/ff_causation/

One of the challenges is the complexity of the brain. In fact, it is so complex some of the major pharma co.s are giving up on research for now because of the complexity. It would make sense that the neuro-immune diseases have made so little progress due to the clearly complex nature of the interactions and/or dysfunction going on. Not sure I feel any better about our prospects!

Ancient Daze should check this out. I was thinking of his pontifications as I read the Wired article

 

Interesting stuff, and a very good write up, Cort. Thanks for that.

Good to see somebody in the medical establishment standing up for the medical benefits of cannabis.

I do have to nitpick two points from Clauw about it though.

Firstly, the risks of serious lung disease from smoked cannabinoids is more-or-less statistically nil.

"Our results may have been affected by selection bias or error in measuring lifetime exposure and confounder histories; but they suggest that the association of these cancers [of the mouth, throat and airways] with marijuana, even long-term or heavy use, is not strong and may be below practically detectable limits."
http://www.ncbi.nlm.nih.gov/pubmed/17035389

"Given the consistently reported absence of an association between use of marijuana and abnormal diffusing capacity or signs of macroscopic emphysema, we can be close to concluding that smoking marijuana by itself does not lead to COPD."
http://www.ncbi.nlm.nih.gov/pubmed/19364782

Nonetheless, there are unquestionably much safer methods of delivery, particularly tincture (applied sub-lingual or dermal), and inhaling vapourised canabinoids.

Secondly, it is true that there is a statistical risk of developing schizophrenia associated with using cannabis before about 18-20 years of age. But as I understand it, it is also true that the risk is quite small, and really only applies to the section of the teenage population already at risk for developing schizophrenia. (Which is not to downplay the potentially serious consequences of developing the disorder.)

 

Thanks for another interesting article Cort - very interesting to see specific area(s) of the brain thought involved. Central pain syndrome (damage to the CNS) was very evident to my Docs from uncoordinated and difficult movement (even without pain) - demyelisation the chief suspect, but that is allowed for in this model.

(High dose Gabapentin did marvels for a while)

 

"Placebo Effect - Dr. Clauw is big on non-pharmacological approaches to these disorders. He believes their value is minimized in clinics but time and time again they have been shown to be helpful. In his experience, people who have successfully dealt with FM or CFS have all used these techniques and they tend to work better than pharmacological treatments. His online guide to Fibromyalgia contains 10 self-management (i.e. behavioral) modules. (Lynne Matallana, the founder of the National Fibromyalgia Association, successfully used them to treat her FM.) He stated the trend in FM toward using these techniques is being mirrored in such disorders as diabetes, asthma, COPD and others."

I once had a doctor who prescribed me such a low dose of codeine that it was useless. Not to mention codeine makes me vomit which is in my chart. He told me it was something else that was much stronger. I remained in quite a bit of pain the entire time I saw him and wondered why I was nauseous and vomiting more often. Beware of someone who says they like the placebo effect. I think that is just code for "I don't take these patients seriously and it is a psychological disease."

I personally have found that Tramadol (an opiate) works the best for fibromyalgia pain. Without it I cannot function. I hear the same from many people with fibromyalgia. Thus, I am not buying the story that opiates don't work or make things worse. They do work. I get very nervous when so called experts talk about how we shouldn't be using them. That would leave a lot of people more disabled then they are now. As he said, nothing works 100% for fibromyalgia pain.

 

The bit about the anti-depressant and the brain was intriguing as well as the CNS roles. I did read the 'treatments' too but like Mya (above) I took a large pinch of salt. Mind you I will try anything at least twice - so bring it on and we shall see. Having said that, I don't have Fibro and I wouldn't rank 'pain' as one of my priority symptoms either.

 

Beware of someone who says they like the placebo effect. I think that is just code for "I don't take these patients seriously and it is a psychological disease."

Yes.
I get worried when there is too much focus on there not being an injury/pain response is disproportionate. It can lead too much to mind over matter claims (like LP) - that you can fight it with a different attitude or ignoring your symptoms. In ME/CFS, I think abnormal things can be going on in muscles as research by Newton showing increased acid after exercise, shows.

Another thing that makes me leery of Clauw is:

In his experience, disability should avoided if at all possible and he noted that often he sees a patient slide downhill after getting disability. He noted that private insurance usually runs out after two years and SSDI usually provides much less than the person is currently earning - leaving the person with more financial problems.

However, it is good to see somebody interested in an array of approaches including an array of drug approaches including some new ones. And in general an interesting article by Cort.

 

I suspect he's on the right track here but by focusing largely on pain and fatigue I fear he may be missing overlaps with a much wider range of conditions and diseases which feature a problem with sensory overload. There also doesn't appear to be much consideration of the inflammatory immune pattern, oxidative stress and mitochondrial dysfunction which have reasonably strong research support and which may be a key driver.

The disability comments do worry me. No-one would dispute that surviving on disability benefits can be soul destroying but such comments are coming close to the 'illness duration is correllated with receipt of benefits' line that we often hear. Existing on benefits is not a choice but something that has been forced on us after many years in some cases of flogging a dead horse and to continue would just make things worse (if you can get worse than a dead horse!). Perhaps he is getting at the inflexibility of sickness benefits were you are either sick or able to work with no grey area in between and no consideration given to relapsing illnesses. No-one would argue, and it would be nice if you didn't have to 'prove that you are ill' just because a very small minority abuse the system. But in the current climate governments of all persuasions are largely interested in cutting welfare bills rather than creating a better system.

Rant over. I look forward to how this and the Drs Light work develops.

 

I think he misses alot of features in these conditions like ongoing infections with immune abnormalities and also a biggy that he missed is many snri's are not well tolerated by cfs/me patients. It sounds like his studies are probably supported by the makers of cymbalta or some other medication many of us wouldnt tolerate. I appreciate he's looking into these pain syndromes but what he is looking at i think is something different to cfs/me with pain/fibro. Sounds more like a general neuralgia.

 

"Placebo Effect - Dr. Clauw is big on non-pharmacological approaches to these disorders. He believes their value is minimized in clinics but time and time again they have been shown to be helpful. In his experience, people who have successfully dealt with FM or CFS have all used these techniques and they tend to work better than pharmacological treatments. His online guide to Fibromyalgia contains 10 self-management (i.e. behavioral) modules. (Lynne Matallana, the founder of the National Fibromyalgia Association, successfully used them to treat her FM.) He stated the trend in FM toward using these techniques is being mirrored in such disorders as diabetes, asthma, COPD and others."

I once had a doctor who prescribed me such a low dose of codeine that it was useless. Not to mention codeine makes me vomit which is in my chart. He told me it was something else that was much stronger. I remained in quite a bit of pain the entire time I saw him and wondered why I was nauseous and vomiting more often. Beware of someone who says they like the placebo effect. I think that is just code for "I don't take these patients seriously and it is a psychological disease."

I personally have found that Tramadol (an opiate) works the best for fibromyalgia pain. Without it I cannot function. I hear the same from many people with fibromyalgia. Thus, I am not buying the story that opiates don't work or make things worse. They do work. I get very nervous when so called experts talk about how we shouldn't be using them. That would leave a lot of people more disabled then they are now. As he said, nothing works 100% for fibromyalgia pain.

Amen. I have serious doubts about this guy's entire approach. YES, there is a central nervous system component. Duh. But a sudden onset, flu-like illness that doesn't go away is not explained by his observations. The idea that something has damaged my CNS makes sense, but doesn't explain what happened in the first place to cause it. Codeine not only helps with the pain, it just makes me FEEL BETTER in general. It is aggravating to hear someone say "put down the opiates and pick up the marijuana pipe". I know MJ helps a lot of people, but it's nearly impossible to get and expensive even in places where medical mj is legal.

Opiates have serious drawbacks, but their efficacy for some of us cannot be dismissed. Codeine is cheap and it works.



I found myself becoming more and more annoyed the more I read.

 

Interesting stuff, and a very good write up, Cort. Thanks for that.

Good to see somebody in the medical establishment standing up for the medical benefits of cannabis.

I do have to nitpick two points from Clauw about it though.

Firstly, the risks of serious lung disease from smoked cannabinoids is more-or-less statistically nil.

"Our results may have been affected by selection bias or error in measuring lifetime exposure and confounder histories; but they suggest that the association of these cancers [of the mouth, throat and airways] with marijuana, even long-term or heavy use, is not strong and may be below practically detectable limits."
http://www.ncbi.nlm.nih.gov/pubmed/17035389

"Given the consistently reported absence of an association between use of marijuana and abnormal diffusing capacity or signs of macroscopic emphysema, we can be close to concluding that smoking marijuana by itself does not lead to COPD."
http://www.ncbi.nlm.nih.gov/pubmed/19364782

Nonetheless, there are unquestionably much safer methods of delivery, particularly tincture (applied sub-lingual or dermal), and inhaling vapourised canabinoids.

Secondly, it is true that there is a statistical risk of developing schizophrenia associated with using cannabis before about 18-20 years of age. But as I understand it, it is also true that the risk is quite small, and really only applies to the section of the teenage population already at risk for developing schizophrenia. (Which is not to downplay the potentially serious consequences of developing the disorder.)

Thanks Shawn, I have tried medical marijuana in candy form and for me it was a great sleep aid - very relaxing. My girlfriend swears by it for her severe back problems; its the best thing she uses for pain. (She bombed out on tramadol and other opioids - she fits Clauws central pain patient quite well; she has big structural problems plus the added on Central Pain problem and she uses Cymbalta to help her sleep; its an excellent sleep aid for her. ). I'm going to do an article on medical marijuana pretty soon.

 

Thanks for another interesting article Cort - very interesting to see specific area(s) of the brain thought involved. Central pain syndrome (damage to the CNS) was very evident to my Docs from uncoordinated and difficult movement (even without pain) - demyelisation the chief suspect, but that is allowed for in this model.

(High dose Gabapentin did marvels for a while)

Ever tried Cymbalta? These drugs are only so effective but my girlfriend swears by it.

We're going to see more emphasis on these same brain areas in the Brain Overview from the conference. Its fascinating stuff!

 

"Placebo Effect - Dr. Clauw is big on non-pharmacological approaches to these disorders. He believes their value is minimized in clinics but time and time again they have been shown to be helpful. In his experience, people who have successfully dealt with FM or CFS have all used these techniques and they tend to work better than pharmacological treatments. His online guide to Fibromyalgia contains 10 self-management (i.e. behavioral) modules. (Lynne Matallana, the founder of the National Fibromyalgia Association, successfully used them to treat her FM.) He stated the trend in FM toward using these techniques is being mirrored in such disorders as diabetes, asthma, COPD and others."

I once had a doctor who prescribed me such a low dose of codeine that it was useless. Not to mention codeine makes me vomit which is in my chart. He told me it was something else that was much stronger. I remained in quite a bit of pain the entire time I saw him and wondered why I was nauseous and vomiting more often. Beware of someone who says they like the placebo effect. I think that is just code for "I don't take these patients seriously and it is a psychological disease."

I personally have found that Tramadol (an opiate) works the best for fibromyalgia pain. Without it I cannot function. I hear the same from many people with fibromyalgia. Thus, I am not buying the story that opiates don't work or make things worse. They do work. I get very nervous when so called experts talk about how we shouldn't be using them. That would leave a lot of people more disabled then they are now. As he said, nothing works 100% for fibromyalgia pain.

I disagree about that bit of 'code' and I don't think it could over power the negative effects of a drug that your body does not agree with. I also recognize that it can only so far - as he states. For the first 10 years I was ill I had some doctors who I believed in, were confident they could help me and yet nothing they did had the slightest effect on my symptoms. I think it may help for some people at some stages of their illnesses and not others.

I agree with you about the opiates. My guess is that Clauw is essentially correct about the effectiveness of opiates in people with FM/CFS but there are definitely exceptions; you are one and I've heard of others.

 

Yes.
I get worried when there is too much focus on there not being an injury/pain response is disproportionate. It can lead too much to mind over matter claims (like LP) - that you can fight it with a different attitude or ignoring your symptoms. In ME/CFS, I think abnormal things can be going on in muscles as research by Newton showing increased acid after exercise, shows.

Another thing that makes me leery of Clauw is:

However, it is good to see somebody interested in an array of approaches including an array of drug approaches including some new ones. And in general an interesting article by Cort.

He does have some controversial ideas. Clauw is very big on 'functionality' - my take on what he said was that he would probably prefer a more functional patient who is working than someone who is perhaps in a bit less pain who is not working (but that is my take).

Clauw doesn't suggest that mindfullness therapies can take away the symptoms - they are, like drugs, another tool in the toolkit. One of his slides noted a study which resulted, as I remember, in 20-30% reduction in symptom severity. My guess is that that's about where he comes out on that.

 

I think he misses alot of features in these conditions like ongoing infections with immune abnormalities and also a biggy that he missed is many snri's are not well tolerated by cfs/me patients. It sounds like his studies are probably supported by the makers of cymbalta or some other medication many of us wouldnt tolerate. I appreciate he's looking into these pain syndromes but what he is looking at i think is something different to cfs/me with pain/fibro. Sounds more like a general neuralgia.

He's coming from a very different field. There's not alot of immune research in FM and almost no pathogen research (if any?). CFS brings a much different emphasis to the FM/IBS, Interstitial cytisus (I believe I got that wrong again ) fields and its going to be really interesting to see if these other disciplines start to pick up some CFS topics. Will these 'central pain' conditions start looking at herpesviruses? How about the blood vessel/blood circulation problems? What about orthostatic intolerance? Clauw did note how surprised he was at the role the immune plays in producing pain; I think they're just beginning to delve into that.

The Lights are in a really nice position here; he spent decades in the pain field and now he's becoming a kind of bridge between it and CFS.

 

He does have some controversial ideas. Clauw is very big on 'functionality' - my take on what he said was that he would probably prefer a more functional patient who is working than someone who is perhaps in a bit less pain who is not working (but that is my take).

I'm really concerned by the difficulty in measuring, or even meaningfully defining, 'functionality' - it leaves a lot of room for vested interests or misguided paternalists to manipulate our understanding of what is 'best' for patients, or restricting the range of freedoms seen as legitimate for those suffering from chronic health-problems. eg: The classing as 'dysfunctional' of the belief that recovery is not under personal control for CFS patients.

After seeing the way CFS has been treated, and having experienced some of the problems it has caused myself, I don't trust doctors to improve my functionality... I just want them to provide me with as much accurate information as they can, and then leave me to decide what to do with it.

 

I suspect he's on the right track here but by focusing largely on pain and fatigue I fear he may be missing overlaps with a much wider range of conditions and diseases which feature a problem with sensory overload. There also doesn't appear to be much consideration of the inflammatory immune pattern, oxidative stress and mitochondrial dysfunction which have reasonably strong research support and which may be a key driver.

As I noted in another comment - it'l be interesting, as these different conditions talk more and more to one another - how some of the CFS research (oxidative stress, mitochondrial) bleeds into these other conditions. The UK is now doing some mitochondrial research.