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ME
– INFO
Neurologische
en myologische verschijnselen
De
onderstaande lijst is een totaaloverzicht van MOGELIJKE symptomen.
Het feitelijke klachtenpatroon varieert van moment tot
moment en van patiënt tot patiënt.
ademhalingproblemen
gebrek
aan eetlust
verandering
van gewicht
ischias
(heupjicht)
grillig
verloop van de ziekte: plotselinge terugval en kort herstel
haaruitval
en/of verandering van de haardos
hartkloppingen,
hartritmestoornissen, -kloppingen en -krampen
kortademigheid
abnormale
lichaamshouding
premenstrueel
syndroom (PMS)
afwijkende
reactie op medicijnen en voedsel
endometriosis
(baarmoederweefsel-groei in de bekkens)
afname
of het verdwijnen van de vingerafdrukken
hoesten
hongerig
gevoel/valse honger
malaise
(je altijd ziek voelen)
snelle
pols
rillerigheid
en koukleumen
rode
wangen of juist een bleek gelaat
overmatig
transpireren en nachtzweten
verhoging
(ook: temperatuurregulatiestoornissen en koortservaring)
verkoudheid
allergieën
pijn
in achillespezen
beslagen
tong
bindweefsel-onsteking
branderige
en droge keel, mond, neus en ogen
dorst
droge
vagina
huiduitslag,
huidirritatie en het spontaan ontstaan van blauwe plekken, jeukende, tintelende
en prikkende huid
infecties
jicht
keelontsteking
aanwezigheid
van lichaamsvreemde eiwitten
slijm
in longen
pijnlijke
en/of gezwollen lymfeklieren (hals, oksels, kruis)
neusallergieën,
neusslijmvlies-ontstekingen en sinusitis
aaneengeplakte
en/of ontstoken oogleden
oorontsteking
overgevoeligheid
voor chemicaliën
schildklier-ontsteking
snotterigheid
pijnlijke
speekselklieren
steenpuisten
tandvleesontsteking
en wortelontstekingen
abnormale
verhouding helper/suppressor cellen (T4/T8)
voedselallergieen
afname
van de witte bloedlichaampjes
zandgevoel
in ogen
buikklachten (constipatie
en/of diarree, opgeblazen buik)
buikpijn
en geïrriteerde darmsyndroom (IBS)
incontinentie
intolerantie
voor alcohol
maag(slijmvlies)ontsteking
misselijkheid
en overgeven
veelvuldig
en/of branderig plassen (geïrriteerde blaas)
winderigheid
bloedarmoede
abnormale
creatinine-levels, leverenzymen, urinezuur
je
aandacht niet bij iets kunnen houden (ADD)
agorafobie
(niet alleen op straat durven)
angst
en paniekaanvallen
apathie
en gebrek aan initiatief
boosheid
en agressie
emotionele
labiliteit
concentratieproblemen
afname
denkvermogen
ruimtelijke
desoriëntatie en zweverig gevoel
dyslogia
(met spreken en denken)
geheugenstoornissen
(vooral korte-termijn geheugen)
hallucinaties
neerslachtigheid
of euphoria
opvliegingen
persoonlijkheidsstoornissen
en -veranderingen
prikkelbaarheid
moeite
met rekenen
verspreken
of het goede woord niet kunnen vinden (aphasia)
niet
bij machte te verstaan wat er tegen je gezegd wordt of wat je leest
black-outs
dooreenhaspelen
en het niet kunnen vinden van woorden
een
"duf hoofd" hebben ("brain fog")
dyslexia
evenwichtsproblemen
gevoel
van flauwvallen
stijf,
tintelend of branderig gevoel in handen, voeten en/of gezicht
hormoonstoornissen
hypotensie
of hypertensie
koude
handen en voeten
afname
van libido
microcirculatie-stoornissen
afbraak
en vervorming van mitochondrieen
onhandigheid
slaapstoornissen
(hypersomnia of insomnia, slaperigheid, niet-verkwikkende slaap en slaap-apnea,
veel en rare nachtmerries en overdreven levendige dromen)
spierzwakte
stijfheid
van de tong
neurologische
uitvallingsverschijnselen
overgevoeligheid
voor temperatuurswisselingen
verlammingsverschijnselen
overgevoeligheid
voor weersomslag
zenuwtrekjes
van spieren
chronische
achtergrondspijn
borstpijn
gewrichtspijn
hoofdpijn,
pijn
op de verbindingsplek tussen onder- en bovenkaak
pijn
in lymphe-klieren
nekpijn
pijn
in oogbal en oogspieren
rugpijn
chronische
spanning en/of beklemmend gevoel in de spieren
spierpijn
(vooral in ledematen) en fibromyalgia (branderig, uitstralend en knagend gevoel,
gevoelig, stijf en/of jeuk hebben)
spierspasmen
spierstijfheid
en spierzwakte in de ledematen
stekende
pijn (in borst, handen en voeten, ogen, pols, voorhoofd, buik)
uitputtingsverschijnselen
snelle
vermoeibaarheid en gebrek aan uithoudingsvermogen
extreme
vermoeidheid
terugval
na inspanning (inspanningsintolerantie)
evenwichtsstoornissen
(duizeligheid, Romberg positief)
fotofobie
(intolerantie voor hel licht)
eenzijdige
gehooruitval
overgevoeligheid
voor geluid
oorpijn
tinnitus
(oorsuizingen, een bel of zoemer horen, gebrul of klikgeluiden)
reukhallucinaties
veranderingen
in de smaaksensatie, reuk of gehoor
sterretjes
zien
verminderende
tastzin
wazig
en/of dubbel zien
overbelaste
zintuigen (geen onderscheid kunnen maken)
EG Dowsett, E Goudsmit, A Macintyre, C Shepherd, et al., London criteria
for M.E., Report from The National Task Force on
Chronic Fatigue Syndrome (CFS), Post Viral Fatigue Syndrome (PVFS), Myalgic
Encephalomyelitis (ME). Westcare,
1994, pp. 96-98.
Alle
drie criteria moeten aanwezig zijn om de diagnose ME/CVS vast te stellen:
1.
Vermoeidheid veroorzaakt door beweging, aangericht door onbeduidend
kleine inspanning (geestelijk zowel als lichamelijk) in relatie tot de vorige
bewegings tolerantie van de patiënt.
2.
Beschadiging van het korte termijn geheugen en verlies van het vermogen tot
concentreren, normaal gesproken gekoppeld met andere neurologische en psychische
storingen zoals emotionele labiliteit, behoorlijke dysfasia (stoornis in het
vermogen om woorden of zinnen te vormen echter zonder stoornis in het denken)
verstoorde slaap patronen, evenwichtsstoornissen of tinnitus (niet
hallucinatoire gewaarwording van geluid zonder dat hieraan een geluidsprikkel
van buitenaf aan ten grondslag ligt).
3.
Schommelingen in symptomen, normaal gesproken veroorzaakt door lichamelijke of
geestelijke activiteit.
Deze
symptomen moeten minstens 6 maanden aanwezig zijn en continu voortduren.
Hoewel
ME/CVS zich typisch gedraagt als een virus infectie, gewoonlijk een virus ziekte
(die aanwezig kan zijn voor het verschijnen van de symptomen)
in een voormalig fit en actief persoon, is nagegaan dat het ook kan
worden getriggerd door andere factoren zoals vaccinaties, ernstige lichamelijke
schade en blootstelling aan chemicaliën. Bovendien, bij een klein aantal
patiënten, ontstaat ME/CVS zonder een duidelijk aanwijsbare trigger. Om deze
redenen is een bewijs voor een voorgaande virale ziekte niet een eerste vereiste
om de diagnose te stellen.
Mensen
met ME/CVS ervaren veel symptomen
en in de goeie symptomatische context dragen ze bij aan een goeie diagnose.
Desondanks is het zo dat niet alle patienten met ME/CVS al deze symptomen
meemaken en hun afwezigheid sluit deze ziekte niet uit.
De
symptomen kunnen worden ondergedeeld in twee categorieën:
Autonoom.
Aanvallen
van onbehoorlijk dag of nacht zweten;
Raynaud’s
fenomeen (dode vingers of tenen t.g.v. plaatselijke vaatkrampen);
Houdings
lage bloeddruk;
Verstoring van de beweging van de darm wat zich manifesteert in zich
herhalende diarree en soms verstopping (deze symptomen vaak niet te
onderscheidden van die van het geïrriteerde darm syndroom);
Fotofobie
(lichtschuwheid);
Troebel
zicht veroorzaakt door een verstoorde accommodatie;
Hyperacusis
(sterk verhoogde gevoeligheid van het gehoororgaan voor scherpe geluiden);
Vaak
plassen; ‘s nachts.
Immunologisch
(Symptomen
suggereren een hardnekkige virus infectie):
perioden
van lage koorts (de orale temperatuur komt niet boven de 38,6C) gecombineerd met
je koortsig voelen (d.w.z. een naar beneden gereguleerde thermostaat);
zere
keel die voortduurt of steeds terugkomt (d.w.z. minstens een week per maand
aanwezig);
gewrichtspijn
(op een plek of zwervend).
Deze
lijst is zeker niet uitputtend. Hoofdpijnen, misselijkheid en opgeblazen gevoel
zijn bijvoorbeeld gewone symptomen bij veel patiënten maar ze zijn niet
onderscheidend genoeg omdat z ook veel voorkomen bij andere ziekten.
De eigenaardige intolerantie voor alcohol en de extreme gevoeligheid voor
medicijnen zijn erg bepalend in deze kontekst. Er moet zeker worden opgemerkt
dat de symptomen van ME/CVS de neiging hebben om erg wispelturig te variëren
van uur tot uur en van dag tot dag. Desalniettemin is het absoluut
karakteristiek dat het slechter word bij lichamelijke en psychische belasting en
de associatie moet altijd worden gezocht kijkend naar de geschiedenis.
(benign) myalgic encephalomyelitis
chronische
Epstein Barr virus infectie
chronische
Pfeiffer
chronisch
vermoeidheidssyndroom
myasthenia
neuro(my)asthenie
Nightingale
syndroom
Esptein-Barr
virus reactivatie syndroom
chronich-actief Epstein-Barr virus syndroom (CAEBV)
chronich
viraal syndroom
chroniche
hyper-atigability syndrome
spasmophile
(Frankrijk)
raphe
nucleus encephalopathy
epidemic
vegetative neuritis
post-viral
fatigue syndrome (PVS)
post-infection
encephalomyelitis (PIE)
Post
infection fatigue syndrome (PIFS)
Royal
Free ziekte
IJslandse
ziekte
Akureyri
ziekte (IJsland)
Tapamui
ziekte
Lake
Tahoo ziekte
(pronounced ‘see fidds)
Chronic Fatigue Immune Dysfunction Syndrome (called Myalgic
Encephalomyelitis outside of the United States) is an illness that can afflict
men, women and children. Evidence shows that CFIDS has been around since the
early 1900’s and was considered a neurological disease although it was never
completely understood. It “re-emerged” into the present day in the early
1980’s and was called the ‘Yuppie Flu’ because it seemed to mainly affect
middle class white women. Studies now indicate that CFIDS is found in all
ethnicities, ages, economic classes and in both sexes although it is not
diagnosed at the same rate for all these groups.
The symptoms include extreme fatigue especially upon exertion (which is
unexplained and results in 50%
decrease in activity for at least six months), sore throat, swollen and
painful lymph nodes, muscle and joint pain (sometimes severe) and neurological
difficulties (which can include poor memory, memory loss, difficulty
concentrating, insomnia, aphasia, mood disturbances, seizures, temporary limb
paralysis, and temporary blindness.) Most people with
CFIDS (PWCs) have herpes virus reactivations such as the Epstein Barr
virus, Human Herpes Virus #6 and Cytomegalovirus which contribute to the
seriousness of CFIDS.
Other common symptoms include digestive problems (nausea, diarrhea,
constipation, weight loss or weight gain) and an increase or appearance of
varied allergies or chemical sensitivities which can inflame the above symptoms.
Not all PWCs have every symptom or have them all the time. This illness has been
given many inadequate names over the years since it was ‘discovered’ in the
1970’s. It has been called Chronic Epstein Barr Virus, non-HIV AIDS, Yuppie
Flu and now officially: Chronic Fatigue Syndrome
(CFS) and Myalgic Encephalomyelitis (M.E. – European name). This illness is
often ignorantly referred to as just ‘chronic fatigue’ which is known to be
a very common symptom in everything from the flu to cancer. This seriously
trivializes the disease. There is still no completely accurate name for this
devastating illness but its latest unofficial name is Chronic Fatigue Immune
Dysfunction Syndrome (CFIDS).
Many people with CFIDS also develop illnesses/disorders that often
coincide with or possibly result from CFIDS. For more info on these added
disorders found in CFIDS, read the Treatment page on this site.
Immune dysfunction has been found to exist in Chronic Fatigue Syndrome
which resulted in the newer unofficial name: Chronic Fatigue Immune Dysfunction
Syndrome. The immune dysfunction can be so severe as to result in opportunistic
infections. The most severely ill PWCs have been found to fit the criteria for
late stage AIDS although they do not test positive for the HIV virus and there
is no expected death. Some severely ill PWCs have died from opportunistic
infections acquired or injuries which
resulted in infections, but this seems to be the exception rather than the rule.
The current research criteria compiled by the Centres for Disease Control
are quite incomplete and do not include many of the very common symptoms
mentioned above. The criteria has been criticized for excluding those patients
who have been ill for less than six months and do not fit the criteria only for
this reason. These patients are ignored for the first six horrible months as a
result, possibly resulting in a more severe and more disabling illness. The
symptoms of CFIDS are precise and it can be diagnosed a short time after onset
through lab work (to eliminate other diseases) and symptomology.
The symptoms are varied in appearance frequency, type and in intensity
depending on the individual person. A common pattern in CFIDS is a waxing and
waning of symptoms. After exertion, the symptoms increase in intensity. Exertion
is relative for PWCs. Some people find it very difficult or impossible to leave
their beds or to walk across their house while others just find it difficult to
work at their jobs. The more severe case is not more important, just different.
It is difficult for a PWC in society to be taken seriously. When the “yuppie
flu” was in the news in the 1980’s, most doctors (many still do) believed
that the fatigue and the somatic complaints were the result of some sort of
psychological disorder such as somatization disorder, malingering, or just
depression. This assumption seemed to be confirmed by early flawed research. Due
to the medical community’s impulse to label any misunderstood and unresearched
disease as a mental disorder or behaviour problem (such as they did to polio, MS
and even AIDS in the early years), it has taken years of accurate research to
show that CFIDS is a real physical
disease that is devastating to the victim. The basic fact that some of the
symptoms can be observed by the physician (swollen lymph nodes, opportunistic
viruses in lab work, reflex problems, immune dysfunction, absence of mental
illnesses, etc.) is clear evidence of an organic disease.
Unfortunately, the rift between researchers and the average physician is
a wide one, and dangerous ignorance still prevails in the medical community
resulting in prejudice, abuse and insult rather than helpful treatment.
Some PWCs (it is still debated as to what percentage) also suffer from
depression. Some studies have found that this depression is chemically different
from the commonly diagnosed clinical depression that is found in the general
population. The common depression that some PWCs have is the result of living
with a chronic illness. All chronic illnesses have secondary depression involved
and yet many scientists and doctors decided that it was the cause of CFIDS
rather than the effect.
Some still believe this... and that is what it is... a belief based on
either flawed evidence or, often, just rumours from ignorant peers.
Some people with CFIDS experience relapses and remissions after the
initial onset (either gradual or sudden onset) of the illness while others
experience a continual debilitation with the waxing and waning of symptoms. The
general accepted rule is that most people with CFIDS eventually improve with
time but this is still debated. Many PWCs continue to have symptoms for decades
and some seem to get worse.
Any research or statistics on CFIDS must be examined carefully. If the
researchers have not had a lot of experience with CFIDS patients, they will most
likely have a faulty study population...it will have people with only
psychological illness, with only mononucleosis/glandular fever, or even healthy
people who are just a little tired. The results cannot be trusted in such cases.
Very often, studies are done by scientists or psychologists who want to prove
that CFS/CFIDS/ME is just malingering or another psychological illness.
Disability insurance companies have a lot to gain if they can somehow
convince a court that a PWC is just
mentally ill and not “really sick.” Lately, such court cases have not been
successful and more and more often, PWCs are given their full disability
pensions. Some studies only include the least severe cases. Some PWCs are so
severely ill that they would be unable to make a car trip to the lab let alone
participate in a study!
Some are unable to stand upright without passing out. The onset of CFS/CFIDS
usually starts with an attack on the person’s immune system. It could be an
illness like a Strep throat infection, severely stressful or physically
traumatic event or mononucleosis. All of these temporarily weaken the immune
system. Whatever triggers the development or activation of CFIDS ...the effect
is the same. Once productive, respected, and independent people are now possibly
bedridden, homebound, unemployed and, too often, stamped with ‘the looney
stamp’ by ignorant health professionals.
Often, the illness destroys their life and they must form a new life that
allows them to live within the limits that are now set by their illness. There
is life after CFIDS, but PWCs may lose their jobs, homes, credit, marriages, and
even family. Why is this more common with CFIDS than it is with other serious
illnesses like Multiple Sclerosis or Lupus? It is the lack of education and
information on the part of health professionals and the public.
Some PWCs after a while are able to work part time or even full time as
long as they rest and can recognize their symptoms of “overdoing it.” Other
PWCs are bed bound from the first onset and ADLs (activities of daily living)
are extremely difficult if not impossible. There are also some people in between.
There is much debate as to the possibility of many illnesses making up the CFIDS
diagnosis.
People who are stricken with CFIDS can be traumatized by the experience.
This is made much worse if they don’t have a strong support network. It is
unfortunately very common for a PWC to become very ill and receive no support
from family and friends who believe the uneducated doctors who say that there is
nothing wrong.
The name of the disease also belittles the disease. People hear ‘chronic
fatigue’ and just think the person is tired or lazy. Many PWCs are lucky
enough to have access to the internet which has made a tremendous impact on the
progression of CFS/CFIDS into legitimacy.
As people are educated through this new communication media, awareness is
broadened and suffering is lessened.
RESEARCH
Since Myalgic Encephalitis was discovered and renamed Chronic Fatigue
Syndrome, research in the USA has consisted of proving and disproving a
psychological cause. The criteria for CFS is weak and have made research
difficult to perform accurately. Despite difficulties, it has been discovered
that “true” CFS often involves immune dysfunction. This discovery has
resulted in the unofficial name “CFIDS.” Repeated research has shown that
CFIDS/ME is not a psychological illness so now is the time when research is
really getting interesting. More and more research is proving the underlying
physical problems that are causing
CFIDS. Many theories abound but none have been proven yet. Due partly to the
frivolous name given to M.E. here in the US, research money is very lacking. A
“fatigue syndrome” just doesn’t seem very serious. More research money is
necessary. Like AIDS in its early years, CFIDS is not taken seriously by the
general medical community and the results could be as catastrophic to the
general population if such ignorance and discrimination continues. The US
government is not forthcoming with research dollars needed to understand the
complexity of this disease and to find a cure or universal effective treatment
for this disease.
TREATMENT
Is it really CFIDS?
Whenever someone says that they have been diagnosed with “chronic
fatigue,” “epstein barr” or Chronic Fatigue Syndrome by their doctor, my
first response is that they probably need more testing. Most doctors are
under-educated when it comes to CFS/CFIDS and may diagnose it too easily or may
not “believe” that it is a serious requiring serious symptoms for diagnosis.
Diagnosing “chronic fatigue” is a good way to get rid of a patient because
the doctor may say that there is no treatment and may think that a diagnosis of
any kind will ‘satisfy’ the patient somehow.
The things that doctors hate more than anything are: not knowing all the
answers, having a patient who knows more than they do (or maybe just thinks they
do), or a patient who just disagrees with them especially if they have clear,
logical and scientific reasons why they disagree. That REALLY pisses them off.
The best way for patients to be sure that they have had an adequate
evaluation and have received an accurate diagnosis of CFS, is to find an
educated “CFIDS doc” in their area and/or talk to people with CFIDS (PWCs
online or via a local CFIDS support group) to find out more information. Below
are some common diagnoses that chronically ill people often receive from under-
educated health professionals when they MIGHT actually have CFIDS in addition to
or instead of it:
“Fibromyalgia”: muscle pain disorder that can occur with or without
CFIDS)
“Chronic fatigue”: symptom of many diseases, this is not a diagnosis.
This is a symptom of some problem which can have thousands of possible causes.
“Chronic candidaisis”: problem that can occur with CFIDS or many
other immune system diseases including AIDS.
“Epstein Barr virus”: virus that causes mononucleosis (lymphatic
fever), resolves completely after a few months. Levels of Epstein Barr may be
high in blood tests but do not produce symptoms unless specific testing shows
that it is active. EBV was once believed to be the cause of CFIDS but this has
been disproved. Reactivating EBV can occur in CFIDS.
Chronic Epstein Barr: continuing reactivation of Epstein Barr virus. This
can occur in CFIDS which is why this was the original name for CFIDS and is
still inaccurately used today by ignorant health professionals unfortunately.
Depression or anxiety: These must be accurately diagnosed by a
psychologist or psychiatrist... not the family doctor. These are real disorders
that require treatment. A sole diagnosis of depression or anxiety does not
explain the myriad of symptoms that CFIDS presents. Many doctors diagnose
depression and anxiety when it is really CFIDS because they believe that the
patient is just withdrawing from life... that they WANT to be in bed all day.
Some people with CFIDS do develop depression or anxiety after enduring the
traumatic onset of CFIDS which is severe and life-altering.
Hysteria, hypochondriosis: often used by ignorant physicians who use the
terms completely incorrectly to just dismiss and ridicule the patient who does
not have a popular illness that shows up on an easy blood test or exam.
Hypothyroidism: many PWCs do develop ‘functional’ or secondary
hypothyroidism which is when thyroid tests are normal but hypothyroid symptoms
are present. A sole diagnosis of hypothyroidism would not explain most CFIDS
symptoms.
Often, a doctor may do testing and find a disorder that has developed as
a result of CFIDS such as Epstein Barr reactivation, chronic candidiasis,
orthostatic intolerance and/or hypothyroidism and the physician may just settle
on that single diagnosis without addressing the other symptoms that just don’t
fit with that diagnosis. They may think the patient is just complaining
excessively. Patients who are unlucky enough to have a completely ignorant “just-crawled-out-from-under-a-rock”
physician will often be labelled with just depression or hysteria, etc, or are
just told it’s “all in their heads” a.k.a. “you’re just whining.” It
is possible to have both clinical depression (which should be diagnosed by a
psychologist or psychiatrist) and CFIDS but it is inaccurate to diagnosis
depression as the cause of CFIDS. The theory that psychological problems cause
CFIDS has been proven incorrect.
Although there are dominant theories as to the cause(s) of CFIDS, these
are yet to be proven via research. The realistic initial goal of any patient
should be to try to control the progression of the disease. The illness will
progress if the person doesn’t allow the needed rest. It is possible to ease
symptoms through medication or other therapies. It is also important to identify
and treat any disorders or infections that may be resulting from the immune
dysfunction in CFIDS. There are many illnesses and disorders that are very
common in patients with CFIDS including:
Fibromyalgia (FM): causes disabling pain in joints and muscles. This pain
can result in very poor sleep and depression. It is diagnosed using specific
trigger points and other symptoms. Latest research points to possible immune
system cause.
Neurally Mediated Hypotension (NMH) / orthostatic intolerance syndromes:
diagnosed by a cardiologist using a Tilt Table Test, this disorder is treatable
to a certain extent and can improve overall functioning when treated. NMH is
caused by neurological dysfunction between the brain and heart. Why this is
common in CFIDS is still not known.
Multiple Chemical Sensitivities (MCS) and/or Severe allergies: very
disabling and often dangerous. MCS is the immune system’s violent
over-reaction to chemicals in the environment that would normally be tolerated
such as perfume, cologne, carpeting, car exhaust, new furniture, etc.
Detoxification can often decrease sensitivities somewhat.
Infections: Mycoplasma infection, parasitic intestinal infections,
chronic viral reactivations (Cytomegalovirus, Human Herpes Virus #6, Epstein
Barr virus)
Irritable Bowel Syndrome (IBS) or other digestive disorders: IBS is a
name given to an intestinal disorder that is not understood. It’s cause is
unknown but the result is diarrhea, constipation and pain, etc. Diet changes may
help ease symptoms.
Thyroid disease: such as Hashimoto’s Thyroiditis, the immune system
attacks the thyroid and damages it. This is diagnosed through specific blood
tests. Hypothyroidism is difficult to diagnose because blood tests are not very
accurate but treatment can be given for hypothyroid symptoms such as being very
cold all the time (especially in the extremities, muscle aches, etc.
Like diabetes, CFIDS doesn’t present itself in exactly the same way in
every person because of these disorders that may or may not develop in each
patient. Some of these disorders can be treated but the real tricky thing is to
get a physician to take you (and CFIDS) seriously enough to test you for them.
The bacterial and parasitic infections can be treated with specific types of
antibiotics, the orthostatic intolerance syndromes can be treated with various
medications depending on the individual patient, and various treatments can help
ease the pain of Fibromyalgia.
Finding Health Professionals
Modern traditional medicine has yet to find the “magic bullet” to
cure CFIDS and many of the medications PWCs are prescribed are often too toxic.
Many PWCs have to take very low doses of medication for this reason or they are
just totally unable to tolerate them. The inadequacy of traditional western
medicine when it comes to treating chronic illness (it’s great for emergency
trauma) has led to the new respect in the USA for alternative healing methods.
To get the most benefits from alternative methods of healing including
advice on herbal remedies, it is best to find a reputable and trained health
professional. Osteopaths (D.O.) are the closest to medical docs and can
prescribe medication and do surgery. The ‘osteo’ in their name is from their
ability to perform spinal manipulations. They can be general practitioners or
they can specialize in certain fields just like traditional medical doctors.
Chiropractors are not legally allowed to prescribe medications and do
spinal manipulations to remove any “obstructions” from healing. Many people
go to them for back pain but they can be used for overall healing.
Naturopaths (N.D.) cannot prescribe medications but treat the “whole
person” in a way that is very helpful for chronic conditions like CFIDS. They
are incredibly knowledgeable in healing supplements and nutrition.
Homeopaths cannot prescribe medications but do give pills that contain
minute amounts of substances that supposedly trigger the body to heal itself.
Cher insists that homeopathy cured her of Chronic Fatigue Syndrome although she
now denies she had CFS and that she had “epstein barr.” It is debateable
whether homeopathy is safe for PWCs because homeopathy seems to require some
knowledge as to the cause of the illness being treated. PWCs bodies do not react
like normal bodies either. The cause(s) of CFIDS are not yet known and incorrect
treatment can make PWCs sicker or just poorer.
Acupuncture is an ancient Chinese healing art that is now quite respected
in the US. They use tiny needles in certain points to alleviate “blockages”
to healing or relieve pain. They may also advise you on chinese herbal remedies.
Be sure to go to one who is certified!
Other healers can be employed with success but are not trained to give
advice in supplements and herbs:
Aromatherapy or flower therapists, Massage therapists, Reiki healers,
Acupressure.
Diet
Many PWCs find that making changes in their diet help ease some of their
symptoms. Experimenting with different ways of eating may help.
Eliminating sugar is a definite plus for all PWCs. Sugar causes a sugar
“high” and then causes a drop-off in blood sugar. This drop causes some mild
fatigue and hunger. For those people who are slightly hypoglycaemic, this
drop-off and resulting symptoms are worse. Eliminating candy and sugary foods is
a great idea. Consider switching to fruits (nature’s candy y’know) where the
fructose (fruit sugar) will come with some vitamins! High sugar seems to
suppress the immune system in research and no PWC needs that. It will also feed
Candida yeast which is often growing out of control in PWCs.
Everyone knows that processed foods are not a good idea but being sick
places convenience ahead of health right? Not necessarily. Try cooking a lot of
good foods on days when you’re not feeling too bad and stick them in the
freezer. (Or have your care-giver do it for you... this is important!)
Processed foods usually contain a lot of fat and a lot of salt and very
little nutritional value.
If you’re not a veggie eater, get started. Americans eat horribly bad
and eat very little vegetables. Vegetables are great sources of vitamins and
taste great too. Don’t think they taste great? Well, you will once you start
working them into your diet. You must develop a taste for those veggies you’re
not crazy about (lima beans) and this can be done by slowly adding them to foods
you like. For example, make soup and add some in there for a mild hint of the
flavour. Or, try the hated veggie RAW. Raw is always better for most veggies (although
cooking may ease digestion). If you’re going to cook your veggies, try
steaming in order to make the veggies retain their vitamins and minerals. If you
cook them in water, use very little water or drink it because that’s where a
lot of the vitamins are floating!
Many people eat junky snack foods because they taste good but are also
easy to eat! If this is true for you, chop up some veggies into finger food and
keep them in the fridge for snacks.
That time when you’re feeling a little more energetic, grab some of
those veggies you bought (and like) and start a’choppin and a’baggin!
P.S. Don’t forget man’s best friend! Dogs are omnivores and can enjoy
small pieces of vegetables (preferably cooked for easier digestion). My dog
LOVES his small carrot chunks! Some people find that a low carbohydrate diet
helps them feel better. Some lose fat on a diet like this also. Some common
carbohydrates are sugar, breads, cereal, chips, etc. Having meals where the
smallest portion is the carbohydrate may help keep blood sugar levels from
shooting up and then plummeting. An easy-going version of this diet would be to
slightly reduce how much carbs you eat per meal and slightly increasing the
protein portion (meat, whole dairy products). Eating protein along with
carbohydrates (have your bread with protein-rich peanut butter) will also lessen
the sugary effects of pure carbs.
Many people believe that ‘low fat’ is a healthy diet but this can be
deceiving. If you eat a lot of ‘low fat’ labelled foods, chances are you’re
eating a LOT of carbohydrates in place of the fat they took out. These extra
carbs will turn to sugar and then fat in your body. You’re better off limiting
animal fats and saturated fats and adding more veggies and fruits.
Eating a vegetarian diet has the advantage of being low in chemicals (non-free
range meat is often tainted with antibiotics and hormones) but also low in
animal fats which we all know is bad, bad, bad! But switching to a vegetarian
diet is not just “not eating meat.” It requires you to find alternate
protein sources in order to get the vital amino acids that you need to live.
Education is the key. Learn all you can about vegetarian
eating and maybe even talk to some online before you jump into this way
of eating. If a totally vegetarian diet isn’t for you, just EAT MORE VEGGIES!
(See More Veggies section.)
A yeast-killer diet is a diet that lowers the amount of systemic Candida
yeast in a person’s body. If this is a major problem with you (there is a
blood test and stool test for it), you will most likely crave sugars, breads,
and vinegary foods. If your tongue has a white coating or you suffer from
chronic yeast infections in your groin area (both males & females can have
this) this is most likely a big problem for you. Yeast contributes to pain,
brainfog and food cravings. This temporary diet make a big difference in my
symptoms. Read more about the yeast-killer diet.
Vitamins
You’d really have to be living under a rock not to know what a vitamin
is. However, most people don’t know how to take them and what the best forms
are to take.
Some doctors still believe that a “healthy balanced diet” is all that
is needed to get all the vitamins a person needs. Unfortunately, even if you ate
only natural foods and followed all the guidelines (and who really does that)
you still wouldn’t get all the vitamins and minerals you need. Food isn’t as
nutritious as it used to be due to over farming, etc. The best way to get the
vitamins and minerals you need is through a high quality multivitamin. Such a
supplement would have all the vitamins and minerals in balance for you. It is
dangerous to take massive amounts of one vitamin especially if it is fat
soluable as opposed to water soluable. A fat soluable vitamin will be stored in
your fat and can make you very sick if you take too much. A water soluable
vitamin can be excreted from the body when too much is taken. They must be in
balance except under circumstances where it will be monitored by a doctor.
The water soluable vitamins include the eight B vitamins and vitamin C.
The fat soluable vitamins include vitamins such as A,D,E and K.
You would get a high quality vitamin supplement from a health food store
or a vitmain store... NOT the supermarket! If you take a one-a-day vitamin, it
is not the best. It would be almost impossible for you to get everything you
need from one capsule or tablet and still be able to swallow it whole (gulp!)
Taking a supplement that requires you take a couple of capsules a day to
give you your total daily supply makes it easier for the body to absorb the
vitamins. Opting for a “natural” vitamin is probably the better choice as
well. If the label doesn’t say it is natural, then it mostly likely isn’t.
Also, look for labels that say the supplement contains no sugars and fillers and
allergens.
It is not recommended that vitamins be taken separately because it can be
dangerous. Vitamins are not food. Too much of one vitamin or mineral can mess
with another vitamin or mineral. You can really make a big mess. Taking vitamins
separately should not be done unless supervised by a doctor or other health care
provider who is trained.
Many people with CFIDS take extra Cobalamin (B12) via prescription
through injection, nasal spray or sublingual supplements. With folic acid, B12
helps clear the mind and increase energy if someone is deficient in this vitamin.
It is also thought to protect the nerves. Many PWCs are deficient in B12. A new
type of vitamin B12 is hydroxycobalamin which is difficult to get but supposedly
is better absorbed and utilized.
Many people with CFIDS also take large doses of vitamin C,. Vitamin C is
water soluble and the excess will be urinated out. It is a potent antioxidant
and works to inhibit viruses from attacking cells! Some alternative
practitioners recommend upwards of 1,000 to 2,000 milligrams three times a day.
The form of vitamin C taken can be important. A buffered form will protect the
stomach.
Vitamin A is a fat soluable vitamin and therefore can cause toxic effects
if taken in large doses. There are two types of vitamin A however. A vitamin
supplement can contain vitamin A with a percentage of it being Beta Carotene.
Beta carotene is generally considered a safer form which can be taken at
moderately higher amounts because beta carotene is a precursor form of vitamin
A. It will be stored and wait until the body needs it. Vitamin A has antiviral
properties and reduces free radicals.
Minerals are best taken as part of a multivitamin. The three forms are
chelated, nonchelated and collodial. Chelated minerals are considered to be the
most easily absorbed because the mineral is ‘carried’ by an amino acid.
PWCs are often found to be deficient in magnesium for some reason. It is
important to take calcium as well because they must be taken in balance.
Magnesium helps ease CFIDS symptoms and muscle cramps (Fibro problem). I have
personally had incredible relief from muscle cramps and pain by taking a calcium
magnesium supplement after I was tested and found to be deficient in magnesium.
Vitamin supplementation is needed more by PWCs than healthy people.
Chronic illness requires a lot of resources from the body and these resources
are made available through vitamins. Vitamin C, B vitamins, calcium &
magnesium, and minerals are important for PWCs. Some people say that megadoses
of vitamins help but that is generally not recommended. Again, more is not
better. Vitamins do not cure illness or disease unless the disease is a vitamin
deficiency disease (such as beriberi). Vitamins can help the body fight diseases
though.
Again, it is important to remember that more is not better and many
vitamins can be very toxic if not taken correctly. There are many great books
available to help you learn the safe way to take vitamins.
Herbs
Many people with CFIDS use herbal supplements to ease their symptoms.
Herbal supplements do work if taken carefully, correctly and in an educated way.
The problem is buying an herbal supplement that is high quality and free of
other additives or herbs which may not be on the label. If the label doesn’t
say natural, then it probably isn’t. Look for labels that state that the herb
is “standardized.” These are more expensive but you can feel more confident
that you’re actually getting some herb in your herb!
There is a controversy as to whether the FDA should regulate supplements
(which are now considered just “food”). This may limit availability but it
may improve purity. The best thing to do is to buy large well-known brands. The
“nature” brands or brands which have their own large stores (vitaminshoppe,
puritan’s pride) are generally more well known. Cheaper isn’t necessarily
just as good!
Don’t take herbal “prescriptions” from someone who is also trying
to sell you something. The store clerk at the health food store (unless he/she
is a certified nutritionist) is not allowed or qualified to recommend
supplements for your ailments. Also, beware of online “good samaritans” who
state that they’ve been miraculously cured and just want to sell you some
supplements out of the goodness of their heart (see Cure Scams section).
Purchase a herbal medicine book and look up your individual symptom. If you find
a book that lists diseases and conditions... beware. CFIDS is still not well
understood by most health professionals and their advice may make you worse.
The common advice in such books for “Chronic Fatigue Syndrome” is
taking echinacea or some other immune stimulant. CFIDS usually involves a
dysfunctional chronic immune activation and will be made worse through the use
of such herbs (unless you are fighting off the flu or a cold and only take it
for a short time).
Remember that herbs are the precursors for most of our traditional drugs.
More is not better just like with medication.
Herbs are medicinal and some will interact with medications.
Each person may react differently to each herb or may even be allergic.
Be sure to do your homework and consult a health professional who can help you.
Always add herbs to your regimen one at a time. Don’t go and buy 5
different herbal supplements are start taking them all at once. You need to do
one at a time giving yourself at least six weeks to see if it is helping or
maybe harming you. You could be allergic, sensitive or it may just not help you.
It’s best to find this out first. It will save you money too.
Herbs/supplements that some PWCs may take include: CoEnzyme Q10, valerian
root, melatonin, Enada NADH, ginger, MSM, glucosamine chondroitin, Pau D’arco,
Acidophilus/Multidophilus, etc. Each PWCs regimen will be at least slightly
different due to different symptoms. Do not start popping herb capsules
haphazardly. Get a book and talk or email other PWCs (who are not salespeople)
and ask them what has worked for them with the symptom you want to treat. In
addition, contact a health provider who can help you!
Medications
Most people with CFIDS will have problems taking the normal doses of
medications. Which medications you take obviously depends upon which symptoms
you are treating. It is a good idea to buy a book that lists medications and
their side effects.
It would also show which medications should not be taken with other
medications. Don’t put your health squarely
in the hands of a doctor. It’s YOU who will end up very ill or dead... not
your doctor.
A big medication that is tossed at PWCs rather easily are
antidepressants. It is still not understood how antidepressants work and yet
they are being prescribed for more and more problems. They are often quickly
prescribed for PWCs because chronic fatigue syndrome was once thought to be
caused by or perpetuated by depression or some other psychological illness.
(Some psychologists doing research are still pushing the “mental” label.)
Quite often, PWCs who do not need antidepressants are put on them because their
symptoms are misdiagnosed as being depression. There are a few different kinds
of antidepressants which act in different ways. PWCs usually take them in very
low doses and sometimes it is possible to decrease pain or some fatigue or ease
some sleep problems through the use of the antidepressants. Some PWCs use
antidepressants for depression too if they have developed that. These brain
drugs can also cause some nasty side effects so use with caution.
PWCs with Fibromyalgia may benefit from muscle relaxers, pain killers and
sleeping pills if they have problems sleeping or getting restful sleep.
PWCs diagnosed with Neurally Mediated Hypotension (by a CFS-educated
cardiologist) using a tilt table test, will often be prescribed Florinef,
Midodrine or beta blockers. An increase in salt and water intake might help too.
Stimulants are generally seen as something to be very careful with. A
stimulant may result in false energy resulting in an overexertion. A stimulant
drug will not fix the energy production problem and other problems in CFIDS and
stimulants are usually avoided by most PWCs.
A strong medication that has been used for CFS by some patients is Low
Dose Oral Interferon Alpha. Interferon is used for treating other diseases at
high doses with success although often difficult side effects. There have been
no studies done on the benefit of Low Dose Oral Interferon Alpha for CFS. Some
patients have reported success. Hopefully this treatment will eventually be
researched for efficacy and safety.
The most widely known medication of the future for treating CFS is
Ampligen which is currently undergoing FDA trials for the treatment of CFIDS. It
is an antiviral drug which would be given intravenously for an extended period
of time and seems to improve CFIDS patients. Hopefully this drug will officially
be found to be helpful and will be approved for use soon. Some patients have
reported success.
There are many drug possibilities in CFIDS which are often only obtained
if the PWC has a helpful and educated doctor at his/her disposal. There is no
cure or any drug that eases CFIDS as an entity but there are drugs to treat some
of the symptoms. It may take a lot of trial and error in order to find the right
medications that can be tolerated. As long as they are used carefully,
medications can help make life with CFIDS a little more bearable.
Cure Scams
You may have heard it already or you will hear that there is some “amazing
new treatment” or a “cure” for chronic fatigue syndrome. If someone is
trying to sell you a cure, they are trying to take your money. There is no magic
bullet supplement, drug or vitamin that will cure you of CFIDS, but it will cure
you of your fat wallet very quickly. If you know and trust someone who believes
they can cure you with an herb, vitamin or some other treatment, listen to what
they have to say. They may honestly believe that they have been cured by a
treatment and mean you no harm. There is no single complete cure yet, but if
this sounds like a treatment that you want to try (it might help you improve,
many do) ask PWCs in your support group or on the online newsgroups. There is
always someone who has tried the treatment you are interested in.
Never EVER take treatment advice from Multilevel marketers (MLM) who sell
supplements or vitamins. Not only is it illegal for them to give you such
advice, it is dangerous for your health. Especially online, there are
salespeople who send out emails to people who subscribe to newsgroups, or who
have websites and they literally PRETEND to have cured themselves of CFS using
certain supplements or vitamins.
And, of course, since these supplements are so miraculous they started
selling them too! Out of the goodness of their heart they will sell you the same
herbs and vitamins you can get at a local discount vitamin store but they’ll
sell it to you for twice the price! Aren’t you lucky?? They’ll sell you
drinks, herbs, vitamins, programs, diet powders, etc. Some of these may help you
feel better but the prices are hardly ever worth it and I would never buy from a
sleazy salesperson who would pretend to be ill to make a buck. Also, you can
never be sure that what you’re getting is a quality product.
Many companies even fake research they’ve done on their products. Many
online salespeople get nasty and mean and use harassing techniques to guilt sick
people into buying their vitamins or herbs. I have personally been targeted (and
other PWCs have also) by onlin MLM salespeople in the past and I found it to be
very upsetting and scary.
Desperately ill people are easy targets. PWCs often are given no
information from their uneducated doctors and they will believe anyone who will
give them a cure... real or not. The best thing to do is take advice where it is
free... no strings attached.
