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Ask the Doctor: Is CFS an onset to fibromyalgia? What is the difference?

  [ 16 votes ]   [ 2 Comments ]
By Dr. David S. Bell • • September 12, 2015

Ask the Doctor: Is CFS an onset to fibromyalgia? What is the difference?. David S. Bell, MD, is one of the world’s leading experts on ME/CFS, and is a pioneer in its diagnosis and treatment.
David S. Bell, MD, is one of the world’s leading experts on ME/CFS, and is a pioneer in its diagnosis and treatment.
Q: I was diagnosed with CFS in 1994, and fibro in 1998. Was CFS an onset to fibromyalgia? What is the difference?

A: A long time ago I wrote a book, and in it I described “lumpers” and “splitters”. A lumper is one who gathers all similar vegetables in one basket and carries it to the house. A splitter separates the squash from the eggplant and carries them to the house in two separate baskets. I have always been a lumper, although I recognize the need for the splitters at times.

Take for example the question of Down’s Syndrome. When I was in training, Down’s Syndrome was known as trisomy 21, that is an extra chromosome 21 present first described by John Langdon Down in 1866. It caused a specific abnormalities in facial appearance, cognitive issues, growth and other areas. It was thought to be very specific and unique to this extra chromosome 21.

Now, however, we know that the same syndrome can exist with pieces of chromosome 21 in excess, or in the attachment of the long arm of chromosome 21 to another chromosome, a process called translocation. A lumper would call these variations irrelevant as the clinical disease is basically the same. A splitter would say that they are different genetic diseases.

I feel that ME/CFS is the same basic illness as fibromyalgia, and I hope no one has a stroke because I have said this. It is well known that FM is very common in ME/CFS, and I published a paper saying that in kids, 75% of those with ME/CFS also have fibromyalgia. Depending upon the criteria used, this figure would be different. In one family I saw in Lyndonville, several kids became ill. One had very little pain, clearly a case of ME/CFS. In a sibling, pain was by far the most severe symptom, but because they both became ill from the same family, they must have had the same illness.

Another point that is important is that at the beginning of whatever illness this is, fatigue and viral symptoms predominate. After several years, the muscle and joint pain becomes more of a problem. So in your question about two diagnoses separated by several years, I see this as the natural history of the disease, not the presence of two separate illnesses. Best of luck. David Bell, MD

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Not so fast!
Posted by: IanH
Sep 13, 2015
In complex illnesses like ME/CFS the number of genes involved seems to be correlated to the type and extent of the symptoms. This can be the case within a family.

There are now many known instances of the following "syndromes" existing within three generations in the same family:


This is similar to these syndromes, where the number of genes involved are correlated to the type and extent of the symptoms:

Schizophrenia, autism

So when we label a syndrome we tend to bias the view of the syndrome and it becomes an error of logic to assume that a similar symptom set is one illness.

We say things like "ME/CFS has many different triggers"
"ME/CFS affects people differently". These are assumptions are based on the previous errors of logic.

On the other hand it is handy to have a label, a word that is shorthand for what is wrong.

This problem causes confusion in both clinical diagnosis and research diagnosis as we can see when we look at the various diagnostic definitions/criteria. What happens here is that the criteria for the label become restricted to certain mix/degree of the symptoms eg.
PEM, Memory and cognitive deficits (brain fog), Non-restorative sleep.

In the Canadian criteria, The clinical definition makes it clear that in order to meet the diagnostic criteria, the patient must become symptomatically ill after exercise, and must also have neurological, cognitive, endocrine, dysautonomic (for example, orthostatic intolerance), and immune manifestations.

Now what if you have all of them except PEM? There are quite a few people with all the others but imperceptible PEM. Do they not have ME/CFS?

If they have myalgia they will definitely be labelled FM. (and these people are told "exercise is what you need").

If they have extensive chemical/toxin susceptibility they will be labelled MCS. These people may or may not have PEM. This problem in cases of MCS who's parent meets ME/CFS criteria with PEM is causing such people to be excluded from research and even more so to be sent to a psychiatrist because they "do not have ME/CFS".

All within the same nuclear family!

So even the Canadian criteria are inadequate, unless we exclude these people but as Dr. Bell says it is surely likely they all have the same syndrome. Or do they?
Reply Reply

Clinical or research
Posted by: IanH
Sep 13, 2015
Dr. Bell is primarily a Clinician and clinicians can be flexible about the criteria that define a syndrome. Their job is to help their patient. In research the criteria for selection become more important to the validity of the research. When research applies a criterion for patient selection we must be told precisely what they were. Not just say "by the Fukuda criteria". Some people may have myalgia (FM) and others might not. Some might have MCS and others may not.

I think all three of these syndromes (ME, FM and MCS) are homeostatic problems and we can learn a lot by comparing these groups. For example why do some of these (in all three) have PEM?
Why do some people with ME not have FM? Why do some people with MCS not have PEM and some do? etc. If these people all exist within the same nuclear family study them all. There are answers in there.


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