Saturday, June 12, 2010

You Must Be Well Now

Dear Friends:
A person who I have been communicating with suggested I forward my
reply to her to others in the support network.  As all people are
treated confidentially, I will not name the individual but I thought
I would do what she suggests and pass on my response to her, in the
hope it will help someone going through something similar.
Lydia
Lydia E. Neilson, M.S.M., Founder
Chief Executive Officer
National ME/FM Action Network
512 - 33 Banner Road
Nepean, ON K2H 8V7 Canada
Tel. (613) 829-6667     Fax (613) 829-8518
E-mail: ag922@ncf.ca
Web: http://www.mefmaction.net

Dear Friend:

First of all, I want you to understand that your reaction to exercise
is normal for people who have ME/CFS.  Until you are in the recovery
mode, exercising will set you back.  Even in recovery mode, you must
be very careful.
  If you want to do any kind of exercise, keep it to
careful stretches so that your body stays limber and just do plain
walking.  If it means only walking in your house, then do just
that.  I am sending you what happens to people who have ME/CFS and
they exercise before they are ready to do so:

RESPONSE TO EXERCISE



  Healthy People:

A sense of wellbeing
It invigorates them and acts as an anti-depressant effect
Resting heart rate is normal
Heart rate is at maximum workload and elevated
They get a maximum oxygen uptake and elevated
Age-predicted target heart rate can be achieved
Heart functioning is increased
Cerebral blood flow increased
Cerebral oxygen increased
Body temperature increased
Respiration increased
Cognitive processing is normal or more alert
Recovery period is short
Oxygen delivery to the muscles is increased
Gait kinematics is normal

ME/CFS People
Feeling of malaise, fatigue and worsening of symptoms
Resting heart rate is elevated
Reduced heart rate
Oxygen uptake approximately half of sedentary controls
Age-predicted target heart rate cannot be achieved
Heart functioning is sub-optimal level
Cerebral blood flow is decreased
Cerebral oxygen is decreased
Body temperature is decreased
Respiration, breathing irregularies occur i.e. shortness of breath
and irregular breathing
Cognitive processing is impaired
Recovery period at least 24 hours but can last days or even weeks
Oxygen delivery to the heart is impaired
Gait abnormalities

I hope that helps you to realize that what is happening to you is for
a reason and why you feel worse after exercise.

Your mom's reaction to your illness is lack of understanding what a
chronic illness is.  She is not any different from most people who
have not been exposed to chronic illness before.  It is hard to
believe how anyone can be ill for so long without getting better.  I
doubt very much that at one time you would think your illness could
go on for so long.

When an illness is considered chronic, it means that it goes on for a
long time and can wax and wane.  Some days are better than
others.  That is with all chronic illness and ME/CFS is no
exception.  You have to get over the fact that you must have done
something wrong because you are not doing the right things and if you
did you would be better by now.  To get better you need treatment
that is geared towards the illness.  In our case, the treatment
treats some of the symptoms.  The only part you can influence is the
stress and pace as much as you can.  It is important that you do not
go to the point of exhaustion and always stop much before you get
there.
  That accomplishes two things.  One, if you stop before you
reach the breaking point, you make the decision to stop instead of
the illness stopping you.  In addition, your recovery rate is better
if you rest before you exhaust yourself.

How other people react to your illness is something you cannot
control, just like you can't control what people think of you.
  You
may have changed because of illness as to what you can do but you are
not the illness and are still you.  You need not be ashamed because
others feel you have been ill long enough and it is time to shape
up.  It is hard for anyone to believe that in this day and age there
is not something that a doctor can give you that will make you
recover.  We think that once we are diagnosed, everything will be
fine and it is just a matter of time before we are as good as
new.  That is not reality.

From this day forward, hold your head up high and be yourself.  Stop
indirectly apologizing that you are not the way people think you
should be.  You are equal to everyone else and those who do not treat
you with respect and caring, and make you feel bad about yourself,
keep your distance form them.  Go on with your life as best you can
and know that the National ME/FM Action Network will keep working for you.



Lydia E. Neilson, M.S.M., Founder
Chief Executive Officer
National ME/FM Action Network
512 - 33 Banner Road
Nepean, ON K2H 8V7 Canada
Tel. (613) 829-6667     Fax (613) 829-8518
E-mail: ag922@ncf.ca
Web: http://www.mefmaction.net 

 

Friday, June 11, 2010

FDA panel urges OK of first oral MS drug – Paging Dr. Gupta - CNN

 

Since MS and CFS have quite a bit in common -- enough that CFS is sometimes misdiagnosed as MS -- this may provide some benefit to some of our patients.
 
 

Wednesday, June 9, 2010

Subset-directed antiviral treatment of 142 herpesvirus patients with CFS

 


Results and conclusions:

• The Group A herpesvirus CFS patients (no coinfections) returned to a near-normal to normal life (P = 0.0001). [Probability of result occuring by chance 1 in 10,000.]
-  The long-term EIPS value increased (primary endpoint, P < 0.0001) with subset-directed long-term valacyclovir and/or valganciclovir therapy.
-  Secondary endpoints (cardiac, immunologic, and neurocognitive abnormalities) improved or disappeared.

• Group B CFS patients (herpesvirus plus coinfections) continued to have CFS.

Source: Virus Adaptation and Treatment, May 2010;2010(2). Lerner AM, Begaj S, Fitzgerald JT, Gill K, Gill C, Edington J. Department of Medicine, William Beaumont Hospital, Royal Oak; Wayne State University School of Medicine, Detroit; Department of Medical Education, University of Michigan Medical School, Ann Arbor; Dr A Martin Lerner Chronic Fatigue Syndrome Foundation, Beverly Hills, Michigan, USA. [Email: amartinlerner@yahoo.com]

[To read ME/CFS science reporter Cort Johnson's very informative article on this research and his interview with Dr. Lerner, click here.]

Abundant Evidence ME/CFS is Neurological - Harvard's Dr. Komaroff

 
Excellent Videos Available Free Online (Full Text Scripts Promised Soon)
Now, with Dr. Komaroff's permission, the Mass. CFIDS Assoc. has made Dr. Komaroff's lecture and extensive audience Q&A available on their website (www.masscfids.org/news-a-events. The videos take time to download, but the visual and sound quality are first-rate.

Tuesday, June 8, 2010

CFS Facts now on Facebook

 

Bad medical writing hurts public health - CNN.com

 
"the media reward reporters whose stories can lead to the most eye-grabbing headline. These reporters are well-meaning, but if they do not understand medicine and the scientific process, these articles can truly harm public health. And, in my experience, that is happening more and more often."

"At last I've been convinced ME is real"

Well done to Invest in ME!

------------------------------------------

ASK THE DOCTOR:
By Dr Martin Scurr

Last updated at 11:00 PM on 7th June 2010

Dr Martin Scurr has been treating patients for more than 30 years and
is one of the country's leading GPs.

http://www.dailymail.co.uk/health/article-1284795/You-CAN-beat-misery-piles.html?ito=feeds-newsxml


I admit it, I was wrong. For many years, I - like many of my medical
colleagues - have blamed ME on psychological or behavioural causes.

Then, last month, I attended the 5th World Conference on ME/CFS
(myalgic encephalomyelitis/chronic fatigue syndrome).

There I spoke to a number of experts who were emphatic that the
evidence shows the condition really does have a viral origin.

This has never previously been clear - before, there had been only
hazy circumstantial evidence.
There have been two problems really;
first, identifying the cases - who does and who does not have ME/CFS?

The second, how to tell if any identified bacteria or virus is
actually the cause of a disease, or merely there by chance (and not
actually involved in the disease process).

When it comes to diagnosing ME, it's always been difficult
distinguishing it from another common but hard-to-prove condition,
depressive illness. Both involve the major symptom of fatigue - a
gross tiredness unlike any other, such is its overwhelming severity.

Both are associated with sleep disturbance, impairment of memory and
concentration, emotional symptoms - indeed, there are many in the
medical profession who have long considered that those who believe
they have ME/CFS have a form of depression and are in denial.

But there is one challenging difference: those with ME/CFS have a
flare of their malaise lasting at least 24 hours after physical
exertion, whereas people with depression - if they can manage exercise
- tend to be briefly a bit better.

At the conference, a number of plausible ideas were advanced for the
condition, including one from Professor Brigitte Huber, an
immunologist from Boston. She explained that 8 per cent of all the
DNANA in our bodies is basically a form of infection
- it's become
incorporated into the genetic code of our cells.

This infection 'gene' gets switched on whenever you catch a common
viral illness - such as glandular fever or herpes simplex (the type
that gives you cold sores). This triggers the immune system to pour
out vast quantities of chemicals which cause widespread effects such
as muscle pain and exhaustion.

In most patients, this reaction stops after a week or two as they
recover - the immune system puts the infection gene back to bed.

But in a small number of people this doesn't happen, so the immune
cells continue to be activated, causing grief, and the illness becomes
ME/CFS.

Knowing why this happens still needs to be explored. But it is an
exciting time and some solace to those who have this awful illness and
have never been believed.
 
 
 

Monday, June 7, 2010

C-Reactive Protein: The Test

 

My C-Reactive Protein tested at about 10x the normal level, which was enough to get me thrown out of the clinical trial for being "too sick".  The disability judge simply refuses to acknowledge that there are any abnormal test results; the existence of this test has never been commented on in any of his decisions.  And in a six-inch pile of paper, it's very easy to see how the Court of Appeal might miss a single sheet of paper which is the "smoking gun" of my entire case.
 
 
 
 
 
 
 

Magnesium and ME

*please repost* *permission to repost* *please repost*

A new paper is available: Oral, IV, injected and transdermal magnesium and
M.E. by Jodi Bassett of HFME

This paper explains: What are the many benefits of magnesium? What are the
symptoms of magnesium deficiency? What is the appropriate dose of magnesium
for M.E. and how do you know if you are deficient? How safe is magnesium?
What are the extra benefits of transdermal magnesium?

Information on magnesium is particularly important for anyone taking calcium
supplements that is NOT taking at least as much magnesium as calcium.

---------

Oral, IV, injected and transdermal magnesium and M.E.
Copyright © Jodi Bassett June 2010.
Taken from http://www.hfme.org/researchmgandme.htm

An excerpt:

The amount of research on the topic of magnesium is 'staggering' according
to magnesium expert Dr Carolyn Dean. Magnesium (Mg) is the fourth most
abundant mineral found in the body. Magnesium makes up approximately 0.05%
of the body weight, around 50 - 60 % of which is found stored in the bones
and teeth. Most of the remaining 40 - 50% is found in muscles and soft
tissues with the brain and the heart having a high concentration.

Metabolic cardiologist Stephen T. Sinatra MD considers L carnitine, CoQ10, D
ribose and magnesium the 'awesome foursome of cardiovascular health' and
writes, 'More than seventy-five years ago, medical scientists declared
magnesium to be an essential nutrient, indispensable to life.'

Jay S. Cohen MD, author of The magnesium solution for high blood pressure ,
makes the statement that, 'Most doctors are wary of supplements that come
with all sorts of promises and miracle stories. They should be and so should
you. Fortunately, magnesium comes with scientific evidence that dwarfs the
evidence presented for many top-selling prescription drugs.'

. Magnesium is an essential mineral involved in over 300 enzyme actions in
the body
. Magnesium is essential for proper mitochondrial function, and can improve
mitochondrial function. Mg is critical for cell metabolism, growth of cells,
cell division, cellular homeostasis and the production of ATP. Mg produces
and transports energy. Mg helps to transport other minerals across cell
membranes and affects cell mechanisms controlling muscle and nerve cell
activity. Mg is important for the metabolism of many essential nutrients and
substances, including calcium, potassium, phosphorus, zinc, copper, sodium,
hydrochloric acid and acetylcholine.
. Magnesium calms the brain and CNS as well as the muscles and the heart. Mg
can be helpful in reducing neurological overstimulation and raising the
threshold for seizures. Optimum Mg levels are associated with deeper sleep
and more refreshing sleep. Mg is necessary for the production of melatonin.
. Magnesium improves cardiac function and is essential for normal heart
function. It is the heart's most important mineral. Mg is effective at
preventing or reducing spasms within blood vessels in the heart, and keeping
the heart rhythm steady.
. Magnesium reduces homocysteine levels, and regulates the synthesis of
cholesterol (by inhibiting the enzyme required for cholesterol synthesis).
Mg can raise HDL cholesterol and lower LDL cholesterol.
. Magnesium improves muscle function, and treats and prevents muscle cramps
and gastrointestinal and oesophageal spasms.
. Low magnesium levels often contribute to or cause chronic pain. Mg both
works to block pain reception and also can act on the sources of pain. It
can therefore treat the causes of pain, rather than purely offering
symptomatic relief. Causes of pain treated with Mg may relate to
inflammation, toxicity, cell wall rigidity, mineral deficiencies or
imbalances, and so on. Mg is also highly effective for relieving pain
because it is a non-competitive antagonist of the N-Methyl-D-Aspartate
(NMDA) receptor site.
. Magnesium is essential for detoxification and protects cells from
aluminium, mercury and lead etc. It may protect the brain from the toxic
effects of certain chemicals. Two of the principal conditions that allow
glutamate to shift form a neurotransmitter to a dangerous neurotoxin are low
ATP levels (with any cause) and low Mg levels. Mg can improve symptoms of
chemical sensitivity.
. Magnesium acts as a cell tonic and reduces inflammation in blood vessels
(as measured by reduced levels of C-reactive protein).
. Magnesium is essential for proper nerve impulse transmission.
. Magnesium is essential for calcium management and reducing calcium
deposits in arteries (a risk factor for artery blockages and thromboses).
Normal levels of magnesium prevent calcification of organs and tissues.
Without adequate magnesium, calcium will not function as it should. If
magnesium levels in the body are low, calcium is taken out of the bones and
teeth and into the tissues.
. Magnesium helps the body metabolise sugar and is essential for the
synthesis and absorption of protein foods. Without Mg insulin is not able to
transfer glucose into cells, meaning that glucose and insulin build up in
the blood causing various types of tissue damage. Mg keeps insulin under
control, without Mg episodes of low blood sugar can occur.
. Magnesium improves asthma and allergies. Histamine production and
bronchial spasms increase with Mg deficiency.
. Magnesium improves immune function (white blood cells require adequate
magnesium to function).
. Magnesium can improve PMS symptoms and is essential during pregnancy.
. Magnesium activates vitamins B1, C and E.
. Magnesium helps to maintain the structural integrity of DNA.
. Magnesium taken in transdermally indirectly boosts DHEA levels (and avoids
the side effects of synthetic DHEA supplementation). DHEA is the most
prevalent and essential hormone in the human body.
. Magnesium deficiency contributes to stroke and heart attack, and magnesium
can aid in recovery after a stroke. Mg has an important role to play in
preventing blood clots and keeping the blood thin (much like aspirin but
without the side effects).
. Magnesium deficiency often contributes to or causes headaches and
migraines. (Mg can trigger dozens of health conditions if it is deficient.)
. Magnesium improves skin and gum health, and strengthens hair and nails as
well as bones and teeth. Mg deficiency causes an unhealthy balance of
phosphorus and calcium in saliva, which damages teeth.
. Magnesium is found in unprocessed whole grains, greens, nuts and seeds
(and chocolate).


What are the symptoms of magnesium deficiency?
Symptoms of magnesium deficiency include muscle cramps, restless legs
syndrome, heart palpitations, morning stiffness, cramps, chest tightness or
inability to take a deep breath, chocolate cravings and headaches or
migraines. Raising magnesium levels to optimum may also help stop
oesophageal spasms and tremors or shakiness, reduce pain levels, treat
vertigo, make sleep deeper and more restful/refreshing, as well as reduce
sensitivity to sudden loud noises and bright lights and neurological
overstimulation generally.

With more severe magnesium deficiency numbness, tingling, seizures,
personality changes, frequent urination, extreme hunger and thirst, blurry
vision that changes from day to day, abnormal heart rhythms, and coronary
spasms can occur.

Magnesium deficiency can cause a number of symptoms which can mimic anxiety
or behavioural disorders or depression. These include symptoms such as
anxiety, panic attacks, anger, nervousness, disorientation, hyperactivity
and restlessness with constant movement, loss of appetite, nausea, lethargy,
depression, and insomnia. (Magnesium deficiency is one cause of these
symptoms but is of course not the only possible cause.)
For more information on the symptoms of magnesium deficiency see the
Magnesium for life website or the website of magnesium expert Dr Carolyn
Dean.


How common is magnesium deficiency?
Magnesium deficiency is very common. In 2006, the World Health Organization
reached consensus that a majority of the world's population is magnesium
deficient. The US Daily Value for magnesium is approximately 320 mg per day
for women and more than 400 mg per day for men. These magnesium dosages are
considered far too low by holistic medicine experts and experts in the field
of magnesium, yet many people (72% of participants in one 1995 study) do not
even reach these low targets.

Research shows that most people only take in only about half these listed
amounts, or less. The reasons for such low magnesium intake are the mineral
depletion of our soils, the popularity of processed foods (magnesium is lost
when food is refined) and the increase of calcium intake, via dairy products
or supplements, without a corresponding increase in magnesium (as high
calcium intake impedes proper absorption of magnesium). It is also a problem
that fluoride in our water supply binds to magnesium particles and renders
them unavailable for use in our body, and that where there are digestive
problems magnesium may not be well absorbed even when the diet is high in
magnesium. The use of diuretic drugs also severely depletes magnesium.

Thus while eating a whole food diet containing the foods high in magnesium
such as whole grains, greens, nuts and seeds is important, magnesium
supplements are also necessary.


What are the different ways that supplemental magnesium can be taken?
Magnesium can be taken orally in the form of tablets, capsules, powders or
liquids, administered via injection or IV, or absorbed transdermally
(through the skin).

Oral magnesium supplements are poorly absorbed even by those with no
digestive problems (10 - 50%), so absorption can be a real problem in a
disease like M.E. where there are significant gut issues and problems.
Because absorption is so low, oral doses of magnesium need to be high but
this can lead to gastrointestinal problems. The laxative effect is a
limiting factor with oral magnesium, that is not present or is very much
reduced with transdermal, IV or injected magnesium. Thus magnesium may not
be able to raised to optimum levels with oral magnesium alone.

Magnesium injections or IVs are probably the best and fastest way to take in
magnesium (as Cheney explained in his 2007 lecture). But this option is not
always practical or accessible for all patients, particularly as magnesium
may need to be injected several times per day, long-term.

Transdermal magnesium is better absorbed than magnesium taken orally, and
can be almost as effective as magnesium injections. Its use is far less
involved and perhaps safer than injections or IVs, when transdermal
magnesium is used at high doses. Transdermal magnesium experts have observed
that this method of taking on magnesium seems to have the advantage of
letting the body absorb magnesium where it is needed and only as much as is
needed. In contrast, the amount taken orally and via injection involves a
lot more guesswork and potential for side effects from too high a dose.
However, these experts have also made it clear that their observation and
opinion that only as much transdermal magnesium as is needed is absorbed has
not yet been proven in studies, and that more research is needed in this
area.

There are also other benefits to using magnesium oil over other forms of
magnesium. Transdermal magnesium, magnesium taken in through the skin, can
indirectly raise DHEA levels, making this form of magnesium a useful
treatment for menopausal symptoms and PMS symptoms. Enhanced natural
production of DHEA can also help promote adequate sleep (in accordance with
circadian rhythms). DHEA is the master hormone from which many other
hormones are made (eg. estrogen). Raising DHEA levels naturally avoids the
problems caused by supplementing these other hormones directly. (Estrogen
hormone replacement raises risk of blood clots, for example and while
synthetic DHEA is a commonly-used nutritional supplement, evidence points to
the greater safety and effectivenes of naturally-produced/endogenous DHEA,
including lower risks from adverse effects, according to magnesium expert
Mark Sircus Ac OMD.)

IV and transdermal magnesium bypasses the liver (reducing the load on the
liver). Mark Sircus Ac OMD, says,
Transdermal (skin) application of magnesium is actually superior to oral
supplements in many ways and is the best practical way magnesium can be used
as a medicine besides by direct injection. Transdermal magnesium delivers
high levels of magnesium directly through the skin to the cellular level,
bypassing common intestinal and kidney problems associated with oral use.

Magnesium deficiency can inhibit oral magnesium absorption, and so IV or
transdermal magnesium may be necessary for a time if magnesium deficiency is
severe, to help the person overcome this problem. IV and transdermal
magnesium also do not have the same limits on the rate and amount of uptake
and assimilation as oral magnesium.

According to magnesium expert Mark Sircus Ac OMD, magnesium deficiency can
be corrected via oral magnesium supplements in 6 - 12 months, via
transdermal magnesium in 4 weeks, and in 2 weeks via IVs or injections.

Excerpt ends.

To read on (or see a fully formatted version of the abive text) see:
http://www.hfme.org/researchmgandme.htm

------

Partial referenece list:

Reference and recommended additional reading list
. Transdermal magnesium therapy : A New Modality for the Maintenance of
Health by Mark Sircus.
. The miracle of magnesium by Dr Carolyn Dean.
. The Sinatra Solution by Stephen T. Sinatra MD
. The Magnesium Factor by Dr. Mildred Seelig MD. NPH, MACN. A renowned
researcher of magnesium, Dr. Seelig advocated the use of transdermal
magnesium to boost magnesium levels.
. Stand Back and Watch the Miracle Working Power of Magnesium by Dr Carolyn
Dean
. The Vita-Nutrient Solution by Dr Atkins

---------

If you would like to link to this page, please do so using the link above
only. If you'd like to download a Word or PDF version of this text, please
click on the above link or use the links below:

http://www.hfme.org/Word/Treating_ME_The_Basics.doc
http://www.hfme.org/PDF/Treating_ME_The_Basics.pdf
http://www.hfme.org/LT/LT_Treating_ME_The_Basics.pdf

Please read the cautions in the full length paper before starting any new
treatment, including magnesium.


Best wishes everyone,
Jodi Bassett
--
The Hummingbirds' Foundation
for Myalgic Encephalomyelitis:
www.hfme.org
--
I talk all day and every day about magnesium but many people are focused on
calcium. Women especially are led to believe that calcium, and lots of it,
is necessary to keep their bones from crumbling away. Medically we just
imagine that bones are made of calcium and don't realize the interplay
between the two. However, if you've read anything I've written about
magnesium, you'll know that magnesium is the dynamo behind calcium. They are
both necessary and equally important for strong bones and many other
processes in the body.
     Calcium (in the carbonate, citrate and gluconate forms) is only 4-10%
absorbed. Unlike magnesium, calcium doesn't flush itself out with diarrhea
if you take too much. Calcium, instead, causes constipation and builds up in
the body. Some researchers are saying calcium supplements are responsible
for an increase in calcification causing heart disease, kidney stones, gall
stones, heel spurs and fibromyalgia. Part of that buildup has to do with the
fact that few people take magnesium with their calcium. It also has to do
with the type of calcium taken. Dr Carolyn Dean.

Transdermal (skin) application of magnesium is actually superior to oral
supplements in many ways and is the best practical way magnesium can be used
as a medicine besides by direct injection. Transdermal magnesium delivers
high levels of magnesium directly through the skin to the cellular level,
bypassing common intestinal and kidney problems associated with oral use.
Mark Sircus Ac OMD



------------------------------------

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Sunday, June 6, 2010

The Spoon Theory

 

The author has lupus, but her theory can help all of us explain to our healthy friends/family why we can't do everything they think we should.