Fibromyalgia, H.I.V. and Chronic Fatigue

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Fibromyalgia, H.I.V. and Chronic Fatigue

_http://consults.blogs.nytimes.com/2010/01/21/hiv-fibromyalgia-and-chronic-f

=atigue-syndrome/?ref=3Dhealth_

(http://consults.blogs.nytimes.com/2010/01/21/hiv-fibromyalgia-and-chronic-f=ati\

gue-syndrome/?ref=3Dhealth)

 

When The New York Times reported on a possible link between _a virus

called XMRV and chronic fatigue syndrome_

(http://www.nytimes.com/2009/10/13/health/13fatigue.html?ref=health) , many

readers had questions. Here, Dr.

Nancy G. Klimas, who serves on the board of the International Association for

Chronic Fatigue Syndrome, responds to readers’ questions about

fibromyalgia, H.I.V., cystitis and chronic fatigue syndrome. Dr. Klimas is a

director

of the department of immunology of the University of Miami School of

Medicine and director of research for clinical AIDS/H.I.V. research at the

Miami

Veterans Affairs Medical Center.

 

 

H.I.V. and Chronic Fatigue Syndrome

 

Q.

One thing I don’t notice here is comments by people with both H.I.V. and

chronic fatigue syndrome. People with H.I.V. have long lived with the fear

of not being able to speak openly of their difficulties. And medications are

no picnic and no sure cure. People with H.I.V. have learned that, when you

think you’re finally understood and supported, don’t be fooled — you’re

not. You’re only feared and looked down on.

 

But living with C.F.S. and being in agony, losing everything else in life

that meant anything — and also not being able to get any medical help or be

understood about it — that really hurts worse. The two together must be a

nightmare almost too unbearable to continue to live with.

 

Kim

 

 

A. Dr. Klimas responds:

Interesting points. H.I.V. is a tough illness; I have cared for H.I.V.

patients since 1983 and lost more than 1,000 to AIDS before the effective

therapies came out in 1994.

 

Since then, most H.I.V./AIDS patients are in much better health, though

they have suffered through the medical learning curve as we learned about

common and rare drug toxicities, and the pharmaceutical industry developed

easier treatment regimens requiring fewer pills. In 1994, our Veterans

Administration H.I.V. in-patient unit averaged 38 full beds; right now, I have

one

patient in the hospital for H.I.V.-related problems.

 

H.I.V. and C.F.S. can coexist in an individual, but the combination does

not meet the case definition for chronic fatigue syndrome, which requires

the exclusion of coexisting illnesses that could explain fatigue. Still, I

find myself providing consults on H.I.V. patients with profound fatigue —

they are so uncommon that the local H.I.V. doctors refer them to my clinic. I

can almost always find a cause for the profound fatigue. Reactivation of the

cytomegalovirus, or CMV, infection is a common explanation, even in those

who have excellent CD4 counts. Symptoms of fatigue in these patients may

also be related to chronic active hepatitis.

 

If — and this is a big if — XMRV turns out to be a big player in C.F.S.,

one would expect 3 percent to 4 percent of the H.I.V. population to have

the virus as well, and that would put them at risk of viral reactivation of

XMRV. But, since many H.I.V. patients are on antiretroviral drugs and if

some of those medications were also active against the XMRV virus, it might

not actually result in a C.F.S.-like illness.

 

I raised the issue of case definitions above. Remember that when

scientists define an illness, they do so to go after the group that has the

illness,

trying to exclude as many similar illnesses as possible.

 

Before we had a blood test to identify patients infected with H.I.V., for

example, AIDS was defined as an illness affecting men 18 to 65 years old

who had opportunistic infections. When H.I.V. was discovered and a reliable

blood test to identify the virus was established, the case definition

changed to include women and children, and doctors could define an asymptomatic

H.I.V. illness. But it took that narrow initial circle to find a bug that

caused the illness.

 

So while today’s C.F.S. case definition clearly will exclude some people

with the illness, including those afflicted with other illnesses at the same

time, it is meant as a research tool.

 

A Canadian sponsored international working group has developed _another

clinical case definition of C.F.S._

(http://www.cfids-cab.org/cfs-inform/CFS.case.def/carruthers.etal03.pdf) . that

was meant for clinical use. The case

definition usefully separates symptoms into autonomic, inflammatory and

endocrine categories.

 

There is also _a pediatric case definition_

(http://www.iacfsme.org/Portals/0/pdf/pediatriccasedefinitionshort.pdf) for

chronic fatigue syndrome.

 

 

Fibromyalgia and Chronic Fatigue Syndrome

 

Q.

I have been diagnosed with fibromyalagia and C.F.S. for nearly eight

years. My question is: Is it possible that fibromyalgia is just the infant

stages of myalgic encephalomyelitis/C.F.S.? It seems the longer you have F.M.,

the worse it gets and the symptoms are more in tune with C.F.S. as it

progresses.

Sincerely,

Stacey, Salt Lake City

 

 

A.Dr. Klimas responds:

It is very likely that under the umbrella of the chronic fatigue syndrome

diagnosis there are several subgroups of the illness. The two largest are

the postviral syndrome onset of C.F.S., and the slower onset of fibromyalgia

that evolves into a C.F.S. illness. Several research groups are studying

the biology of these two types of onset. One group in Spain has developed a

diagnostic test based on patterns of gene activation that seems to

distinguish between these two groups; they presented their work at an

international

meeting last spring. It is important that researchers look at subgroups,

as it is likely the treatment approaches for each may be quite different.

 

Even within fibromyalgia, there may be subgroups of patients. Dr. Andrew

Holman _published a study_ (http://www.ncbi.nlm.nih.gov/pubmed/18499527)

several years ago suggesting that a subgroup of fibromyalgia patients had

enough cervical arthritis or bony abnormalities to in effect bruise the

spinal cord in certain positions. Dr. Holman suggested that these patients

should be treated more like patients who had spinal cord injuries, using

medicines that calmed overactive nerve fibers and reduced inflammation. One of

the three approved medications for fibromyalgia — pregabalin (Lyrica) —

does

act in this fashion.

 

Your own insight into your illness is very helpful. The connections that

link fibromyalgia and C.F.S. are not well understood. It will take studies

that follow patients over time and that watch for factors that mediate

changes for the good or bad to really get at what is going on.

 

At the University of Miami, we have a study called the “good day, bad dayâ€

study, which hunts for the biomarkers that predict a relatively good day

or relatively bad day in patients with C.F.S. We see study subjects four

times over 18 months and measure everything under the sun (well, mostly

immune and endocrine measures). For more information, contact

_lgarcia2_ (lgarcia2) .

 

 

Fibromyalgia, Myalgic Encephalomyelitis and Chronic Fatigue

 

Q.

I’d like to know if Dr. Klimas believes that M.E. is both C.F.S. and

fibromyalgia combined, and if she believes that any treatments created for

M.E./C.F.S. would also alleviate the suffering of fibromyalgia? Or does she

believe fibro is a totally different illness, even though most of the time,

U.S. patients are diagnosed with both initially, or else partway into the

expression of one or the other as a presenting illness.

 

Nerdse

 

 

A.

Myalgic encephalomyelitis, or M.E., was defined by British investigators

as the more extreme end of the chronic fatigue syndrome spectrum. The term

is used in a number of countries instead of the term chronic fatigue

syndrome and implies brain inflammation and muscle pain.

 

Muscle pain occurs in both C.F.S./M.E., as well as in fibromyalgia.

Whether brain inflammation also occurs is more controversial. There are

_neuroimaging studies_ (http://www.ncbi.nlm.nih.gov/pubmed/9790483) that

support the

concept of neurologic abnormalities in C.F.S./M.E., particularly studies

that look at blood flow. More recently, _studies by Dr. Shungu and

colleagues looking at brain lactate levels_

(http://www.ncbi.nlm.nih.gov/pubmed/18942064) suggest that cortical blood

flow issues result in a reduced

ability to clear the toxin lactate. This might act directly on the brain,

explaining the cognitive function findings, or it may result in local

inflammation, also causing symptoms relating to the region of the brain

affected.

 

Fibromyalgia seems to occur as a result of a ramped up pain signaling

pathway in the brain. Sixty percent of C.F.S./M.E. patients also have

fibromyalgia, so the two conditions seem to be related.

 

 

A Link Between Cystitis and Chronic Fatigue?

 

Q.

I’m wondering if interstitial cystitis could also be associated with XMRV

infection. Is any one looking into this?

Stephanie Bergweiler

 

I have a history of Crohn’s disease, Sjogren’s syndrome, interstitial

cystitis and then got C.F.S. When I started meeting others with C.F.S., many

had Sjogren’s and interstitial cystitis. Last night I spoke to a woman with

R.A., interstitial cystitis and C.F.S. Have you seen constellations like

this, and if so, do you have any explanation?

Andy

 

 

A.Dr. Klimas responds:

 

Both interstitial cystitis and fibromyalgia overlap with C.F.S. Right now

we have to use the case definitions of each to make a diagnosis, as none

have a diagnostic blood test that is well accepted. It is possible to have

all three of these conditions at once. Fibromyalgia is more common than the

other two, and about 60 percent of C.F.S. patients also have fibromyalgia.

 

 

For more on chronic fatigue syndrome, see:

 

“Readers Ask: A Virus Linked to Chronic Fatigue Syndromeâ€

_http://consults.blogs.nytimes.com/2009/10/15/readers-ask-a-virus-linked-to-

chronic-fatigue-syndrome/_

(http://consults.blogs.nytimes.com/2009/10/15/readers-ask-a-virus-linked-to-chro\

nic-fatigue-syndrome/)

 

_Expert Answers on Chronic Fatigue Syndrome_

(http://consults.blogs.nytimes.com/2009/11/24/expert-answers-on-chronic-fatigue-\

syndrome/)

 

_“Behavioral Treatments for Chronic Fatigue Syndrome.â€

_

(http://consults.blogs.nytimes.com/2009/10/13/behavioral-treatments-for-chronic-\

fatigue-syndrome/) _The Times Health Guide: Chronic Fatigue

Syndrome_

(http://health.nytimes.com/health/guides/disease/chronic-fatigue-syndrome/overvi\

ew.html?WT.z_gsac=1)

 

 

 

Related Posts

 

 

From Consults

* _Expert Answers on Chronic Fatigue Syndrome_

(http://consults.blogs.nytimes.com/2009/11/24/expert-answers-on-chronic-fatigue-\

syndrome/)

* _Readers Ask: A Virus Linked to Chronic Fatigue Syndrome_

(http://consults.blogs.nytimes.com/2009/10/15/readers-ask-a-virus-linked-to-chro\

nic-f

atigue-syndrome/)

* _Behavioral Treatments for Chronic Fatigue Syndrome_

(http://consults.blogs.nytimes.com/2009/10/13/behavioral-treatments-for-chronic-\

fatigue-sy

ndrome/)

* _The Mystery of Chronic Fatigue Syndrome_

(http://consults.blogs.nytimes.com/2009/10/09/the-mystery-of-chronic-fatigue-syn\

drome/)

* _Alternative Therapies for Fibromyalgia_

(http://consults.blogs.nytimes.com/2009/09/23/complementary-and-alternative-ther\

apies-for-fibromyalgia

/)