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

 

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.

These herpes viruses are know to sit in the nerves, so we do need some help there, i just think most cfsers are too sensitive to most meds that effect serotonin and noradrenaline. Maybe they need to start testing neurotransmitter levels alot more??I think meds in the class of lyrica and neurontin are more helpful for cfs as they have a more calming effect on the nervous system, but then again some are sensitive to them but i dont theink as much as AD's, but the more that are made the more we have to pick from and find something that works. One thing i think they should look into for cfs patients in reguards to ad's are making alot lower dose pills, maybe a 1/4 to an 1/8 of the strength of what is used in depression, maybe this can be more helpful in cfs patients, just a thought.

One last thing i would like to see them invent/make more effective sleep meds, improving sleep improves pain threshold as well as all symptoms in cfs.

cheers!!!

 

I'm usually skeptical of claims that FM/CFS have the same underlying pathology (or even more far fetched claims such as CFS/Autism).

There is clearly centrally dysregulated responses to activity, that causes the fatigue in CFS and the pain in FM and other conditions, but isn't the interesting bit on what caused that dysregulation in the first place? The underlying reasons might be different even within the CFS umbrella. Merely taking pain killers doesn't increase concentration, nor reduce fatigue in ME/CFS.

Secondly, blaming it all on 'stress' is all a bit vague without actually having a demonstrable biological model.

In his experience, disability should avoided if at all possible and he noted that often he sees a patient slide downhill after getting disability.

Cause or effect? Increased severity is associated with worse outcomes. Increased severity is also associated with applying for disability support. The conclusion therefore is a non sequitur.

 

Since disability benefits will only make me sicker perhaps the good doctor would care to make a regular donation to the 'jimells fund'? Or perhaps he has some ideas on how a person can live in the U.S. on no income??

I hope people reading this overall informative essay will think very carefully before trying Cymbalta. After a few weeks on the stuff I developed a hypertensive crisis and an ice-pick headache so bad, I don't know any words to describe that level of pain. Cymbalta has caused huge problems, including death, for a lot of people:

http://www.counterpunch.org/2009/02/18/it-s-the-cymbalta-stupid/

Lyrica and neurontin also have poor reputations.

There seems to be a national campaign against opioids. Where I live, it's almost impossible to get prescriptions for any kind of pain medication other than NSAIDs. Most doctors refuse to see patients with chronic pain. Anybody who asks for pain relief is a drug addict.

Personally, opioids do nothing for me. No pain relief, no euphoria, no adverse effects. I might as well take a sugar pill. NSAIDs don't do anything either, except maybe cause gut problems. So I just suffer instead. But it doesn't much matter, since I have no money or energy to go anywhere or do anything anyways. And intense pain does tend to relieve boredom, sort of...

 

Since disability benefits will only make me sicker perhaps the good doctor would care to make a regular donation to the 'jimells fund'? Or perhaps he has some ideas on how a person can live in the U.S. on no income??

I hope people reading this overall informative essay will think very carefully before trying Cymbalta. After a few weeks on the stuff I developed a hypertensive crisis and an ice-pick headache so bad, I don't know any words to describe that level of pain. Cymbalta has caused huge problems, including death, for a lot of people:

http://www.counterpunch.org/2009/02/18/it-s-the-cymbalta-stupid/

Lyrica and neurontin also have poor reputations.

There seems to be a national campaign against opioids. Where I live, it's almost impossible to get prescriptions for any kind of pain medication other than NSAIDs. Most doctors refuse to see patients with chronic pain. Anybody who asks for pain relief is a drug addict.

Personally, opioids do nothing for me. No pain relief, no euphoria, no adverse effects. I might as well take a sugar pill. NSAIDs don't do anything either, except maybe cause gut problems. So I just suffer instead. But it doesn't much matter, since I have no money or energy to go anywhere or do anything anyways. And intense pain does tend to relieve boredom, sort of...

Agreed! Clauw pointed out that even the drugs that work are only somewhat effective and there is a huge variation in response to them. The Lights, for instance, are engaged in a Lyrica study in CFS that they hope will help them and (Pfizer) pinpoint better who will respond to it well and who won't. It's the poor responders, and there are plenty of them, that have given Lyrica such a poor reputation... There's alot to learn in this field.

What a shame about cymbalta - opioids don't work for you and neither does Cymbalta - you're not responding to either type of drug. No luck on the drug scene - that's too bad.. I hope you find something.

All these drugs are going to cause problems in some people. I have heard of several people who did really poorly on Rituximab and of course some people have done quite well.

 

I'm usually skeptical of claims that FM/CFS have the same underlying pathology (or even more far fetched claims such as CFS/Autism).

There is clearly centrally dysregulated responses to activity, that causes the fatigue in CFS and the pain in FM and other conditions, but isn't the interesting bit on what caused that dysregulation in the first place? The underlying reasons might be different even within the CFS umbrella. .

FM and CFS are two odd cousins - quite a few similarities and a good number of differences. Are different pathways tweaking a bit different parts of the brain???? Is it just a matter of a slightly different injury? Or are they really quite different? The Brain section of the conference is really interesting in that regard - that is coming up next.

 

Cause or effect? Increased severity is associated with worse outcomes. Increased severity is also associated with applying for disability support. The conclusion therefore is a non sequitur.

Exactly. Nobody I have ever talked to who is on disability support of some kind (for any condition) enjoys it or wants it, it is just the only realistic option they have left. If you can't work (reliably or at all), you can't work, and the financial support has to come from somewhere. Either that or you become homeless.

 

Does Dr Clauw have any thoughts on Low Dose Naltrexone? Could you ask him? I have considered trying it and I know some people have had success with it. I think it might fit in with his thought that there is a problem with the opioid system or not?

 

You'd have to ask him.

It is discussed in the following article (on FM), which was coauthored by him http://www.ncbi.nlm.nih.gov/pubmed/20388527
They discuss the single-blind pilot study and possible mechanisms of how it would work.

In a small pilot trial (singleblind, placebo-controlled) low dose naltrexone, an opioid receptor antagonist, showed a significant reduction in pain, fatigue and stress scores compared to placebo (Younger & Mackey, 2009). Treatment was associated with an increase in mechanical and heat pain thresholds.

Interestingly there is evidence that naltrexone application leads to an ?-opioid receptor up-regulation (Diaz et al., 2002). However, other mechanisms need to be taken into consideration. In neuropathic pain models the notion of spinal microglia activation contributing to pain initiation and maintenance is well established. The exact mechanism by which a peripheral nerve lesion activates spinal microglia is to be fully elucidated. Interestingly opioids can also induce microglia activation through binding to non-stereoslective toll-like receptor 4 (TLR 4) (Watkins et al., 2009). Naltrexone can block TLR 4 signaling and can reverse neuropathic pain behavior in animals (Hutchinson et al., 2008 M.R. Hutchinson, Y. Zhang, K. Brown, B.D. Coats, M. Shridhar and P.W. Sholar, et al. Non-stereoselective reversal of neuropathic pain by naloxone and naltrexone: Involvement of toll-like receptor 4 (TLR4). [Hutchinson et al., 2008] and [Lewis et al., 2010] ). As outlined before the initial pathology in FM is not known, but it is well conceivable that a subgroup of FM suffers from an abnormal interaction between microglia and the nociceptive system. Whether this is confined to the spine or involves supraspinal structures is speculative, especially as microglial activation associated with chronic pain has so far not been demonstrated in humans. However, from this point of view further exploration of opioid agonists and antagonists is warranted.

 

Does Dr Clauw have any thoughts on Low Dose Naltrexone? Could you ask him? I have considered trying it and I know some people have had success with it. I think it might fit in with his thought that there is a problem with the opioid system or not?

It sure seems like it would and I know some people that it really helped and others that got no benefit. Its certainly seems like its worth a try...

 

You'd have to ask him.

It is discussed in the following article (on FM), which was coauthored by him http://www.ncbi.nlm.nih.gov/pubmed/20388527
They discuss the single-blind pilot study and possible mechanisms of how it would work.

Interestingly opioids can also induce microglia activation through binding to non-stereoslective toll-like receptor 4 (TLR 4) (Watkins et al., 2009).

Interesting that opioids can induce microglial activation (ie immune activation) in the brain - which could be reason why in some people with FM they increase sensitivity to pain. Fascinating stuff.

 

How many ways can stress be stressed for our condition?

I'm usually skeptical of claims that FM/CFS have the same underlying pathology (or even more far fetched claims such as CFS/Autism).

There is clearly centrally dysregulated responses to activity, that causes the fatigue in CFS and the pain in FM and other conditions, but isn't the interesting bit on what caused that dysregulation in the first place? The underlying reasons might be different even within the CFS umbrella. Merely taking pain killers doesn't increase concentration, nor reduce fatigue in ME/CFS.

Secondly, blaming it all on 'stress' is all a bit vague without actually having a demonstrable biological model.



Cause or effect? Increased severity is associated with worse outcomes. Increased severity is also associated with applying for disability support. The conclusion therefore is a non sequitur.

I agree with Snow Leopard regarding this business of blaming it all on the stress issue! Nobody was trying to blame stress for my success to earn 2 MBAs, while being an abandoned single parent, and working 2-3 jobs? I never missed a day of work, experienced illness behaviors or had much worse than a common cold when I was living freely prior to this disability illness. But, after the kids are launched, I have all the time to pursue my future with independence and a formidable career I absolutely loved and truly appreciated, then I suddenly get a disabling illness, that physicians fear so much as saying the goofy name they gave it? All because I actually became "stressed-less"? This is no "empty nest syndrome"! It is horrible to watch as the world passes you by year after year, and not accept your reality, while you wait for some science to recognize your misery.


It is difficult to accept opinions by using this type of research to minimize, and essentially deny, the reality of people who have suffered the overwhelming symptoms for 20-30 years (and counting!). I dont understand how the disproportionate high numbers of professionals who has fallen prey to this illness would just wake up one day and decide, Gee, I think I would rather live in near poverty and hope for help if I actually reach homeless status. Nobody at any level of social status would want this lifestyle. It seems almost cruel to put out these comments to a growing cohort of ill people with this disability who have lost so much trying to find adequate relief so they can go back to work the way they wanted to in the first place.

 

Surprise! The Immune System Shows Up - In Spades - the nervous system may play a major role in the development of central pain but that doesnt mean the immune system is not involved. It is, and to a much greater degree than first suspected. Immune cells that were once thought to be rather inert, such as the microglia and the astrocytes, are turning out to play a major role. (Researchers looking for the origins of sickness behavior are focusing on these cells and speculating that they are over-activated in disorders such as ME/CFS.)

Cort,
Is there any correlation between the suggestion of using anti-depressants for pain and other off-label illness with this suggestion of sickness behaviors from the You are all somatic DSM 5 Researchers?


Then there was the interesting sidebar mentioned that the Pharmaceutical Industry is no longer looking to create effective treatments for difficult to treat illnesses? This reminds me of the makers of Provigil several years back, when the original Patent was about to expire. Cephelon decided to do studies for off market use for Schizophrenia. During the study, the cost went up and no other companies could manufacture the product as a generic, because its Patent was being held for the off-market studies. It was later disclosed that Cephelon paid 4 other drug makers to not manufacture their generic versions of Provigil. All of this resulted in two huge fines for Cephelon to the Government, and continued lawsuits between the Pharmaceutical Corporations.

One would wonder how frequently this pattern of sick behaviors are going on, while those in need suffer and wait? The end result is that we folks with difficult to treat illness have to suffer and wait for Pharmaceutical financial gaming to end before we are taken seriously. So, exactly who has the sickness behaviors when people with this illness are begging for answers and their lives depend on the people who have control over our needs?

 

A Question Of Faith

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.

We can't keep playing the "No true Scottsman" card forever. The truth is we don't know what we have, tell me what tests have we all had that outline one illness and one illness only causing all our symptoms that we attribute to CFS/ME?

I for one freely admit that I don't fit into any known respected illness category, it's not what I want to hear but it's the truth. If everytime a pathological construct or illness model is found (and I mean really found not just supposed) and we say, "that's not real CFS", "that's not real Fibromyalgia" then the question will never be answered. The fact is that these labels are being given out when the cause isn't really known, this is occurring whether we like it or not. I wish it wasn't this way but repeating "it ought to..." forever won't help. The fact is that we're all suffering from the abuse of language in the form of what these labels have been synonymized with.

It seems to me that some people here have faith in an illness model, this is a very dangerous thing and we should know this more than anybody else on this planet.

 

re: interstitial cystitis and Dr. Clauw's comment. If one goes to the ICA.org webstite you will see that there has been almost NO research money spent on this disease. 100 million dollars???????????
The Iterstitial Cystitis Association was started by a female surgical resident who couldn't get a dx for pain so severe methadone didn't cut it and was told to "forget being a doctor and just get married." Urology texts said it was a straight psych disorder that crazy woman had.
It's seen very frequently with IBS, FM, and CFS. It was impossible to get a dx thirty five yrs ago when I did: three yrs and thirty seven doctors. And my bladder was hemmorraging and paper thin.