Is CFS the same illness as fibromyalgia: evaluating the ‘single syndrome’ hypothesis (Abbi and Natelson, 2012)

[Pyrrhus]

Is CFS the same illness as fibromyalgia: evaluating the ‘single syndrome’ hypothesis (Abbi and Natelson, 2012)
https://doi.org/10.1093/qjmed/hcs156

I noticed that this paper from 2012 hasn't been posted yet, so here it is.

Important Note: This paper was published before the modern diagnostic criteria for fibromyalgia were developed. Therefore, it uses the outdated and flawed rheumatological definition of fibromyalgia, which focused on the single symptom of pain.

Abstract:

Chronic fatigue syndrome (CFS) and fibromyalgia (FM) are medically unexplained syndromes that can and often do co-occur. For this reason, some have posited that the two are part of the same somatic syndrome—examples of symptom amplification. This hypothesis would suggest that few differences exist between the two syndromes. To evaluate this interpretation, we have searched the literature for articles comparing CFS to FM, reviewing only those articles which report differences between the two. This review presents data showing differences across a number of parameters—implying that the underlying pathophysiology in CFS may differ from that of FM. We hope that our review encourages other groups to look for additional differences between CFS and FM. By continuing to preserve the unique illness definitions of the two syndromes, clinicians will be able to better identify, understand and provide treatment for these individuals.

 

[Pyrrhus]

Related papers, also by Benjamin Natelson:

Elevations of Ventricular Lactate Levels Occur in Both CFS and Fibromyalgia (Natelson et al. 2017)
https://forums.phoenixrising.me/thr...onic-fatigue-syndrome-and-fibromyalgia.57035/

ME/CFS and Fibromyalgia: Definitions, Similarities, and Differences (Natelson, 2019)
https://forums.phoenixrising.me/thr...finitions-similarities-and-differences.75364/

ME/CFS and fibromyalgia are indistinguishable by their cerebrospinal fluid proteomes (Schutzer et al., 2022)
https://forums.phoenixrising.me/thr...spinal-fluid-prote-schutzer-et-al-2022.88619/

 

[Pyrrhus]

From an interview with exercise researcher Dr. Dane Cook:
https://phoenixrising.me/myalgic-en...ome/pain-pem-dane-cook-fibromyalgia-exercise/

Phoenix Rising:

The current diagnostic criteria for fibromyalgia do not explicitly mention PEM, although they do list “physical or mental fatigue” as a core diagnostic symptom of fibromyalgia, cognitive dysfunction (brain fog) as a “major feature” of fibromyalgia, and hypersensitivities to light, sound, odors, etc. as “common complaints.”​

​

Furthermore, they note that “physical fatigue may manifest as a complaint of physical exhaustion after physical activity, including an inability to function within normal limits for activities that constitute normal daily activities, and the requirement for rest periods after activity.” ​

​

Does your systematic review or previous work support the idea that fibromyalgia comes with PEM?​

Dr. Dane Cook:

I think the literature and our meta-analysis clearly show that fibromyalgia is associated with PEM. Although our data focused on increased pain post-exercise, other studies have shown multiple symptoms are worsened with physical effort. If we define PEM based on self-reported symptoms, then yes, the data support PEM as an element of fibromyalgia.​

 

[Judee]

I don't think they are the same just my opinion and just from my own situation. I have a family member with a Fibro diagnosis. Some of the symptoms are similar but this family member can still work a full-time job, play outside with grandchildren, landscape the yard, go to church regularly etc.

Yeah, there are crashes but those are improved with periods of rest...sometimes prolonged rest...but still the ability to come back to baseline is always there without there being this continual decline even though this person is much older than I am.

This is an old paper, I think from a Q&A from Dr Chia: https://forums.phoenixrising.me/threads/dr-chia-on-oxymatrine-autoimmunity-me-cfs-and-fm.59319/

What he said here seemed to make sense and match the situation with my family member and me.

"As we have shown with the cytokine gene expression studies, patient with severe fibromyalgia actually did not have quite as bad Th2/Th1 imbalance, as comparing to patients with debilitating fatigue without as much myalgia. Conversely, the viral proteins seen in the stomach biopsy are much more abundant in CFS patients than that in fibromyalgia patients (unpublished data). CFS and fibromyalgia are probably the two ends of the same spectrum: one end has much more viruses but little immune response, the other end has few viruses in the tissues but very severe and yet ineffective inflammatory response. I have often seen patients progress from severe CFS to fibromyalgia over several years." [Underline mine.]

I do think it is possible for someone to have both. I've always had some achiness but it increased to the point that a Rheumatologist did put a Fibro diagnosis on my record. However, I'm not sure I do have Fibromyalgia. I know I have ME and I really hope my family member never, ever gets it.

 

[Rufous McKinney]

Some of the symptoms are similar but this family member can still work a full-time job,

I worked a career spanning 49 years. I was "sick with" whatever was my Chronic Eppstein Barr- that whole time.

I didn't fall apart, after a whole day hiking to the top of a mountain. But Thanksgiving kills me.

My whole body "run over by the football team" was what I called it whenever I did too much. (like Thanksgiving Dinner Production for Guests).

I think mild ME is very poorly understood. We are even more not included in the studies.

It was after March of 2018 I got SO MUCH WORSE. And that happened over a period nearly six months.

Here is the part of our illness we tend to IGNORE: physics.

so did I simply vomit so many times, two months apart with severe Gastroperesis, that I damaged my own brainstem?

Its entirely possible.

 

[Marylib]

I think FM and ME may be on a kind of continuum - this is from personal experience. After the initial flurry of respiratory viruses - nonstop for a period of time - eventually there was a shift and it was FM - meaning I could exercise and if I could sleep (impossible) I was kind of okay. I could exercise away the pain - endorphins I guess. I did notice orthostatic intolerance as the years went on. Then some heavy virus and the whole thing went to hell in a handbasket. My mitochondria packed up and went home - never to return. PEM is a concept that doesn't mean much to me. But in FM days - I could exercise without worrying about payback - that's all I know. The entire process might work in reverse for all I know.

 

[Pyrrhus]

It looks like we have a nice diversity of viewpoints:

I have both ME/CFS and fibromyalgia, and have for many years. I've never looked at them as separate illnesses. I think they are the same illness, just expressing itself with different primary symptoms.

I don't think they are the same just my opinion and just from my own situation. I have a family member with a Fibro diagnosis. Some of the symptoms are similar but this family member can still work a full-time job, play outside with grandchildren, landscape the yard, go to church regularly etc.

I have a friend with fibromyalgia.
As long as she’s vigorously exercising several time each week, she’s symptom free.
Her sister has fibromyalgia as well, but she can’t exercise, it makes her symptoms flare.

I think FM and ME may be on a kind of continuum - this is from personal experience.

Here's my own personal perspective:

1. Thirty years ago, the diagnostic criteria for fibromyalgia focused on the single symptom of pain. As a result, it became a wastebasket diagnosis for all sorts of chronic pain patients.
2. Thirty years ago, the diagnostic criteria for "chronic fatigue syndrome" focused on the single symptom of fatigue. As a result, it became a wastebasket diagnosis for all sorts of chronic fatigue patients.
3. Therefore, 30 years ago, the set of patients diagnosed with fibromyalgia were very different from the set of patients diagnosed with "chronic fatigue syndrome".
4. However, the diagnostic criteria for both conditions have evolved independently over the last 30 years, and both the modern definition of fibromyalgia as well as the modern definition of myalgic encephalomyelitis are more refined, each selecting a more coherent group of patients.
5. As a result of the modernization of the two definitions, these days the patients selected by the modern definition of fibromyalgia have strong similarities and substantial overlap with patients selected by the modern definition of myalgic encephalomyelitis. I find this fascinating, since the group of researchers who worked on the modern definition of fibromyalgia generally didn't talk to the group of researchers who worked on the modern definition of myalgic encephalomyelitis - they worked entirely independently of each other.
6. What will the future hold? If the current diagnostic trends continue, will the two conditions be considered the same in the future?

 

[ljimbo423]

Here's my own personal perspective:

These are really good points Pyrrhus.

As a result of the modernization of the two definitions, these days the patients selected by the modern definition of fibromyalgia have strong similarities and substantial overlap with patients selected by the modern definition of myalgic encephalomyelitis.

I find this fascinating, since the group of researchers who worked on the modern definition of fibromyalgia generally didn't talk to the group of researchers who worked on the modern definition of myalgic encephalomyelitis - they worked entirely independently of each other.

This makes a lot of sense to me. If they are the same illness, it makes sense that different researchers would find a lot of over-lap, as their understanding of Fibromyalgia and ME/CFS continues to evolve.

What will the future hold? If the current diagnostic trends continue, will the two conditions be considered the same in the future?

I think they will be considered one illness at some point, it's just a matter of time. I don't know how they could prove it without biomarkers though.

 

[lenora]

Off and on over the years I've lived with both conditions. There is a difference and both can actually come and go. Right now I'm bearing the brunt of both illnesses, plus others (and yes, they cause entirely separate problems).

In MY case knowing the different symptoms helps immensely....it's so much easier to say it's "such and such" and I'll feel better tomorrow. Well, first of all we know that this does not occur.....although there is no doubt that we're able to cope much better some days than others.

Am I exhausted b/c of my ME (CFS), lack of sleep b/c of FM, my heart condition, my other neurological conditions? Who knows.....when I was younger and didn't have so many problems (I have even more than listed) it was much easier to tell them apart. That's not the case today....I'm just sick, that's all I know and that's all my doctors know. Certain things in both the natural and medical world may help....but nothing totally removes the illnesses.

I say "Good luck" to any researcher trying to untangle this general mess. Concentrate on younger people who are more apt to be differentiated. I'm not that patient any longer and I know it. I was a guinea pig for years at a time when "new" meds were being tried and doses arrived at. At times it was torturous, but I stuck with it.

Yes, Pyrrhus, 30 years ago "testing" was different, but then we really didn't have anything that helped in any direction. The only help I've ever found has been in walking....but always knowing my limits. Many other things that I used to do have gone by the wayside, but speaking from the age I am now (75) my friends who didn't have my diagnoses are in the same place. OK, I'm more tired, can't talk for long, but none of us go out in the evening....we're too exhausted. (Well, someone who has a new boyfriend at age 81 goes out, but uses Uber and is home very early.)

In all the years with my illnesses I haven't lost a family member or friend b/c they haven't believed me. I feel that many people are just as badly affected by illness as we are....I see it and live with it constantly. For me as long as I can be outside, reading and doing, (if I can) I'm happy. Perhaps it's music for someone else, art, photos...thinking, cuddling your pets, getting lost in numbers....what difference does it make what it is? Having that first cup of tea or coffee in the a.m. Singing "Hello Merry Sunshine" when we open the blinds can help set the tone of the day, swinging from the bed on to our favorite chair and always a thought for those who can't do any of those things. Those are the people who we can almost ache for....or at least I do. If you have a bad day or week, don't feel pressure....we all go through them. Withdraw and lick your wounds.

Pyrrhus, you've been a helpful and kind person on this forum. Once again, I thank you and hearing your experience(s) is good. Yours, Lenora

 

[Consul]

I havent looked much at fibromyalgia but there must be a reason its so comorbid with me/cfs. Maybe slightly different areas of the brain is affected by the disorders but by the same pathological process.

That said, Lady Gaga has fibromyalgia and also is running a huge music/artist career i think. I struggle to see how a person with mecfs would be able to do that, even the mildest cases. I was mild for years but a career like that would be impossible.

 

[Rufous McKinney]

I was mild for years but a career like that would be impossible.

I pulled off 30 years of full time job including driving for hours to meetings, being out for a week at a time, not home eating out of restaurants. I'd work on weekends and I wrote huge reports "on my days off".

Did physical hiking off trail in rugged mountains. I was wiped out every night. I rose the next day and did it all over again.

I was always more tired than anybody else. but I did the deed. I snorkeled every day in Hawaii. I was also sick for the entire trip- low grade fever, lymph flared, and internally unsettled. But there I am vacationing. Everybody else napped, but I could not nap at that time.

Mild is REAL.

RE: FIBRO-...sharing that a visiting nurse from my insurance, came here. She told me she has Fibromyalgia. (she is there, working).

She then told me our insurer will "never treat us"..... so the message is- just keep sending Huge sums of money to a company that does not acknowledge I exist....

 

[Consul]

@Rufous McKinney what about PEM? Or dont you have PEM as part of your symptoms?

 

[Rufous McKinney]

what about PEM?

My decades of mild did not include a classic PEM state, but episodically if I overdid enough, I'd have a period of time where I was "far more run down" which is likely the mild version of PEM.....I'd stop running around, and I'd be low energy for a period of time. I'd avoid meetings and freeways. (I'd still work reading and writing reports)

Now I am a classic PEM case!

 

[Consul]

My decades of mild did not include a classic PEM state, but episodically if I overdid enough, I'd have a period of time where I was "far more run down" which is likely the mild version of PEM.....I'd stop running around, and I'd be low energy for a period of time. I'd avoid meetings and freeways. (I'd still work reading and writing reports)

Now I am a classic PEM case!

Ye, the PEM thing is kinda key for mecfs in my view. I had PEM even when i was mild and without it the disease would have been a very different story tbh.

 

[Hufsamor]

What I thought was the big difference between the two, was the fact that exercise helps with fibromyalgia, but would be a killer for one with me/cfs.

I was able to work part time for a long time, with mild me/cfs, and quite active job as well. But when I tried to exercise like my fibromyalgia friend had learned
(I don’t remember what it’s called , but you walk ordinary speed, then as fast as you can uphill, back to ordinary speed) I experienced my very first me -collapse, and almost fainted in the ditch.

I have read about several people claiming to have me, but exercise are a huge part of their lives. And for some reason, some doctors are still convinced that graded exercise is the thing to do for an me/ cfs patient.

so with this discussion going on I wonder….
Would it perhaps the same illness, but with and without intolerance against exercise?

 

[Rufous McKinney]

I had PEM even when i was mild and without it the disease would have been a very different story tbh.

I was told I had impossible disease, recurrent Eppstein Barr virus. that served to explain my illness for the next fifty years.

I was aware of CFS, and the Yuppie flu thing. If I connected it with my illness, frankly I can't remember any more.

thats the problem with being sick since your one year old and now I am 69.

 

[ljimbo423]

Would it perhaps the same illness, but with and without intolerance against exercise?

I think it is the same illness, but with a spectrum of exercise intolerance (PEM). Some people with Fibromyagia I think get PEM or fatigue, but usually milder than us. But some people with Fibromyalgia don't get PEM and are helped with exercise.

This is from Pyrrhus' post above-

In summary, these are the current diagnostic criteria for fibromyalgia:

Core Diagnostic Criteria: ("dimension 1")

1. Multi-site pain (MSP) defined as 6 or more pain sites from a total of 9 possible sites (see diagram below)
2. Moderate to severe sleep problems OR fatigue
3. MSP plus fatigue or sleep problems must have been present for at least 3 months

Supporting Signs and Symptoms: ("dimension 2")

1. Tenderness (muscle soreness)
2. Cognitive dysfunction (formerly known as "brain fog")
3. Musculoskeletal stiffness
4. Sensory hypersensitivity or hypervigilance (hypersensitivities to light, sound, odors, etc.)

 

[Hufsamor]

What happened to the tender points?

 

[ljimbo423]

What happened to the tender points?
View attachment 49403

They still have that. Here is a link to Pyrrhus' full post on the current diagnostic criteria for fibromyalgia.

 

[Rufous McKinney]

This is from Pyrrhus' post above-

I have all that you listed.

And I visit my doctor now and then, fibromyalgia never even comes up.....

I have lists of untreated problems that aren't getting addressed