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Chronic
fatigue immune dysfunction syndrome
A personal CFIDS management plan & advice
Firstly, it has to be
noted that there is no known cause or cure for CFIDS.
It has taken me years
of research, trial and error, and living with CFIDS to come up with the
following plan to treat and manage my own CFIDS.
It is my theory that it took years of unhealthy (or inappropriate) living to get
myself into this condition, so it will take a long while of very healthy living
to get well again.
Like asthma or diabetes, CFIDS is with us for the long term, and comes and goes
in cycles of varying severity - but it is manageable!
I can highly recommend:
Chronic
Fatigue Syndrome: A Treatment Guide
by Verrillo & Gellman
By examining my own symptoms of chronic fatigue, recognising the cycle of CFIDS
and the triggers that set off attacks, I can recommend the following:
| Pathology
Know yourself inside and out |
* It is
strongly advisable to do the following pathology tests: celiac, gluten,
candida, vitamin & mineral deficiencies, blood sugar, diabetes,
thyroid, epstein barr virus, herpes virus, other virus as appropriate to
your area (such as Ross River fever in Queensland Australia), liver
function.
* Have an endoscopy and colonoscopy, looking for hiatus hernia,
ulcers, polyps and haemorrhoids.
* The University
of Newcastle Collaborative Pain Research Unit Information Service in
Australia does an excellent (but expensive) pathology test to diagnose CFIDS.
* If the pathology comes back positive to any of the above, seek
proper medical advice to treat the specific illness.
* If all these come back negative, don't despair because you
haven't found what's wrong - it's good that you don't have any of the
above wrong with you! You're not the only one in this position -
this is what is baffling the medical profession - pathology shows that
everything is fine, yet the patient is obviously unwell. |
Site Index - Health
Books Index - CFIDS definitions
Alkaline diet - CFIDS
Symptoms - Top of this page
| Stress
Learn to say no
Learn to let go
Go with the flow
Easy on the ego
Be gentle with yourself! |
* Probably the
greatest single trigger, and one of the hardest things to eliminate from
our life - particularly "OPS" (Other People's Stuff).
* ELIMINATE STRESS (or reduce it as much you can).
* Take time out for yourself, get into yoga,
meditation, examine your career path (the world will still turn without
you, and will still be there if you take some time off), learn to say
"no" to stressful situations such as deadlines,
confrontations, or being around lots of hyper-active people.
* Stressful relationships are often cited as a major cause and
trigger for relapse - learn not to create drama in your life, "go
with the flow".
* CFIDS is prevalent amongst high-achievers - Learn to let go
(until you're well again).
* Create a file called OPS - Other People's Stuff. Other
people's stuff will still be there for them when they come back for it
:) Don't take it on.
* Give up watching horror movies, playing nuke 'em computer games,
extreme sports, unrealistic deadlines, thriving on adrenaline and being
a super hero! You will probably notice some positive results in a few short
weeks, but remember that overcoming CFIDS may take many years. |
Site Index
- Health Books Index - CFIDS
definitions
Alkaline diet - CFIDS
Symptoms - Top of this page
| Diet
No more beer and pizza - you're
on a wholefood diet now. |
* Definitely a
trigger of the symptoms - poor diet. By poor diet, I mean
'inappropriate diet' for the CFIDS condition.
* Take lots of vitamins A, B, C, and E - all these are found in
fresh fruit and vegetables.
* One of the best investments I've made was in a juicer. A glass
of carrot, apple and beetroot juice as a starter with meals is a natural
liver detoxifier, and can help reduce the desire for large helpings of
meals. The
Juicing Bible by Crocker & Eagles has juice recipes specifically
for CFS.
* Eliminate the following from your diet: wheat (replace the wheat
staple with rice); flour based foods (cakes, pies, etc); diary (milk,
cheese, yoghurt, etc); coffee; smoking; alcohol (I allow myself a glass
or two of red wine every week as my treat, but otherwise I have a zero
tolerance of alcohol); fats; oils (except virgin olive oil); processed
meats such as salamis; spicy foods and toxins. Limit the animal
proteins in your diet. No more beer and pizza - you're on a wholefood
diet now.
* Spend less time shopping in the delicatessen and more in the
fruit and vegetables shop. Olives are the only thing I buy from
the deli nowadays.
* Go on an alkaline
diet, after all, we are an alkaline species. A Pritikin
diet may also be helpful.
* If symptoms are severe, I can recommend a bland diet of steamed
vegies and rice, sprinkled with LSA (linseed sunflower and almonds)
though go easy on the nuts if you have piles, hernia or gut
disorder. The use of probiotics to balance the gut flora is
recommended especially after a course of antibiotics. Use live
probiotics in capsule or cultured drink rather than yoghurts if you are
off diary. Research shows undenatured Whey is proven to help
sufferers. Those muscle builders powders are $100 for 1.5 kg, so
keep an eye on the health food stores to pay less than a tenth
that.
* After eliminating those things mentioned above from your diet,
and you're on the road to recovery, gradually introduce those things
which you feel comfortable eating, back into your diet one at a time. If you have
any reactions, remove the offending ingredient permanently from your
menu. |
Site Index - Health
Books Index - CFIDS definitions
Alkaline diet - CFIDS
Symptoms - Top of this page
| Toxins
Read the label.
A water filter is a great
investment in your families' health. |
* Food
additives - people often have reactions to additives, a
full discussion of food additives is here. Eliminate ALL food
additives.
* Herbicides, pesticides and fungicides - buy organic, or even
better grow your own (it's a great hobby for people recouping from this
illness). Eliminate ALL suspect food. Wash all food before
cooking.
* Chlorine in water - the government does
a good job in removing bacteria from our water supply by putting in
chlorine, but we really need to remove it before drinking, cooking with
it, or showering, bathing and swimming in it.
* Take a shower and wash your hair immediately after swimming in a
chlorine pool.
* Invest in a water purifier or filter,
and take bottled water from it with you when you go out.
* Have at least eight glasses of your pure water every day, to
flush out toxins from your body.
* Chemical cleaners - check out alternative
cleaning products. Cheap white vinegar and/or soda bicarbonate
cleans most things.
* Make your house toxin-free!
E.g. Don't burn incense or petroleum candles!
* Grow indoor plants which
helps remove unwanted toxins from the air! |
Site Index - Health
Books Index - CFIDS definitions
Alkaline diet - CFIDS
Symptoms - Top of this page
| Exercise
Don't take chronic fatigue
laying down! |
* Both ends of
the scale are inappropriate for CFIDS - too much or too little exercise.
* When you are feeling up to it, go for walks. The
metabolism has suffered badly with this illness, so exercise when you
can. Most doctors and CFS studies recommend gentle exercising as
way of healing the body and raising the metabolism.
* I start every day with gentle stretching and yoga.
Here are some good stretches.
I thank god for yoga otherwise my body would have seized.
* Usually my mornings are bad, however after my midday siesta I
feel well enough for a walk. A walk helps to take your mind off
things. I began collecting eagle and other feathers, and sea
shells and interesting pebbles for my garden during my walks.
* CFIDS is prevalent amongst athletes - do you need to slow down
and take some time out?
* At it's most severe stage, all I was capable of was sitting in a
rocking chair.
* Be gentle to yourself! Know your limits and be aware of your
body. |
Site Index - Health
Books Index - CFIDS definitions
Alkaline diet - CFIDS
Symptoms - Top of this page
| Use Your
Down Time Productively
|
* I studied and
began web design because of my inability to go out and work for a
living. (Just don't get caught up in any internet scams and get up from
the computer regularly to do something else!). Now I have a
successful home based business, managing internet sites on my hobbies, because of my illness!
* Other suggestions for activities include: learning to play a
musical instrument; correspondence courses (career or hobby); yoga
classes (to learn the techniques to do at home); vegetarian cooking
classes.
* Perhaps you can do a course of study in a business that you can
operate from home, such as fixing or repairing electronics (or
anything); desktop publishing or other computer work; mail order;
etc.
* Suggested hobbies: aquarium, aviary (bird keeping), collecting,
plane spotting, gardening
(grow organic vegies and herbs and indoor
plants), reading, interior design (make
your house toxin free and a pleasure to be in), cooking,
creative writing, learning about religion or spirituality, join in at
the online clubs in areas of your interests, art - sculpture, drawing,
painting, etc.
* Look for short courses or
correspondence courses which you can do at your own pace, rather than committing to anything long term (such as a
college degree) which you have to attend regularly, and which involves the
pressure of deadlines.
* There are been many cases of people becoming so motivated with
their new activity that they've recovered more quickly, and even
completely recovered.
* If all this seems too much, it's OK - take the rest that you
need! Read a good novel - try and keep a positive outlook on life. |
Site Index - Health
Books Index - CFIDS definitions
Alkaline diet - CFIDS
Symptoms - Top of this page
| Research
and Read
You are responsible for your own
health. |
* You are
responsible for your own health, particularly with this illness, as the
medical profession has yet to figure the cause or cure for chronic
fatigue immune dysfunction syndrome.
* Here are some definitions of CFIDS
and glandular fever.
* Once you have identified the
symptoms and triggers in your life that set off the CFIDS, and begin
to take steps to reduce those triggers, you are well on the path to
managing your illness.
* A doctor recently told me "I have my health because of my
illness". He was a sufferer of chronic asthma, and in
researching his own illness he became so involved in medicine that he
became a doctor! Now that he understands his own medical
condition, and has eliminated the triggers and has a much better
approach to his health (diet, exercise, stress control, etc), he is much
healthier than the average person. |
Site Index - Health
Books Index - CFIDS definitions
Alkaline diet - CFIDS
Symptoms - Top of this page
| Depression
Smile and Be Happy!
Laughter is the best medicine!
Be gentle with yourself!
If you want to be happy - be
happy! |
* Depression is
a symptom of CFIDS
in many cases. If you suffer from depression, be gentle with
yourself!
* It is my firm belief that anti-depressants are OK for the short
term, but they only put a band-aid on a much deeper problem and don't
come to terms with the real issue. These are my views on Prozac, St. John's Wort and Kava.
* If you are going to take anti-depressants, ask your doctor about
the new generation SRII such as Cipramil, and never mix them with St
John's Wort.
* Do some counselling! Even do a course in counselling so
that you can re-examine your life and identify issues that are causing
the depression.
* I can recommend a book by His Holiness Dalai Lama called The
Art of Happiness: A Handbook for Living. His Holiness says
that the answer to the eternal question of the meaning of life is ... to
seek happiness!
* If the fact that you have CFIDS is causing depression (and why
wouldn't it?!) learn to cope with your illness
and remember that you WILL become well again.
* Learn to laugh at your illness:
- Isn't it really funny that we go into a room and forget what we
came in for, was it to eat or call someone?
- Now where did I park the car - or did I catch a taxi?
- Lifting my arm was so much of a chore - imagine when I had to
get up - I used to launch myself out of bed and hoped that I would land
on my feet!
- Now I know what it's like to be 90 and senile!
- I can see the light at the end of the tunnel - is that a train
coming?
- I feel like the star of the movie "Groundhog
Day", and that I'm doomed to keep repeating the day until I get
it right!
- I'm not taking CFIDS laying down!
All these things are really funny! Laugh at it and it becomes
easier to endure. |
Site Index - Health
Books Index - CFIDS definitions
Alkaline diet - CFIDS
Symptoms - Top of this page
| Symptoms
It is important that you see a
doctor to discuss treatments for specific symptoms - these are
suggestions born from experience |
* A rule of
thumb here is to rest when you have to, be active when you can. It
is important to try and exercise (walks, even a rocking chair) when you
can, keep a positive attitude, remove all toxins and acidic food from
your diet, and avoid stress.
* Depression -
undertake counselling. Remember that what you do and what you
think about directly controls how you feel physically and
mentally. If you do nothing except lay and think about your
troubles, you will only make matters worse.
* Muscle aches and twitches - stretching exercises, yoga, and
calcium / magnesium supplements (every few hours, particularly in the
morning and before bed).
* Headaches - Lay down in a dark
room and meditate.
* Mental fog - is only short term (maybe even a few months).
Probably the result of a lack of R.E.M sleep.
* Gut problems - probiotics (available at most pharmacies)
replaces the natural good bacteria in the gut. Also look at the
alkaline diet as a long term solution to gut problems.
* Sleep disorders - My CFIDS specialist suggested that I trial
melatonin (the natural sleeping tablet) together with a muscle relaxant,
to get a better quality sleep. I followed this for a month, but
found the side effects to be too uncomfortable - it may be worthwhile to
discuss this approach with your doctor however. Now I have calcium
magnesium tablets before bed to ease the muscle twitches. I try
and sleep during the night, but I don't fight it if I can't. If I
can't sleep, I read or work on the computer. |
Site Index - Health
Books Index - CFIDS definitions
Alkaline diet - CFIDS
Symptoms - Top of this page
| Avoid
the "get well quick" schemes
and "get well soon"
|
* We're
conditioned in the west to expect the treatment of an illness in a
pill. "Take this twice daily and you'll be well in a
week". Not necessarily so!
* It
is my theory that it took years of unhealthy (or inappropriate) living
to get myself into this condition, so it will take a long while of very
healthy living (diet, exercise, toxin-free, stress-free, etc) to get well again.
* Like asthma or diabetes, CFIDS is with us for the long term, and
comes and goes in cycles of varying severity - but it is manageable if
you take control of the levels of stress and exercise, your diet and the
levels of toxins entering your body.
* Avoid the disappointment (financial and emotional) of "the
new and latest treatment of CFIDS" as advertised on the internet
and in the media - at present there is no "get well quick"
scheme, and these are often "get rich quick" schemes sold by
human vultures preying on the sick.
* If it sounds too good to be true - it probably is!
* I include this advice because I was desperate enough to pay
charlatans in the hope of getting health back, and ended up as a witness
in a ACCC Federal Court action because of a bogus doctor and his claims
of 70% success rate.
* It cost $80 from my pension for a naturopath to hook me up to
one of Cayce's devices. Avoid colloidal silver! |
Ok - so your thinking
that following the above plan will leave you living like a monk - but ask
yourself, do you want to take charge of your life and health or risk becoming
sicker or prolonging the illness?
Personally, I'm prepared to take the time out, make some sacrifices in the short
term, stick to the regime above and heal myself, and rejoin the race when I've
recovered.
I'm not about to make any wild claims about the effective of this management program, but after following it, it has enabled me to slowly rebuild my life
after being bed-ridden for a year, and house bound for 3 years.
My specialist says that I've come further in three years than many of his CFIDS
patients have in ten years. This last Christmas he said that I'm at the
stage now where I could literally wake up one day and it's all over!
Remember CFIDS could have been worse - it could have been cancer or a heart
attack - consider having CFIDS like a big wake up call to an unhealthy lifestyle
- and MAKE SOME CHANGES!
References: The
Juicing Bible by Crocker & Eagles
The
Art of Happiness: A Handbook for Living by His Holiness The Dalai Lama
Chronic
Fatigue Syndrome: A Treatment Guide
by Erica Verrillo, Lauren Gellman
* Words of Wisdom * Site
Index * Health Bookshop
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Disclaimer:
I am NOT a medical professional.
I am a CFS - EBV sufferer who is relaying some of his experiences and
opinions. None of the information on these pages is to be construed as medical advice.
Please see a doctor for such advice. Due to the nature of my illness, I am unable to work for a
regular employer in my former occupation as a journalist, and have started this Website, it's mirror
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