Home
Linda my old live
Linda now
Brainwaves
van Linda
T.I.M.
Porfyrie
M.E.
Ambulance
Medicijnen

ME – INFO

 

 

      

Inhoud

 

A-specifieke klachten

Griep-symptomen

(Auto)Immuunproblemen

Ingewanden

Laboratorium testen

Mentale problemen

Neurologische en myologische verschijnselen

Pijn

Vermoeidheid

Zintuigen

ME-criteria volgens London

de Holmes et al. criteria

Namen in medische literatuur

What is C.F.I.D.S.?

 

De onderstaande lijst is een totaaloverzicht van MOGELIJKE symptomen.

   Het feitelijke klachtenpatroon varieert van moment tot moment en van patiënt tot patiënt.

A-specifieke klachten

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

 Griep-symptomen

  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

 (Auto)Immuunproblemen

  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

 

 Ingewanden

  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

 

 Laboratorium testen

bloedarmoede

 abnormale creatinine-levels, leverenzymen, urinezuur

 

 Mentale problemen

 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

 

 Neurologische en myologische verschijnselen

  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

 

 Pijn

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)

 

 Vermoeidheid

  uitputtingsverschijnselen

 snelle vermoeibaarheid en gebrek aan uithoudingsvermogen

 extreme vermoeidheid

 terugval na inspanning (inspanningsintolerantie)

 

 Zintuigen

  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)

Inhoud

 

ME-criteria volgens London

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.

Inhoud

Namen in medische literatuur

  (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

Inhoud

 

What is C.F.I.D.S.?

(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.

Inhoud