DOM'S
NEWSLETTER
October 26,
2009
A Christian-based newsletter for people with Fibromyalgia
(FMS), Chronic Fatigue & Immune Dysfunction Syndrome (CFIDS), or Myalgic
Encephalomyelitis (M.E.) and their families.
17 TOPICS - don't miss the RED
ONES
1. READERS
WRITE
"God bless you for caring about all our problems.
You are the only one I feel that truly knows what I'm going
through."
"Thanks again for making all of this info
available to us!"
"When people tell me that I look good, little do they know
that I may look good on the outside but I'm screaming out on the
inside. I call it my monster
within."
"I am amazed at the care you take to help us all, I have
no idea how you do it and I am a newbie. I have spent so much money and
time on things and doctors that it seriously messed up our lives. Eventually we
had to declaire banckruptcy. The money that doctors, pharmacies
charge is at times staggering. But for me the biggest price was always the
death of another piece of my soul. Another failure that
will allways exist haunting any possibility of actually having hope again.
Each time we throw ourselves into the battle and each time we lose a part of us
dies. I don't know how to put a price tag on that."
"Your newsletter give us lots of news, and I check
every day to see if you have new news."
2. DEALING
WITH HURTFUL COMMENTS ABOUT FIBRO
From a reader--
"i had emails from 3 of your readers regarding my friend's
hurtful comments. One reader suggested i write to my friend explaining just how
much her words hurt me/hurt all of us. I did just that - and my friend actually
thanked me!! Isn't that wonderful? She said that she really
didn't realise how much she was hurting me - that she thought she was
doing the right thing.. She ended by saying if she slips
up and starts to say the wrong thing again to kick her in the pants. Lol. I
doubt i would be quite that drastic - but i certainly would be putting her
right. On closing Dom, i would firstly like to thank you
and your dear readers for the support during that horrid time and also i
wondered if you would like a copy of the letter i sent so as to put it in the
newsletter - in case it might help anyone else in a similar
situation??"
FROM DOM: YES!!!!! I
asked this reader to please send the letter!!! I need this
too!
3. SICK FROM FLU
SHOT
From a reader--
"Because of the new grandbaby and his "fragileness", I got
a flu shot last week. I have been sick ever since. And was fine till I got it.
Afterwards I had a 3-day headache, severe aching all over, chills, have
developed a cough, and generally feel like I've been run over by a herd of
buffalo. Mom (83) took one too, and is fine. The swine flu vaccine... not a
chance."
4. DR. KLIMAS ANSWERS QUESTIONS
ABOUT XMRV & CFS
From a reader--
"The
NY Times has been following up on the XMRV story. Here’s a link where a doctor
answers a few questions from readers:
From a reader--
This is from CDC’s
site:
http://www.cdc.gov/h1n1flu/qa.htm
“The symptoms of
2009 H1N1 flu virus in people include fever, cough, sore throat, runny or
stuffy nose, body aches, headache, chills and fatigue. Some people may have
vomiting and diarrhea. People may be infected with the flu, including 2009 H1N1
and have respiratory symptoms without a fever.”
Seems that a sore throat and stuffy nose isn’t
just for colds with this one.
FROM DOM: Sorry I did not include
these symptoms on a chart of a COLD vs. H1N1 sent out
earlier.
6. QUESTIONS &
ANSWERS ABOUT THE XMRV RETROVIRUS
From a reader--
http://www.wpinstitute.org/xmrv/xmrv_qa.html - XMRV QUESTIONS AND
ANSWERS
http://www.wpinstitute.org/news/news_current.html - In
The News - October 9, 2009:
Detection of an Infectious Retrovirus, XMRV, in Blood Cells of Patients
with Chronic Fatigue Syndrome (Science) - many sources
listed
Reader
response--
"I have
suspected for a long time that it is a viral problem because the symptoms are so
'fluish' and the fever comes back over and over...for
years."
Reader's question--
"Does XMRV cause
fibromyalgia?"
FROM DOM: Fibromyalgia was mentioned in the second
question answered in the site above--
"What is the link between XMRV and ME/CFS,
fibromyalgia and other neuro-immune diseases? - Our initial research showed that 67% of the ME/CFS patient samples tested
positive for XMRV. Further work has found that 95% tested positive. Work
continues to understand how this virus works within neuro-immune diseases, but
this discovery proves a significant correlation between this serious retrovirus
and these diseases. Our work suggests, but does not prove, that XMRV may
be the underlying cause of ME/CFS. Much additional work needs to be done to
understand how XMRV causes disease and what types of diseases it is linked to
it. A few fibromyalgia samples were tested and yes, they were
positive. However the sampling was very small, and testing will
have to continue on a much larger scale to begin to draw significant
conclusions. In addition, many patients with ME/CFS have been given the
diagnosis of fibromyalgia when in fact they have ME/CFS and
fibromyalgia."
FROM DOM: I have long
believed that FMS/CFIDS/ME was caused by a virus. I have a lot of info on
my site at www.fms-help.com. I have had FMS since 1982 www.fms-help.com/fibro.htm - it
happened overnight in June 1982 when I was 30. Five years later in 1987, I
developed CFIDS www.fms-help.com/fatigue.htm
after a very nasty virus (symptoms where 6 months of illness, bronchitis and
eventually pleurisy). I did not get relief from pain and fatigue until
1996, when I began discovering things that helped me (see my list at www.fms-help.com/what.htm).
Everything was going pretty well until 2004 when I worked for a year in toxic
mold www.fms-help.com/mold.htm,
and I think my immune system became damaged. However, 9 weeks ago, a
reader told me about stabilized liquid oxygen. I am now feeling
NORMAL. Have been through a lot of stress and work lately - I am a piano
teacher and church musician. We just had our School of Music fall
recital for 30 students and this week is revival at our church,
and I am still feeling fine! Viruses can't live in a high oxygen
environment. My husband always said it was like oxygen wasn't getting to
my brain, but I didn't know what else to do. I was using powerful
antioxidants and they helped for awhile, but it still wasn't enough to
permanently get rid of the brain fog and debilitating
fatigue.
7. HEMOCHROMATOSIS?
From a
reader--
http://www.rense.com/health2/fibro.htm
- >Fibromyalgia?
CFIDS? or Hemochromatosis!? (iron overload)
8. SWINE FLU &
FIBROMYALGIA
From a reader--
"I was just wondering if you knew of anyone with
fibromyalgia that has had the swine flu? I am very wary about getting the
vaccine, but I would like to know if the actual flu is hitting fibromites any
harder than the regular flu."
FROM DOM: In a recent
newsletter I had a video clip of a doctor on the news who said people with
FMS/CFIDS should NOT get the swine flu shot or disastrous consequences could
happen. Have any of my readers with FMS/CFIDS had the swine flu or the
swine flu shot? If so, how are you doing? A few horror stories
from readers have come my way already.
9. HYPERBARIC
OXYGEN
From a reader--
"Only one person answered my question you
put in your newsletter a few weeks ago on my behalf regarding hyperbaric oxygen
therapy......maybe other people tried it and got well ??? I have my doubts
about that. She had 6 treatments with no improvement in
symptoms. The Dr I have seen is recommending 40
treatments to get results @ $200 per treatment! I cannot afford that sort
of money. If it was a known cure, well yes I would borrow the money and go
for it. It is also 50 miles away from where I live, I
have exactly the same problem traveling very far in a car as you do with
the constant stimulus to the brain with moving objects, shadows etc and have to
lay back in the passenger seat with an eye mask on to keep out any sensory
input. Then I'm exhausted when I get there. Driving myself for
anymore than 20-30 minutes is too much and I suffer for days and have to lie in
a dark room to recharge my brain."
FROM DOM: Sounds like I
have a twin out there. Seriously, I am very happy to report that the
oxygen drops have relieved me of the brain fog and debilitating fatigue - I have
had 9 weeks of normalcy! In the next week or two, I would like to make a
trip to my mother's house (51 miles away) to see if I can travel
again. It has been several years since I
have been able to drive more than about 25 minutes without the same symptoms
this reader has. All of my sensory input problems began after working for
a year in toxic mold in 2004-2005 www.fms-help.com/mold.htm, but I
feel normal now with the drops (they alkalize the pH and oxygenate the body - I
feel like oxygen is getting to my brain now - also oxygen kills viruses).
It's great to feel like a normal person.
10. VACCINE REACTIONS DISMISSED AS
COINCIDENCE
11. A
WARNING FOR DOM
Good advice from a reader--
"I am so glad that you have been doing so well for such a
long time. (Well, to us "sickies", 10 weeks of normal is extremely
long). I just want to encourage you to be extra vigilent to not overdo
it. I am hoping and praying that your improvement will continue to
hold.
After being sick initally (not bedridden, but unable to hold down even a
part time job) for almost two years, I improved and thought I was
entirely well for about 6 months. I thought it was a result of some
homeopathic treatment I had been receiving (which involved homeopathic remedies
and also me being diligent to keep my urine ph on the alkaline side, like
your oxygen drops help you do) only to later relapse into a state
that was so much worse than the initial illness.
Because I felt better, I had not been diligent about my
homeopathics, supplements and maintaining my urine ph, and I had been under
a lot of stress (moved, painted my house, had a flooded
finished basement that I did the clean up of myself, including
removing carpet padding and drying out the carpets within 24 hours to prevent
mold, etc). I had some help from my husband and kids, but they all thought
I was back to normal, too. I obviously did not realize that I was not completely
well and did much more than my body could handle.
The relapse was two years ago and it left me bedridden (up only to
use the toilet) for about a year (and jealous of cancer patients, who in my
mind, were lucky- #1, to have a diagnosis that was taken seriously and #2, at
least if they don't get well, they get to die. The Lord has since
shown me the error of my ways with that attitude, but I
am only being honest about how I felt to let you know
how sick I was). I am currently housebound and coming off about
two months of semi-bedridden misery. (I am on sodium chlorite,
too. Spotty use at first, because even 1 drop caused extreme fatigue.
But I have been able to work up to 3 drops at a time and have been doing that
amount several times a day for about 4 weeks now and I think I can feel
some improvement. It has helped clear my fog and I don't feel as
sick.
Please don't misunderstand, I am not trying to discourage you or "burst
your bubble" I am just cautioning you to be extra
careful for at least the next year to give your body a chance to
"hold" your good state. According to Dr. Cheney, it takes your body at
least a year or more to get used to being well again because of being sick for
so long (something to do with cell signaling factors).
I would encourage you to ask your husband or someone else to help you
stay accountable and close to your "pre-normal feeling"
boundaries, increasing activity levels at small increments and holding
those increases for at least three weeks at a time before bumping the increment
up a little more. Again, I am so happy for you and I hope that you
can continue to feel normal. It gives the rest of us great hope. I
hope I can have similar results some day. My body has a lot further to go
than yours did at the time you started your drops so it may take me quite a bit
longer."
FROM DOM: Oh my! I should have
heeded this reader's advice! I have been feeling great for 10 weeks with
the oxygen drops that tried to push the envelope last week to see how my body
would cope. Here's what went on: the usual with teaching my music
students, 5 revival services at church with Dr. Bill Stafford (which were wonderful), Friday I
drove a 90 mile round trip to a piano store in Jacksonville, Saturday I ran
errands all over town with my husband, Sunday I played for 2 services plus we
had a choir/orchestra rehearsal for a big program that is coming up. What
threw me under the bus was that I waited too late Saturday night to do my
last minute practice for Sunday services. That got my brain wired, and
even with sleep meds, I didn't sleep much Saturday night - a baaaad way to start
a busy Sunday! Today is Monday and I feel really wiped out. I have a
lot of students today. Sleep is a VERY important part of our health and
well-being. Read my insomnia story at www.fms-help.com/insomnia.htm (my sleep disorder began at age 16 - I am now 57). I
now realize that I need to pace myself and keep to a reasonable schedule.
Other stressful things - like troubled relationships - also gobble up a lot of
ones energy reserves. We all have to take really good care of ourselves to
live with FMS/CFIDS. It's like a computer program always running in the
background, no matter what you might see on the screen! (Hope everyone
gets this analogy.)
11. NEGATIVE EXPERIENCE AT A
FIBRO & FATIGUE CENTER
From a reader--
"I just wanted to mention my experience
with the Fibro and Fatigue Center. I went to one for almost a year. I felt the
staff and the doctor I saw were wonderful people who seemed to really care about
each and every person that walked through the door. But what I suspect is that
each doctor is put through a training progam and they are then told to push and
I mean really push the supplements that they sell. By the time I stopped going I
was on 53 (yes 53!) supplements. I think I spent about $7,000 between infusions,
visits and supplements. The supplements were outrageous. They were extremely
expensive and I never felt that any of it made me feel the least bit
better. To be honest some just made me sicker. And none of this is covered
by insurance for most people. I feel that they take advantage of people
that they know are willing to try anything and that they really don't have a
clue about how to really help this illness. Some of the supplements made sense
but others I questioned and just wouldn't take. How could any one person need to
be on 53 pills a day? What really bothered me the most was that they
ran tons of blood test and told me all these things were off like my
testosterone and hormones etc. When I left them and went to my regular doctor he
could not fathom how they came to some of the conclusions they came up with. I
had him repeat some of the tests, convinced they had to be right and he couldn't
get any of the same results. Very interesting, don't you think? I had put all my
hope in this place, thought this was it, I was going to be better at any
cost...I was devastated. It took me awhile, but I slowly realized that the whole
thing was a scam. No other words for it in my opinion. I think it's really sad
that they take advantage in such a way. The other interesting thing is that the
doctor I saw while I was going there ending up leaving and starting her own
practice. She kept calling me and leaving me messages that she thought she could
help me now that she was free to follow her own protocol and her own beliefs on
what caused fibro. She said she was forced to do things their way while she was
there but now she could do what she thought was best and that apparently was
different from the program they were pushing. She was the one great thing about
the program, I think she really wanted to help and that's why she probably left,
but I ended up moving from the area. Anyway, just thought you might find this
interesting. I know some people probably feel differently about their
experiences, but I was left just feeling sad and let down."
FROM DOM: If you
have been a patient at a Fibromyalgia & Fatigue Center, I would be
interested to hear your experience, positive or negative - briefly. Write
dombush@bellsouth.net. I will
send out a compilation of testimonials soon. Sorry the Dr. Oz show
was such a flop with Dr. Teitelbaum Friday. Many readers reported that Dr.
O. didn't let Dr. T. say but a few words!
12. SWINE FLU CASES
OVERESTIMATED
From a reader--
"Thought it was interesting that the
President declares a state of emergency with only 1,000 swine flu deaths so far
(that means one out of every 305,000 Americans). Regular flu has already
killed 13,000 since January. Or has the flu really killed that
many????? If you click the CDC link and read the CDC website the CDC talks about
how the CDC came up with that number- even though there are not 13,000 so far
this year with flu listed on their death certificate. Lots of hype to get
us to buy the vaccine even when the "danger" has largely passed???? One
wonders, in the time of emergency this ( banks need bailout) and emergency that
(now healthcare needs bailout). Here is the link to the short article
: http://www.theblogofrecord.com/2009/04/28/regular-flu-kills-36000-americans-every-year/"
13. B-12
SHOTS
From a reader--
"I am in my 50's, raising children, and I am in school
full time. I have FMS/CFS and am riddled with shingles all the time from
stress. I wanted to let you know about something I have been taking for about 2
months now and it is really helping my CFS. I have been getting vitamin B12
shots every two weeks and I have to tell you, I feel 80 percent better as far as
the CFS goes. I am also taking Cymbalta for major depression and I do believe it
may be helping with the fibro pain."
FROM DOM: I sure hope
this reader will try oxygen drops and DMSO cream for shingles (also effective
for cold sores). The herpes zoster virus is a vicious one that I have
battled for years and this treatment has been the only thing I have found that
has been effective and not dangerous (such as taking large doses of anti-virals
to suppress the virus). Shingles is horrible! I feel so sorry
for this reader. I had two bouts of shingles this year before being told
by a reader about the oxygen drops and DMSO treatment. Also, cold sores
are an ugly, nasty nuisance that have plagued me for 10 years, but since
starting the oxygen drops and applying the rose-scented DMSO to areas of former
cold sore outbreaks, I have had no outbreaks and have felt great for 10 weeks -
I have had no brain fog or debilitating fatigue! I feel like a normal
person now. I put the oxygen drops in my drinking water (they alkalize the
pH and oxygenate the body) and apply the DMSO cream as soon as I feel the
shingles "tingle" or the cold sore "tingle." Anyone who has herpes zoster
may want to look into this treatment. It has worked for me. I have a
long list of things I tried previously for cold sores at www.fms-help.com/coldsores.htm.
14. SUICIDAL
FEELINGS
From a reader--
"Do you ever struggle with longing for death, perhaps even
feeling a bit suicidal? It is hard to find any sick or handicapped folks
who are willing talk about it."
15. MERCURY TOXICITY,
CFS SYMPTOMS & BIO-IDENTICAL HORMONES
From a reader--
"For around 6 months I went to a medical group
who specializes in CFS/Fibro. The original doctor of the practice
was a founding partner of the Fibro Fatigue Centers, and he is an
endocrinologist. He is held in high regard by Dr. Teitelbaum and
mentioned in his books, etc. These people really understand the
conditions and the impact on patients’ lives. Their lab testing was the
most extensive I’ve ever experienced and was very enlightening. I was
treated with prescription compounded bioidentical hormones for female
hormonal imbalances. In addition, I bought their proprietary protocol
formulas for CFS. The products were extremely expensive, and
some of them caused die off reactions and further fatigue which is common when
the body is casting off yeast and other toxins. This medical group
does not accept insurance, so I payed out-of-pocket for the treatment and the
formulas, though my insurance did reimburse me around 30% of the doctor’s fees
as out-of-network coverage. The formulas were the same as those used by
Fibro Fatigue Centers, though they were much cheaper through my doctor’s
office. I found out later, when I informed them that I could no
longer afford to continue with this medical group, that they would have
suggested that I use less expensive products from Whole Foods,
etc. That rather angered me, but I couldn’t continue to pay the
out-of-network doctor fees anyway. All in all, I was grateful for their
caring, knowledgeable approach and the superior treatment with
bio-identical hormones. The bio-identical hormones
have greatly improved my health and extensively lowered my pain
levels. I’ve since moved to a GYN who can prescribe the same
hormones. I also resumed care with my previous CFS/Fibro specialist
who tweaks the Teitelbaum protocol to include a slant towards testing for heavy
metals toxicity. My longterm specialist has found that at least 80%
or more of his patients have mercury toxicity which vastly changes a patient’s
treatment course and offers deeper explanations for how CFS/Fibro patients take
complex and circuitous routes to chronic illness. More patients
should insist on heavy metals testing with a challenge
test. Just reading about the symptoms of mercury
toxicity would cause red flags to go off in the minds of most CFS/Fibro
patients. In conclusion, I would have to say that each and every
doctor that I’ve seen has helped to uncover another of the many pieces of the
chronic illness mystery that has been my journey now for around 5
years."
FROM DOM: My mouth is paved with
mercury - mostly from my childhood and early 20's. I am 57. I am a
dental chicken due to my childhood dentist not using novacaine for drilling,
only extractions. I do not plan to have my fillings replaced. My
mail runs very low with readers' success in feeling better after mercury
removal. Most have been disappointed. If you have had your mercury
fillings replaced and wish to report in, please write dombush@bellsouth.net."
16. WORKERS REVOLT
AGAINST MANDATORY SWINE FLU VACCINATIONS
17. GUAIFENESIN
PROTOCOL
From a reader--
"I have suffered from very severe Fibromyalgia and Chronic
Fatigue for 16 years. Two years after earnestly seeking God’s
help with this, I got an actual overnight answer to my prayer.
As a matter of fact, on the evening news the next day, I experienced a
truly incredible God incident. After reading the first
chapter of a book called “Knowing God’s Will for Your Life,” I threw the book
down frustrated. I asked God how I was supposed to do anything for Him, when my
days began with me getting out of bed and falling down on the floor every
morning in pain, and then limping through the day at work barely able to move or
think with Fibrofog, and on constant pain medications, The
next day, I got an incredible answer to my prayer. On the evening
news, a woman in my community had started a Fibromyalgia Support
Group, and had actually reversed her symptoms without just covering them
up with pain medications, or Lyrica, or all the other stuff out
there. I was at her next meeting, and I have to admit I was a
bit skeptical at first. She and the group never asked for any
money sold magic pills and just gave all of us a book and CD of
the treatment and even offered to buy the first Guaifenesin pills to get us
started. Guaifenesin is Mucinex by the way and is
sold over the counter.
I learned about
“The Guaifenesin Protocol, By Dr. St. Amand, and received his Book
“What Your Doctor May not tell you about Fibromyalgia. You may
Google any of the above bold typed words/phrases and the Guaifenesin protocol
will come up on the internet. Dr. St Amand is and endocrinologist at the
UCLA Medical Center, has fibromyalgia, as do some of his children and
grandchildren, and he has been treating Fibromyalgia for 40
years.
The
treatment is over the counter. Guaifenesin or (Mucinex) takes approximately
two months to reverse each year you have had major symptoms.
The treatment took me about 7 months to get
well. This is a kidney disorder
caused by the retention of Phosphates and Calcium which accumulates in bones,
muscles and every cell in the body causing the multitude of
problems. The action of the Guaifenisen speeds up or
helps the kidneys with the elimination of the accumulated excessive
phosphate/calcium or (plaque) from where it has incorrectly accumulated in bones
muscles and cells of every tissue in the body. Which is why
this causes such a mix and variety of body-wide problems.
There is
no complete cure for the disease, since we with Fibromyalgia have some
defective chromosomes, which cause our proteins to go awry, but it is entirely
treatable with the Guaifenesin Treatment. (Up to 90%-98% of symptoms are
reversed or disappear.)
I
am 95-98% better and I don’t have to even take any pain medicines any more. I
don’t fall down, nor do I have any cognitive problems (fibro fog), and I have
all my energy back, can climb stairs, run, sleep well etc. and often nowadays I
even forget I have fibromyalgia. Most in our group have been
very well for years. I have been well now for almost four years.
We have one lady who went on the protocol who has been well for 16
years.
The only thing
you have to learn about is that the action of Guaifenesin is blocked in the
kidneys by Salicylic acid (plant acids in the form of oils, gels, extracts that
we put on our skin or are in toothpaste, etc. So with small
changes in lotions, toothpastes, mouthwash, and products we use
causes the Guaifenesin to not be blocked blocked from doing its
work. All I have to do now is take my Guaifenesin dail,y
avoid products with strong Salicylic acids in them, (plant oils, gels, and
extracts, and I feel great .
I now volunteer
with the Colorado Springs Recovery Assistance Foundation, and as I
said many of us here are well, or are in stages of getting better and
better, and we are getting our lives back because of this
treatment. We are a non-profit,
sell nothing, and many or most of us just happen to be Christians as well. Our
website is www.fibrohelp.net and
you can read some of our stories there, and if you Google Dr. St. Amand or go to
www.fibromyalgiatreatment.com, you will
find the treatment protocol and Books and even a CD of the treatment there.
The
difference in this treatment and every other pill or treatment, is that this
actually reverses the condition
or symptoms, and doesn’t just mask it or cover it
up.
I am 95-98%
better and I don’t have to even take any pain medicines any more. I don’t fall
down, nor do I have any cognitive problems (fibro fog), and I have all my energy
back, can climb stairs, run, sleep well etc. and often nowadays I even forget I
have fibromyalgia. Most in our group have been very well for
years. I have been well now for almost four years. We have
one lady who went on the protocol who has been well for 16 years.
This disease has been proven to be genetic, and Dr. St.
Amand’s latest research has proven that is linked to the kidneys by defective
chromosomes- which have to do with proteins which are not doing their
job.
The only thing you have to
learn about is that the action of Guaifenesin is blocked in the kidneys by
Salicylic acid (plant acids in the form of oils, gels, extracts that we put on
our skin or are in toothpaste, etc. So with small changes in
lotions, toothpastes, mouthwash, lotions etc. the Guaifenesin isn’t blocked from
doing its work. All I have to do not is take my Guaifenesin
daily avoid products with strong Salicylic acids in them, and I feel
great."
Your fibro
friend,
Dominie
www.fms-help.com - Dom's FMS/CFIDS Homepage - lots of GREAT articles,
support and research!
dombush@bellsouth.net - I am unable to respond to all of the email I receive, but I
do read what you send.
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