Is Fibromyalgia A Danger to Chronic Fatigue Syndrome (ME/CFS)?

Cort

Founder of Health Rising and Phoenix Rising
Staff member
[fright]
Natelson_Ben.jpg
[/fright]Dr. Natelson has been absorbed by the differences between chronic fatigue syndrome (ME/CFS) and fibromyalgia for quite some time. In fact, one could say that Natelson is absorbed by differences.

He is equally interested between the differences between people with ME/CFS and those with ME/CFS and FM. He's also fascinated by the differences between ME/CFS patients who have and don't have depression. He has, for instance, found that ME/CFS patients without depression have more neurological abnormalities than ME/CFS patients with depression.

In short, Natelson is something of a splitter. He believes in precision and abhors lumping diseases or subsets of diseases together.

His emphasis on splitting is not just philosophical, though. Natelson has been around long enough to know a disturbing trend line when he sees one. He believes that the increasing emphasis on broadening the diagnostic criteria for fibromyalgia could have very negative consequences both for it and for ME/CFS.

He's out to put a stop to this lumping trend, and he recently penned a review to that end. In it he examined studies which compared the two diseases. Not many comparative studies have been done but the some differences have emerged.

QJM. 2013 Jan;106(1):3-9. doi: 10.1093/qjmed/hcs156. Epub 2012 Aug 26. Is chronic fatigue syndrome the same illness as fibromyalgia: evaluating the 'single syndrome' hypothesis. Abbi B1, Natelson BH.

Differences Between Fibromyalgia and Chronic Fatigue Syndrome

FM
  • Growth hormone problems present in FM
  • Normal or increased cortisol relative to ME/CFS
  • Plasma melatonin levels higher in FM
  • RNase L protein not unusually fragmented
  • Less abnormal gene expression responses to exercise plus increased expression of ion channel genes at baseline. (Light studies)
  • Autonomic nervous system - both diseases have low HRV variability but more extensive studies revealed FM patients have higher blood pressure during tilt than controls or ME/CFS patients. ME/CFS and FM patients and healthy controls all have different "hemo-instability indices".
  • Electrophoretic analysis of urine produces different biomarkers in the two diseases.
ME/CFS
  • Growth hormone problems probably not present
  • Decreased cortisol production particularly in morning.
  • Increased fragmentation of RNase L protein
  • Highly abnormal gene expression increased expression of sensory, adrenergic and immune genes in response to exercise (Light studies)
  • Autonomic nervous system - both have low HRV variability, but more extensive studies suggest that combined heart rate and blood pressure results are quite different.
  • Electrophoretic analysis of urine produces different biomarkers in the two diseases.
Getting Captured by Fibromyalgia?

Natelson believes that the 2010 diagnostic for criteria for FM (still listed as preliminary) essentially removes the distinction between ME/CFS and FM. Under those criteria many ME/CFS patients can and probably are being diagnosed as having fibromyalgia. (A DePaul study suggests that over 50% would be.) That could, over the long term, possibly lead to the disappearance or diminishment of ME/CFS as a separate disease.

The 2010 ACR criteria for FM are the picture of simplicity:
  1. Widespread pain index (WPI) > or + to 7 and a symptom severity score > or = to 5, or a widespread pain index from 3-6 and a symptom severity score > or = to 9.
  2. Symptoms have been present at a similar level for at least 3 months.
  3. The patient does not have a disorder that would otherwise explain the pain.
The symptom severity score covers just three symptoms: fatigue, waking unrefreshed, cognitive symptoms plus somatic symptoms in general.

[fleft]
Hunting_tiger.JPG
[/fleft]Sharing similar symptoms with a much larger disease could be problematic if the two diseases are not precisely differentiated. Not only is fibromyalgia much more prevalent than ME/CFS (10 million people- - 1 million in the U.S), but the FDA approved drugs for it and the commercials featuring those drugs means that virtually everyone has heard of fibromyalgia.

Because doctors are much more familiar with FM than ME/CFS they are more likely, if given the chance, to diagnose a patient with FM. The ACR 2010 criteria gives doctors that chance.

The broad diagnostic criteria for FM could, conceivably, create a long term challenge to the viability of ME/CFS. If ME/CFS patients keep getting thrown into the FM basket the support for the ME/CFS community could weaken over time.)

In fact, Natelson believes that the less restrictive diagnostic criteria for FM (which has no exclusionary conditions) may be partly responsible for the greatly increased prevalence of FM relative to ME/CFS.

(Notice the different trend lines in the diseases; the ME/CFS diagnostic criteria are getting narrower and more precise over time while the FM diagnostic criteria are getting broader. Ferreting out subsets is at the top of the ME/CFS agenda, but that topic hardly seems to be on radar screens of FM researchers.

In fact, broadening a disease's diagnostic criteria may be unusual in the medical world. The diagnostic criteria for headache, migraine and cancer and many other diseases are continually being refined. That increased precision has paid off in better treatment for patients. Precision medicine - which attempts to place the individual in the context of their disease - is now believed to be the future of medicine.

A Trend Towards Somatization?

The creation of a kind of super-syndrome that results in ME/CFS being put into the FM basket risks, would, Natelson believes, at the very least, result in some patients being diagnosed with having a somatization disorder.

Natelson has found that the diagnosis of a somatization disorder depends entirely on how a doctors interprets a patients symptoms. If a doctor codes them as having a physical origin they get a physical diagnosis, but if a doctor codes the symptoms has having a mental origin, almost 100% of ME/CFS patients are diagnosed as having a somatization disorder.

[fright]
Infection.jpg
[/fright]ME/CFS patients who have "extra symptoms" which don't fit broader diagnostic protocols would be in danger of slipping through the cracks (once again) diagnosed as having a somatization disorder by a psychiatrist. Natelson clearly believes that these unusual symptoms have a physiological origin and that they be explored not dismissed.

In fact, Natelson believes that lumping the two diseases together will make them prone to being diagnosed as somatization disorders. He strongly recommends that the individual differences between the two continue to be teased apart. That will, he believes, lead to a continued focus on finding the pathophysiological causes present in these diseases.

Will Chronic Fatigue Syndrome Lead the Way?

I believe that important insights into the cause of ME/CFS will stop it from being further subsumed into FM. The emphasis on deep molecular analyses to uncover biomarkers and subsets will carry the day, and could even lead to a reassessment of FM. As the biomarkers for ME/CFS emerge, a significant number of people with fibromyalgia will be reclassified as having ME/CFS.

That will require, though, the two research communities finally starting to collaborate. Despite their symptomatic similarities Natelson points out how segregated these diseases have been in the lab. Very few FM researchers study ME/CFS and vice versa. Natelson relayed that when he ran his NIH ME/CFS research center he was actually prohibited from including FM patients in his studies.

The way out of the current jumbled FM and ME/CFS morass, he believes, is to do what the AHRQ study and P2P reports recommended; break up the silo's and regularly include FM and ME/CFS (and other) patients in the same studies. Given the new approach the NIH is taking and the reinvention of the ME/CFS field that is occurring, that will hopefully be done as a matter of course. When that occurs the concerns that ME/CFS will continue to get subsumed into FM will disappear.

A bigger concern, right now, is FM itself; it's still a rich research field but the emphasis in ME/CFS on networking and collaborating to understand the molecular underpinnings of the disease is not present.

With the NIH more and more focused on the problem of pain, FM research should be ascendant but for some reason it's not. Instead, FM is losing its way in the NIH a bit. It's sponsor at the NIH (NIAMS) is almost wholly focused on behavioral disorders. That's almost unthinkable in ME/CFS partially because of the outcry it would raise in the patient community. This is not to say that there's not a lot of wonderful FM research; there is - but it could be better.

Natelson's editorial highlights a singularly important factor for multi-symptomatic, poorly understood diseases like ME/CFS and FM that can all too easily be shoved into a psychological box because they don't fit standard categories: precision is key and lumping is out.
 
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Tamesin

New Member
I've had a consistent problem with this, particularly among specialists who treat my other health problems. I say to them, "I'm worried about how this surgery/treatment will affect my CFS," and they say, "I don't think it will have any impact on your Fibromyalgia at all."

When I ask them, they think CFS and Fibromyalgia are the same illness (I actually have both, and I can tell the difference between the two myself), and they ask my why I"m not taking Lyrica (because I don't tolerate meds due to my CFS) and why I'm not exercising for my Fibromyalgia (because of exercise intolerance in CFS).

My docs who treat my CFS are very frustrated by the prevalence of Fibromyalgia diagnosis, and they feel that CFS is being considered not a separate or real diagnosis, because of the number of people being diagnosed with Fibromyalgia (and they all have had quite a few patients who were diagnosed with Fibromyalgia inaccurately, they felt).

Again, I have both illnesses. But I find that I have to omit telling specialists that I have Fibromyalgia, or that's all they see me as, and they discount the CFS.

Incredibly frustrating.
 
Last edited by a moderator:

Carollynn

Active Member
Thanks Cort, and great follow up to the previous article about FM and exercise. I've been prompted to think about FM lately because of increased pain in my neck, shoulders, and upper arms.

I'm wondering how many of us with POTS/NMH other OI issues, end up with this kind of pain--and perhaps are then wrongfully diagnosed with FM--because of our posture. Not to criticize us for slumping in the least: I believe we do it not only because of being unrested and unwell but also because keeping the head at the same level as the heart minimizes the heart issues.


Twelve+ years of this has surely had an impact on my bones and muscles. Over the last year I've taken all of the right medical steps: X-rays (some arthritis), chiropractic adjustments, massage, physical therapy, meditating, yoga, finally muscle relaxants, pain killers.

These last two concerned me, so I've gone off of them and am addressing every postural issue I can: neck supports, shoulder harness, ice, "new" pillow (a re-purposed decorative roll I've had for 15 years!), and an eye exam for better glasses.

I've put my laptop back on a desk, with a prop under it so that I'm seated upright, ergonomically safer.

Using a heart rate monitor every day as I do, I can see that I bump past my anaerobic threshold sooner in this upright position--which is also not good. But otherwise I'm on a road that leads to more pills and maybe a surgery. It's worth trying another route. It may not be such a bad thing to spend less time on my computer.

There are many reasons why us ME/CFS patients have laptops that we use while semi-reclining and I understand for many there is simply no other way to be on-line or in any sense of community.

But I do wonder if others have suspected their "FM" might be more a result of mechanical injuries secondary to ME/CFS. I also wonder if any of the soon-to-be-centers-of-excellence address these issues for their patients.
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
Well, that's the reason I think that the IOM report and the renewed emphasis on ME/CFS at the NIH is very important. ME/CFS can be overshadowed by FM particularly at the doctors office.

I think strong findings coming out of the NIH and other efforts will help differentiate ME/CFS and allow it to stand on its own two feet. Studies that include ME/CFS and FM patients in them will further illuminate where the two diseases are similar and are separate.

I'm really surprised that there's not more focus in FM on differentiating the subsets in it; when you have a pretty vague definition that fits 10 million or more people there simply have to be subsets - yet there's little focus on that.


I've had a consistent problem with this, particularly among specialists who treat my other health problems. I say to them, "I'm worried about how this surgery/treatment will affect my CFS," and they say, "I don't think it will have any impact on your Fibromyalgia at all." When I ask them, they think CFS and Fibromyalgia are the same illness (I actually have both, and I can tell the difference between the two myself), and they ask my why I"m not taking Lyrica (because I don't tolerate meds due to my CFS) and why I'm not exercising for my Fibromyalgia (because of exercise intolerance in CFS). My docs who treat my CFS are very frustrated by the prevalence of Fibromyalgia diagnosis, and they feel that CFS is being considered not a separate or real diagnosis, because of the number of people being diagnosed with Fibromyalgia (and they all have had quite a few patients who were diagnosed with Fibromyalgia inaccurately, they felt). Again, I have both illnesses. But I find that I have to omit telling specialists that I have Fibromyalgia, or that's all they see me as, and they discount the CFS. Incredibly frustrating.
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
Thanks Cort, and great follow up to the previous article about FM and exercise. I've been prompted to think about FM lately because of increased pain in my neck, shoulders, and upper arms.

I'm wondering how many of us with POTS/NMH other OI issues, end up with this kind of pain--and perhaps are then wrongfully diagnosed with FM--because of our posture. Not to criticize us for slumping in the least: I believe we do it not only because of being unrested and unwell but also because keeping the head at the same level as the heart minimizes the heart issues.


Twelve+ years of this has surely had an impact on my bones and muscles. Over the last year I've taken all of the right medical steps: X-rays (some arthritis), chiropractic adjustments, massage, physical therapy, meditating, yoga, finally muscle relaxants, pain killers.

These last two concerned me, so I've gone off of them and am addressing every postural issue I can: neck supports, shoulder harness, ice, "new" pillow (a re-purposed decorative roll I've had for 15 years!), and an eye exam for better glasses.

I've put my laptop back on a desk, with a prop under it so that I'm seated upright, ergonomically safer.

Using a heart rate monitor every day as I do, I can see that I bump past my anaerobic threshold sooner in this upright position--which is also not good. But otherwise I'm on a road that leads to more pills and maybe a surgery. It's worth trying another route. It may not be such a bad thing to spend less time on my computer.

There are many reasons why us ME/CFS patients have laptops that we use while semi-reclining and I understand for many there is simply no other way to be on-line or in any sense of community.

But I do wonder if others have suspected their "FM" might be more a result of mechanical injuries secondary to ME/CFS. I also wonder if any of the soon-to-be-centers-of-excellence address these issues for their patients.
That's another question - how much of a role do mechanical injuries due to postural problems that result from blood flow problems - play in these diseases. That's a question that a primarily FM doctor who is not accustomed to the kind of debility that can occur in ME/CFS might not think about.
 
I've had a consistent problem with this, particularly among specialists who treat my other health problems. I say to them, "I'm worried about how this surgery/treatment will affect my CFS," and they say, "I don't think it will have any impact on your Fibromyalgia at all."

When I ask them, they think CFS and Fibromyalgia are the same illness (I actually have both, and I can tell the difference between the two myself), and they ask my why I"m not taking Lyrica (because I don't tolerate meds due to my CFS) and why I'm not exercising for my Fibromyalgia (because of exercise intolerance in CFS).

My docs who treat my CFS are very frustrated by the prevalence of Fibromyalgia diagnosis, and they feel that CFS is being considered not a separate or real diagnosis, because of the number of people being diagnosed with Fibromyalgia (and they all have had quite a few patients who were diagnosed with Fibromyalgia inaccurately, they felt).

Again, I have both illnesses. But I find that I have to omit telling specialists that I have Fibromyalgia, or that's all they see me as, and they discount the CFS.

Incredibly frustrating.
I have similar situations in that I have both disorders also. I was diagnosed with FM when it was called Fibrocitis, then finally got a "real name." Years later I was diagnosed with ME/CFS. I wasn't sure what to believe until I began to notice the differences like you. But it is so true that if we mention FM to a doc, all problems are blamed on it. What a convenient way to diagnose, and then usually under treat.

I cannot take exercise, yet I am told to, and same with some of the meds. I do appreciate my docs never putting me on Lyrica or other new drugs, however. Having just weaned myself off Neurontin (which is in Lyrica), I've finally found that it does not help pain for me. I was originally put on that for RLS, which was years before it was used for nerve pain, but now I am on high-dose opioids and a lot of magnesium citrate, so I felt the Neurontin should be dropped.


Over the years I developed active and progressive RA, Lupus, Raynauds and DDD with sciatica, spinal stenosis and scoliosis. Thus the opioids.

But I have been waiting a long time for an article like this, and I thank the author for his research and devotion. There are still docs out there who do not believe FM exists. Few of them come out and say it anymore; its exposure and testimonials have given it validity, and patients are to be thanked too, for sticking with their guns and not giving in.

We hurt, we don't feel good, we have little energy and most of us have a few other diseases, especially as time goes by and all of a sudden you find you're 63 years old.

The bucket list is pretty full!
 
Last edited by a moderator:

Cort

Founder of Health Rising and Phoenix Rising
Staff member
I have similar situations in that I have both disorders also. I was diagnosed with FM when it was called Fibrocitis, then finally got a "real name." Years later I was diagnosed with ME/CFS. I wasn't sure what to believe until I began to notice the differences like you. But it is so true that if we mention FM to a doc, all problems are blamed on it. What a convenient way to diagnose, and then usually under treat.

I cannot take exercise, yet I am told to, and same with some of the meds. I do appreciate my docs never putting me on Lyrica or other new drugs, however. Having just weaned myself off Neurontin (which is in Lyrica), I've finally found that it does not help pain for me. I was originally put on that for RLS, which was years before it was used for nerve pain, but now I am on high-dose opioids and a lot of magnesium citrate, so I felt the Neurontin should be dropped.

Over the years I developed active and progressive RA, Lupus, Raynauds and DDD with sciatica, spinal stenosis and scoliosis. Thus the opioids.


But I have been waiting a long time for an article like this, and I thank the author for his research and devotion. There are still docs out there who do not believe FM exists. Few of them come out and say it anymore; its exposure and testimonials have given it validity, and patients are to be thanked too, for sticking with their guns and not giving in.

We hurt, we don't feel good, we have little energy and most of us have a few other diseases, especially as time goes by and all of a sudden you find you're 63 years old.

The bucket list is pretty full!
Yes the bucket list is still very full isn't it...VERY FULL (lol)
 

Folk

Well-Known Member
I always wonder if I have both or just Fibromyalgia.
Pain has always been my greatest trouble.
Since the big crash (and only crash I ever had in 9 years) I had in the end of 2014 I develop fatigue, light/noise sensitivities, brain fog, PEM.

Everything got a lot better through 2015, I don't think I have PEM anymore and I don't crash due to exertion. Light and noise sensitivities went away (at least from what I think is "normal") and brain fog only occurs rarely. But the pain and fatigue are still here.

I was diagnosed with both by different doctors and Dr. Kaufman said I had a pretty clear case of CFS... He didn't mantioned FM though. I asked and as far as I could understand he thinks they're both ends of the same spectrum.

Still I keep getting myself thinking what do I really have from time to time.
 
[fright] View attachment 1648 [/fright]Dr. Natelson has been absorbed by the differences between chronic fatigue syndrome (ME/CFS) and fibromyalgia for quite some time. In fact, one could say that Natelson is absorbed by differences.

He is equally interested between the differences between people with ME/CFS and those with ME/CFS and FM. He's also fascinated by the differences between ME/CFS patients who have and don't have depression. He has, for instance, found that ME/CFS patients without depression have more neurological abnormalities than ME/CFS patients with depression.

In short, Natelson is something of a splitter. He believes in precision and abhors lumping diseases or subsets of diseases together.

His emphasis on splitting is not just philosophical, though. Natelson has been around long enough to know a disturbing trend line when he sees one. He believes that the increasing emphasis on broadening the diagnostic criteria for fibromyalgia could have very negative consequences both for it and for ME/CFS.

He's out to put a stop to this lumping trend, and he recently penned a review to that end. In it he examined studies which compared the two diseases. Not many comparative studies have been done but the some differences have emerged.

QJM. 2013 Jan;106(1):3-9. doi: 10.1093/qjmed/hcs156. Epub 2012 Aug 26. Is chronic fatigue syndrome the same illness as fibromyalgia: evaluating the 'single syndrome' hypothesis. Abbi B1, Natelson BH.

Differences Between Fibromyalgia and Chronic Fatigue Syndrome

FM
  • Growth hormone problems present in FM
  • Normal or increased cortisol relative to ME/CFS
  • Plasma melatonin levels higher in FM
  • RNase L protein not unusually fragmented
  • Less abnormal gene expression responses to exercise plus increased expression of ion channel genes at baseline. (Light studies)
  • Autonomic nervous system - both diseases have low HRV variability but more extensive studies revealed FM patients have higher blood pressure during tilt than controls or ME/CFS patients. ME/CFS and FM patients and healthy controls all have different "hemo-instability indices".
  • Electrophoretic analysis of urine produces different biomarkers in the two diseases.
ME/CFS
  • Growth hormone problems probably not present
  • Decreased cortisol production particularly in morning.
  • Increased fragmentation of RNase L protein
  • Highly abnormal gene expression increased expression of sensory, adrenergic and immune genes in response to exercise (Light studies)
  • Autonomic nervous system - both have low HRV variability, but more extensive studies suggest that combined heart rate and blood pressure results are quite different.
  • Electrophoretic analysis of urine produces different biomarkers in the two diseases.
Getting Captured by Fibromyalgia?

Natelson believes that the 2010 diagnostic for criteria for FM (still listed as preliminary) essentially removes the distinction between ME/CFS and FM. Under those criteria many ME/CFS patients can and probably are being diagnosed as having fibromyalgia. (A DePaul study suggests that over 50% would be.) That could, over the long term, possibly lead to the disappearance or diminishment of ME/CFS as a separate disease.

The 2010 ACR criteria for FM are the picture of simplicity:
  1. Widespread pain index (WPI) > or + to 7 and a symptom severity score > or = to 5, or a widespread pain index from 3-6 and a symptom severity score > or = to 9.
  2. Symptoms have been present at a similar level for at least 3 months.
  3. The patient does not have a disorder that would otherwise explain the pain.
The symptom severity score covers just three symptoms: fatigue, waking unrefreshed, cognitive symptoms plus somatic symptoms in general.

[fleft]View attachment 1649 [/fleft]Sharing similar symptoms with a much larger disease could be problematic if the two diseases are not precisely differentiated. Not only is fibromyalgia much more prevalent than ME/CFS (10 million people- - 1 million in the U.S), but the FDA approved drugs for it and the commercials featuring those drugs means that virtually everyone has heard of fibromyalgia.

Because doctors are much more familiar with FM than ME/CFS they are more likely, if given the chance, to diagnose a patient with FM. The ACR 2010 criteria gives doctors that chance.

The broad diagnostic criteria for FM could, conceivably, create a long term challenge to the viability of ME/CFS. If ME/CFS patients keep getting thrown into the FM basket the support for the ME/CFS community could weaken over time.)

In fact, Natelson believes that the less restrictive diagnostic criteria for FM (which has no exclusionary conditions) may be partly responsible for the greatly increased prevalence of FM relative to ME/CFS.

(Notice the different trend lines in the diseases; the ME/CFS diagnostic criteria are getting narrower and more precise over time while the FM diagnostic criteria are getting broader. Ferreting out subsets is at the top of the ME/CFS agenda, but that topic hardly seems to be on radar screens of FM researchers.

In fact, broadening a disease's diagnostic criteria may be unusual in the medical world. The diagnostic criteria for headache, migraine and cancer and many other diseases are continually being refined. That increased precision has paid off in better treatment for patients. Precision medicine - which attempts to place the individual in the context of their disease - is now believed to be the future of medicine.

A Trend Towards Somatization?

The creation of a kind of super-syndrome that results in ME/CFS being put into the FM basket risks, would, Natelson believes, at the very least, result in some patients being diagnosed with having a somatization disorder.

Natelson has found that the diagnosis of a somatization disorder depends entirely on how a doctors interprets a patients symptoms. If a doctor codes them as having a physical origin they get a physical diagnosis, but if a doctor codes the symptoms has having a mental origin, almost 100% of ME/CFS patients are diagnosed as having a somatization disorder.

[fright]View attachment 1650 [/fright]ME/CFS patients who have "extra symptoms" which don't fit broader diagnostic protocols would be in danger of slipping through the cracks (once again) diagnosed as having a somatization disorder by a psychiatrist. Natelson clearly believes that these unusual symptoms have a physiological origin and that they be explored not dismissed.

In fact, Natelson believes that lumping the two diseases together will make them prone to being diagnosed as somatization disorders. He strongly recommends that the individual differences between the two continue to be teased apart. That will, he believes, lead to a continued focus on finding the pathophysiological causes present in these diseases.

Will Chronic Fatigue Syndrome Lead the Way?

I believe that important insights into the cause of ME/CFS will stop it from being further subsumed into FM. The emphasis on deep molecular analyses to uncover biomarkers and subsets will carry the day, and could even lead to a reassessment of FM. As the biomarkers for ME/CFS emerge, a significant number of people with fibromyalgia will be reclassified as having ME/CFS.

That will require, though, the two research communities finally starting to collaborate. Despite their symptomatic similarities Natelson points out how segregated these diseases have been in the lab. Very few FM researchers study ME/CFS and vice versa. Natelson relayed that when he ran his NIH ME/CFS research center he was actually prohibited from including FM patients in his studies.

The way out of the current jumbled FM and ME/CFS morass, he believes, is to do what the AHRQ study and P2P reports recommended; break up the silo's and regularly include FM and ME/CFS (and other) patients in the same studies. Given the new approach the NIH is taking and the reinvention of the ME/CFS field that is occurring, that will hopefully be done as a matter of course. When that occurs the concerns that ME/CFS will continue to get subsumed into FM will disappear.

A bigger concern, right now, is FM itself; it's still a rich research field but the emphasis in ME/CFS on networking and collaborating to understand the molecular underpinnings of the disease is not present.

With the NIH more and more focused on the problem of pain, FM research should be ascendant but for some reason it's not. Instead, FM is losing its way in the NIH a bit. It's sponsor at the NIH (NIAMS) is almost wholly focused on behavioral disorders. That's almost unthinkable in ME/CFS partially because of the outcry it would raise in the patient community. This is not to say that there's not a lot of wonderful FM research; there is - but it could be better.

Natelson's editorial highlights a singularly important factor for multi-symptomatic, poorly understood diseases like ME/CFS and FM that can all too easily be shoved into a psychological box because they don't fit standard categories: precision is key and lumping is out.
 
The only criteria that I can relate to is in the "M E International Consensus Primer -2012-11-26". I have never been diagnosed with FM, do not have constant muscle pain but only during and after exercise. After listening to people who have been diagnosed with FM, I agree that the two are very different and should not be confused. Linking ME/CFS with FM is detrimental to ever obtaining clarity of ME/CFS cause, diagnosis or treatment. Having had ME for over 30 years in differing stages of severity, off work for 2 years in the mid 80's, now much improved, I have learned to live with it. Crashes yes, still, but there is always a reason related to food, chemicals or medication. What is the cause of extreme multiple sensitivity and immune dysfunction? I hope for the sake of all ME sufferers that they find out soon.
 

Cecelia

Active Member
Never forget the long, wasted years of CFS being conflated with Depression and how meds and treatments considered appropriate for CFS were really only appropriate for Depression--namely, CBT and GET, and so often nothing but anti-depressants pushed at us. Those treatments were harmful more often than not. I have been struck by the stupidity of this conflation for ages and all because of a loose, overly broad definition.

Can you imagine philosophers ever having a discussion without first defining their terms? Can you imagine people playing a game without first making clear a set of rules? Can you imagine running a race without a track or boundaries? But that has been our past, and if this conflation between FM and CFS continues, our most unfortunate future. To me, lumping together conditions which have shown signs of distinction is unscientific and irresponsible--or if you prefer the more common terms--both lazy and very stupid.

Thank you, Dr. Natelson, and thank you, Cort, for bringing this up!
 

Seeksassy

Active Member
I was diagnosed with FM in 1996 and was back to work full-time by '99. I managed quite well for almost 10 years with maybe 2 or 3 short flares (2-7 days) per yr. I had by 99 learned the wonders of pacing! Something changed around 2009-10 and I now struggled to work full-time. I have been totally off work since Jan 2013, and it was me that suggested to my GP that I may have CFS. She considers them "cousins" which I find a little frustrating because I think I can distinguish between them. It can be a little confusing, e.g. exercise did help my FM (carefully paced) but now it can knock me out. I had bouts of severe fatigue in the early years of FM, but now it's almost constant. Now it's like pacing on steroids!! Yes, I know that's kind of an oxymoron....
 

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