Saturday, March 24, 2012

Serenity Prayer


Lord, grant me the serenity to accept
The things I cannot change,
The courage to change
The things I can,
And the wisdom to hide
The bodies of Doctors I shot
When they said,
"You're perfectly healthy,
It's All In Your Head."
– Author Unknown

IBS, CFS and Pregnancy

Note:  The writer states, "IBS is linked with chronic fatigue syndrome
and fibromyalgia, which causes widespread pain, and researchers said
these conditions should also be studied to see if they caused
miscarriage." There have been studies on pregnancy in fibromyalgia and

A 2011 study of women able to give birth who had fibromyalgia vs
pregnant controls who did not yielded the following stats: Parturients
with FMS had higher rates of intrauterine growth restriction (IUGR;
7.1% vs. 1.0%, p = 0.001), recurrent abortions defined as 3 or more
spontaneous miscarriages (9.8% vs. 1.8%, p < 0.001), gestational
diabetes mellitus (14.3% vs. 7%, p = 0.012), and polyhydramnios (12.5%
vs. 1.6%, p < 0.001). These patients had lower rates of preterm
deliveries (PTD; 6.3% vs. 16.7%, p = 0.018).

Schacterle and Komaroff (2004) found that the rate of first trimester
spontaneous miscarriage was 4 times higher than normal in women with
The authors acknowledge that this higher rate may be caused by
confounding variables and that further investigation is needed to
validate this finding. The authors found no significant difference in
the rate of other pregnancy complications, such as preeclampsia,
gestational diabetes, preterm labor, or low birth weight infants, in
women who became pregnant after the onset of CFS.

Dr. Jonathan Kerr associated Parvovirus B19 with subgroups of CFS.
Parvovirus B19 can cause hydrops fetalis if a non-immune pregnant
woman is exposed, but the CDC states that less than 5% of women who
get parvovirus B19 during pregnancy end up miscarrying. A clinical
history of antibodies to Coxiella burnetii (Q fever) is associated
with miscarriage as is CFS, but that doesn't necessarily equate to
more miscarriages in CFS patients with an intial infection of Q fever.

Bowel condition may increase the risk of miscarriage

PUBLISHED: 19:10 EST, 24 March 2012 | UPDATED: 19:10 EST, 24 March 2012

Pregnant women with a common bowel condition may be 20 per cent more
likely to miscarry, according to new research.

The study is the first to look at the links between irritable bowel
syndrome (IBS) and miscarriage and suggests that pregnant women with
the condition should receive additional antenatal (prenatal) care.

The research examined information from the GP records of 100,000
British women who became pregnant between January 1990 and December
2008. Of those, more than 26,000 had suffered from IBS, a chronic
condition causing pain and bloating.

Pregnant women with a bowel condition may be 20 per cent more likely
to miscarry, according to new research

The researchers found that 6,500 – six per cent – of the women
suffered a miscarriage, which is within the normal range.

But when they looked at the women who also had IBS, the proportion who
lost their babies rose to 7.5 per cent, which is considered

The risk increased further – up to 30 per cent – if the women also had
pre-existing problems with depression and anxiety. IBS is linked with
chronic fatigue syndrome and fibromyalgia, which causes widespread
pain, and researchers said these conditions should also be studied to
see if they caused miscarriage.

The study was by a team from University College Cork in Ireland and
the University of Manchester. One of the authors, Dr Ali Khashan, from
the Department of Obstetrics and Gynaecology at University College
Cork, said: 'We think this will open the eyes of clinicians and GPs to
the possibility women who have IBS should be cared for in a certain
way if pregnant.'

IBS is a common condition of the digestive system causing painful
bouts of stomach cramps, bloating, diarrhoea and constipation. While
there is no cure, the symptoms can be relieved by altering diet and
managed by medication.

However, obstetrician Virginia Beckett, of the Royal College of
Obstetrics and Gynaecology, urged caution over the findings. 'IBS is
often misdiagnosed and there can be other underlying problems which
may contribute to miscarriage,' she said. 'Women should ensure they
take folic acid throughout pregnancy as it reduces the risk of
miscarriage. They should also stop smoking, lose weight and eat

Read more:

Wednesday, March 21, 2012

Beware of Generic Drugs

Quotation of the Day: "Your pharmacists aren't telling you, hey, when we fill this with your generic, you are giving up all of your legal remedies." - Michael Johnson, a lawyer in a case concerning a lack of redress for patients harmed by generic, rather than brand-name, drugs.
Lawsuits aimed at generic drugs are being thrown out across the country in the wake of a 2011 Supreme Court decision favorable to the drugs' makers.

Free Video "All About ME"

Nice 21-minute video of interviews of teenagers with ME from NE
England (from 2008)  i.e.

TalentStar worked with M.E. North East to produce a documentary
highlighting the lives of young people with M.E. The DVD was
introduced by BBC weather presenter Trai Anfield and featured boy band

I got this before (around when it came out) and was wondering what to
do with it. Just did a search and found it's now available for free.

Twitter: @tomkindlon


Emily's Appeal -- please repost!

Emily Collingridge 1981-2012 R.I.P.  i.e.

Emily's appeal

(Permission to re-post)

My name is Emily. I developed the neurological condition Myalgic
Encephalomyelitis (ME) when I was 6 years old. In April 2011 I turned
30. I still have ME.

ME coloured every aspect of my childhood; it painfully restricted my
teens and it completely destroyed my twenties. Now, as I move into the
next decade of my life, I am more crippled than ever by this horrific

My doctors tell me that I have been pushed to the greatest extremes of
suffering that illness can ever push a person. I have come very close
to dying on more than one occasion. If you met me you may well think I
was about to die now - it's like that every single day. After all
these years I still struggle to understand how it's possible to feel
so ill so relentlessly.

My reaction to small exertions and sensory stimulation is extreme.
Voices wafting up from downstairs, a brief doctor's visit, a little
light, all can leave me with surging pain, on the verge of vomiting,
struggling with each breath and feeling I'll go mad with the
suffering. Of course it can also be as bad as this for no particular
reason - and often is. I cannot be washed, cannot raise my head,
cannot have company, cannot be lifted from bed, cannot look out of the
window, cannot be touched, cannot watch television or listen to music
- the list is long. ME has made my body an agonising prison.

My days and nights are filled with restless sleep interspersed with
injections, needle changes (for a syringe driver), nappy changes (as
well as experiencing transient paralysis and at times being blind and
mute, I am doubly incontinent) and medicines/fluid being pumped into
my stomach through a tube. My life could be better if I had a Hickman
line (line which goes into a major vein and sits in the heart) for IV
drugs and fluids, but such a thing would likely kill me. I'm on a huge
cocktail of strong medications which help, yet still most days the
suffering is incomprehensible. During the worst hours I may go without
the extra morphine I need as I feel so ill that the thought of my
mother coming near to administer it is intolerable - this despite pain
levels so high that I hallucinate.

I live in constant fear of a crisis driving me into hospital; our
hospitals have shown such lack of consideration for the special needs
of patients like me that time spent in hospital is torture (eased only
by the incredible kindness shown by some nurses and doctors) and
invariably causes further deterioration.

Many days I feel utter despair.

But, unlike some sufferers, over the long years in which I've had
severe ME (the illness began mildly and has taken a progressive
course) I have at least had periods of respite from the absolute worst
of it. During those periods I was still very ill, but it was possible
to enjoy something of life. So in these dark days I know there is a
real chance of better times ahead and that keeps me going.

My entire future, and the greatly improved health I so long for,
however, currently hinges on luck alone. This is wrong. As I lie here,
wishing and hoping and simply trying to survive, I (and the thousands
like me - severe ME is not rare) should at least have the comfort of
knowing that there are many, many well-funded scientists and doctors
who are pulling out all the stops in the quest to find a treatment
which may restore my health and that the NHS is doing all possible to
care for me as I need to be cared for - but I don't. This wretched,
ugly disease is made all the more so through the scandalous lack of
research into its most severe form and the lack of necessary,
appropriate support for those suffering from it. This is something
that must change.

And that is why I tell my story; why I fight my painfully debilitated
body to type this out on a smartphone one difficult sentence at a time
and to make my appeal to governments, funders, medical experts and

Please put an end to the abandonment of people with severe ME and give
us all real reason to hope."

By Emily Collingridge 2010-2011

You can support Emily and everyone with severe ME by joining the "Severe
ME/CFS: A Guide to Living" Facebook group Both sufferers
and non sufferers welcome! See also

Sunday, March 18, 2012

Are Food Additives Aggravating Your Fibromyalgia?


"Take aspartame, an artificial sweetener found in many diet sodas. "Aspartame acts as an 'excitotoxin' in the brain," says Barbara Mendez, RPh, MS, a pharmacist and nutritional consultant in New York. Excitotoxins are substances that react with certain brain receptors known as neurotransmitters. "When these neurotransmitters are overstimulated, they compromise the neurotransmitter receptor sites, amplifying the sensation of pain."