Friday, April 2, 2010

A good use for those mateless socks we all have

 

Dear Doctors, Researchers, Authors and Advocates:

We planned to let you be the first to know, before making this fully public. However, while we were lining up volunteers to get everything in place and ready to announce, the cat slipped out of the bag. Fortunately it met with great enthusiasm. The idea seems to be charming people's socks off. So while we're not quite ready to put out a press release, we do want to give you the following Heads Up.

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PRE-RELEASE

Coming 12 May 2010 for ME/CFS Awareness Day and Beyond:

Sock It To ME/cfs
An activist art project.

Background:

Osler's Web author Hillary Johnson has said that we need something for ME/CFS, like the AIDS quilt: something engaging and colorful and big to get positive attention.

What we want to use is socks.       

Why Socks?

An engaging speaker on CFS, Dr. David Bell has this saying when there's some really great research making him happy. He says, "It makes my socks go up and down."

"Lily" wrote,

"Well I don't know about the rest of you, but since I've been practically bedbound  for the past three years, I've developed quite an intimate relationship with my socks. I mean shoes are sort of a thing of the past and my socks have become ever so important.

They have to be just right - soft, not too tight, not too loose, not too hot, but warm enough - just right. For me the socks theme really has a lot to do with this illness.  Socks and jammies. Since I've been homebound, I have found it completely unnecessary to wear matching socks - even boring to do so. My relationship with my socks has become something quite special these last few years... so while I love Dr Bell and his socks that go up and down, I think the socks are very representative of CFS."

Instead of the quilt blocks of the AIDS quilt, personalized socks will express the idea of comfort and coziness, caring for ME/CFS patients.  They can be as easy or as elaborate as their makers wish, decorated with felt pens, fabric paints, patchwork, photos, appliqué, quilting, beadazzling, embroidery and even, of course, knitting.

How socks will be contributed:

Anyone can send in a sock in honor of a person with ME/CFS. Accompanying information can include name or nickname, the year the person became ill, if a child their age at onset, if deceased the date of death.  Identifying information on socks, and photos of socks, will be kept in a searchable database so people can look up their loved ones' socks on our website.

Those who can't make a sock for themselves can contact us: volunteers will make sock "blanks" that we can send people to decorate themselves or, if too ill to decorate, one of our volunteers can decorate a sock on their behalf.

For display:                             

Individual socks will be firmly attached on long sections of sturdy webbing to form garlands. Garlands can be hung up at conferences or in public places the same way the AIDS quilt has been displayed laid out at the Washington DC mall and in 12 x 12 blocks at various venues worldwide. The sock garlands can also be carried by marchers in parades, strung between poles. "Wind socks" offer another option to parade with and create small displays.

Fundraising Potential

Donations will help cover costs from postal fees and display permits to web hosting and sock materials. Any additional funds raised over costs will be donated to research and patient services projects. "Sock hops" can be held, where healthy people dance to raise funds. We will be "socking away the funds" for ME/CFS. People will soon be able to show their support by purchasing t-shirts, mugs, buttons, mini-sock lapel pins, key chains and of course socks.

Grass Roots and Cooperative

This doesn't have to be an enormous project. The idea was created by people who are chronically ill and have little energy. It can start small and it can even stay small. It gives people with ME/CFS something proactive we can participate in. Those who can't decorate even a ready-made sock can submit their names, and others with lots of sock-making energy can make socks on their behalf. The image of the garland of bright, colorful, varied socks fills us with happiness and we hope will engage others, too.

Growth Potential

Given the number of people with ME/CFS in the world, and the possibility of healthy volunteers joining in, this could grow huge. If it does, that's fine, too. We can have multiple garlands traveling the world, the same way the AIDS quilt has multiple quilted blocks traveling the world. Healthy friends and family, and we occasionally-energetic people with ME/CFS, can contribute time and effort to keep it going. Regional chapters might eventually start up to help local sufferers make and send in their socks, to arrange for local displays, and to host local fundraisers, sock hops, parade contingencies and such. We'll link any regional chapters from our website and list their display events on our calendar.

Volunteers

There is plenty of room for helpers with any sorts of skills to hop aboard. If you, or anyone you know, is interested in assisting with the project, please put VOLUNTEER in the subject line of an email to SockIt2MEcfs@gmail.com and our volunteer coordinator will be in touch.

Further Information

Please contact project originators. Siobhan McElwee at talkingfox@talkingfox.com and Kassy Fatooh at creekfeet@gmail.com will be delighted to receive your questions and input. Our website is under construction but will be up and running soon: http://sockit2mecfs.org/ will welcome your visits.

Siobhan McElwee
talkingfox@talkingfox.com
Kassy Fatooh
creekfeet@gmail.com

 

Thursday, April 1, 2010

Komaroff lecture April 24

The Massachusetts CFIDS/ME & FM Association is pleased to announce
the first of a new series of free educational forums.

ANTHONY KOMAROFF, M.D., Professor of Medicine at Harvard Medical School and
Editor-in Chief of Harvard Health Publications, will speak on
"The Latest Research on Chronic Fatigue Syndrome"
Dr. Komaroff will discuss the latest research on viruses, the immune
system, the brain and energy metabolism in CFS

This talk will occur at 2 PM on April 24 at the Nangeroni Education
Center of the Milton Hospital, Milton, MA, USA
(199 Reedsdale Rd.). For directions please visit:
www.miltonhospital.org/directions.htm

This lecture and discussion will be preceded at 1 PM by events
honoring our 25th anniversary as well as one of our founders,
Bonnie Gorman, and several senior volunteers

If you can attend please pre-register at: www.masscfids.org
 
 

CFSAC Meeting May 10

The federal CFS Advisory Committee will meet on May 10 in Washington, D.C. The meeting is open to the public and will be webcast live. For more meeting information, see CAA's Note on Facebook or the Federal Register noticed published today at http://frwebgate5.access.gpo.gov/cgi-bin/TEXTgate.cgi?WAISdocID=126960495800+0+1+0&WAISaction=retrieve
 
 

Wednesday, March 31, 2010

Whatever Happened To Psychiatrist Charles Nemeroff Probe? (One Click)

Whatever Happened To Psychiatrist Charles Nemeroff Probe?

Psychiatrist Charles Nemeroff

For those tracking the ongoing investigation by the Senate Finance Committee investigation into conflicts of interest among academic researchers and industry funding, Charles Nemeroff was one of the targets. The former Emory University professor, who now works at the University of Miami, came to the committee's attention because he was accepting sizeable consulting fees from GlaxoSmithKline at the same time he was the primary investigator on an NIH-funded grant for research into a Glaxo drug. A recent letter from the HHS OIG indicates that the probe is still under way and an update is expected some time in June. The interest taken by the HHS OIG underscores the issue raised by Senator Charles Grassley, which is whether universities are fulfilling their requirements to adequately monitor disclosures in an effort to maintain scientific integrity and objectivity.
Ed Silverman, Pharmalot
 

* * *
 
Several of the "experts" on "CFS" have dubious connections.  For example, some Disability insurance policies are written so that benefits are paid for life for physical ailments, but only 2 years for mental health issues.  Some "CFS" "experts" who attribute it to purely psychiatric causes are on retainer with those insurance companies, thus having a vested interest in determining there to be no physical abnormalities whatsoever, because any physical abnormality would increase the amount of money the insurance company would have to pay out.
 



 

Tuesday, March 30, 2010

Severe ME/CFS: A Guide to Living

[I haven't read this book but see that they have a comment from Simon
Lawrence (25% ME Group) amongst others. I'm appending the press release and
information from one of the pages which then links to a lot more
information, which I haven't posted.  The information is more
visual/"attractive" on the site. Tom]

http://www.ayme.org.uk/files/news-main.pdf

News Release
Help at Last for the Tens of Thousands Suffering from Severe ME

Embargo until 29/03/10

From next month, extensive practical help will at
last be available for the many thousands of people
battling ME in its most life destroying form, thanks
to a determined woman who is herself extremely
ill. Emily Collingridge, 28, has written the first
reference book on severe ME to exist in the UK.
"Severe ME/CFS: A Guide to Living" will be
launched on the 29th March 2010 and has
already received extensive praise in previews.

Healthcare professionals are hailing the book as an
important development in the management of severe ME/CFS whilst patients and
carers are
saying it is exactly what they have been waiting for and will be positively
life changing.

There are thought to be between 60,000 and 120,000 people with severe ME
(note: ME is also
known as Chronic Fatigue Syndrome or CFS) in the UK. That means that at
least 1 in 1000 of
the UK population are either house or bedbound and dependent on others for
care as a result
of ME/CFS. Patients suffer a wide range of symptoms, including crippling
pain, intense flu like
malaise, hypersensitivity to sound, light and touch, cognitive dysfunction,
transient paralysis,
abnormal exhaustion, extreme nausea, weakness and more. They can be left
unable to sit up,
to watch television, to eat, to speak and even to recognise loved ones. Yet,
despite the degree
of devastation caused to so many, to date there has been little easily
accessible information
available to patients, carers and even medical professionals on how to cope.

Emily Collingridge, from London, learnt the hard way. She became ill 22
years ago, at the age
of 6, and has now had severe ME/CFS for 12 years. At her worst she was
blind, mute, doubly
incontinent, tube fed and unable to move at all. Rare complications brought
her close to
death. Desperate to make severe ME/CFS a less traumatic experience for
others, Emily has
spent the last two years researching and writing "Severe ME/CFS: A Guide to
Living".

It is the first book to bring together comprehensive knowledge and advice on
all aspects of life
with severe ME/CFS from a large number of patients, carers, loved ones and
professionals with
the aim of helping patients, carers, loved ones and professionals. It is
backed by a number of
top experts in the field of ME, including the highly respected and
experienced specialists Prof
Tony Pinching and Dr Alastair Miller.

The book is being published by the charity the Association of Young People
with ME (though is
written for and about adults of all ages as well as children and young
people). It is being sold
at cost as both Emily and the charity are anxious for it to reach as many
people as possible.

Mary-Jane Willows, CEO of the Association of Young People (known as AYME),
says, "No-one
could fail to be impressed by what Emily has achieved with this book. Her
own ME has, at
times, been shocking in its extremity and she continues to suffer daily. How
someone who still
needs 24 hour care and high doses of morphine can produce a book of such
quality and value
is quite astonishing".

Media Contacts
If you would like a press pack (containing facts about severe ME/CFS, a
synopsis of
the book, the author's story in her own words, three patient case studies,
comments
on the book from patients, carers and professionals and images for
reproduction), if
you would like to interview Emily Collingridge/ another patient/ a carer/ a
professional or if you have any questions, please contact Jane at
media@severeme.info or on <deleted>



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

http://www.ayme.org.uk/article.php?sid=21

Severe ME/CFS: A Guide to Living

AYME is very proud to be publishing a major new resource for patients (of
all ages) who are facing severe ME as well as the loved ones and
professionals providing their support and care. Severe ME/CFS: A Guide to
Living by former AYMEr Emily Collingridge is the first definitive reference
book written specifically to help those who are predominantly bedridden and
in need of considerable care.

"A book no severe ME sufferer should be without" Frances Goodchild, patient

"An absolute 'must-read'... It could literally change your life" Chris B,
carer

"An invaluable source of information and guidance for all health
professionals... The practical, understanding advice is exceptional" Gill
Walsh, specialist nurse

"This book has the potential to be very important" Prof Ingvar Bjarnason,
consultant physician

Emily has over twelve years personal experience of severe ME and has worked
in consultation with over thirty patients, carers, friends, relatives and
health professionals to produce a book which addresses almost every
conceivable area of life with severe ME and offers specific help for carers,
partners, siblings, parents, grandparents, friends, doctors, nurses,
occupational therapists, physiotherapists, dietitians, speech language
therapists, psychologists, social workers and home tutors.

Severe ME/CFS: A Guide to Living, which is A4 in size and contains over 130
jam packed pages, is being sold at cost for the bargain price of £5.99
including p&p
http://www.ayme.org.uk/%22http://www.ayme.org.uk/article.php?sid=21&id=295\"
  to enable multiple copy purchase. And AYME SAMs can get their first copy
half price!

In this special section of the AYME website you can learn more about the
book as well as how to order it, read about Emily, see what people are
saying about the book and find out how to help promote it to those who could
benefit. Readers of Severe ME/CFS: A Guide to Living can also download the
supplement on completing a DLA claim form (referred to in Chapter Nine of
the book).

You may also like to visit severeme.info  http://www.severeme.info/ – the
full website for Severe ME/CFS: A Guide to Living.


Buy the book!
http://www.ayme.org.uk/article.php?sid=21&id=295
It's just £5.99 including p&p, order online or download an order form.


About the book
http://www.ayme.org.uk/article.php?sid=21&id=296
Read a synopsis and view the detailed contents pages.


Readers Write
http://www.ayme.org.uk/article.php?sid=21&id=297
See what has been said about the book.


About Emily
http://www.ayme.org.uk/article.php?sid=21&id=297
Learn more about Emily.


Advertising fliers
http://www.ayme.org.uk/article.php?sid=21&id=299
Help to spread news of "Severe ME/CFS: A Guide to Living" with these
downloadable fliers.


News Releases
http://www.ayme.org.uk/article.php?sid=21&id=302
Downloadable news releases for journalists and charities interested in
reporting on Severe ME/CFS: A Guide to Living.


DLA Supplement
http://www.ayme.org.uk/article.php?sid=21&id=300
Download the Severe ME/CFS: A Guide to Living supplement on completing a DLA
form.
 
 

ME: The Shocking Disease

*Please repost* *Please repost* *Please repost* *Please repost*

Just explaining the basic facts of M.E.falls far short of really getting
across what a hell on earth M.E. really is. In thinking about M.E. and all
of the terrible things that are happening so unfairly to so many wonderful
innocent people year after year, and how extremely severe a disease it can
be physically, many of us keep coming back to one word. Shocking. Above all
else, M.E. is a shocking disease.

This paper explains why M.E. is THE shocking disease.

(You may like to show this paper to friends and family members to help them
understand better what it means to have M.E.)

See: http://www.hfme.org/metheshockingdisease.htm

---------

M.E.: The shocking disease by Jodi Bassett March 2010.

In trying to explain how extreme the suffering is, and how urgent the need
is for genuine advocacy in Myalgic Encephalomyelitis (M.E.), just relating
the basic facts isn't enough. I can tell you the following basic M.E. facts:

M.E. is similar in a number of significant ways to illnesses such as
multiple sclerosis (MS), Lupus and Polio.

M.E. occurs in epidemic and sporadic forms, over 60 M.E. outbreaks have been
recorded worldwide since 1934.

What defines M.E. is a specific type of acquired damage to the brain (the
central nervous system) caused by a virus (an enterovirus). It is an acute
(sudden) onset neurological disease initiated by a virus infection with
multi system involvement which is characterised by post encephalitic damage
to the brain stem.

The term M.E. was coined in 1956 and means: My = muscle, algic = pain,
Encephalo = brain, mye = spinal cord, itis = inflammation. This neurological
damage has been confirmed in autopsies of M.E. patients.

M.E.is primarily neurological, but also involves cognitive, cardiac,
cardiovascular, immunological, metabolic, respiratory, hormonal,
gastrointestinal and musculo-skeletal dysfunctions and damage. M.E. causes
an inability to maintain bodily homeostasis. More than 64 individual
symptoms of M.E. have been scientifically documented.

M.E. can be more disabling than MS or polio, and many other serious
diseases. M.E. is one of the most disabling diseases there is. More than 30%
of M.E. patients are housebound, wheelchair-reliant and/or bedbound and are
severely limited with even basic movement and communication. In some cases
M.E.is fatal.

The hearts of M.E. patients only pump barely pump enough blood for them to
stay alive. Their circulating blood volume is reduced by up to 50%. Thus
M.E. patients are severely limited in physical, cognitive and orthostatic
(being upright) exertion and sensory input. This problem of reduced
circulating blood volume, leading to cardiac insufficiency, is why every
brief period spent walking or sitting, every conversation and every exposure
to light or noise can affect M.E. patients so profoundly. Seemingly minor
'activities' can cause significantly increased symptom severity and/or
disability (often with a 48-72 hour delay in onset), prolonged relapse
lasting months, years or longer, permanent bodily damage (e.g. heart damage
or organ failure), disease progression or death.
     If activity levels exceed cardiac output by even 1%, death occurs. Thus
the activity levels of M.E. patients must remain strictly within the limits
of their reduced cardiac output just in order for them to stay alive.  M.E.
patients who are able to rest appropriately and avoid severe or prolonged
overexertion have repeatedly been shown to have the most positive long-term
prognosis.

M.E.is a testable and scientifically measurable disease with several unique
features that is not difficult to diagnose, even within just a few weeks of
onset, using a series of objective tests.

M.E.is a debilitating neurological disease which has been recognised by the
World Health Organisation (WHO) since 1969 as a distinct organic
neurological disorder. M.E. is classified in the current WHO International
Classification of Diseases with the neurological code G.93.3.

Many patients with M.E. do not have access to even basic appropriate medical
care. Medical abuse and neglect is also extremely common and often results
in the disease becoming severe (and in some cases, death is caused).

Governments around the world are currently spending $0 a year on M.E.
research.


In my opinion, these facts however, fall far short of really getting across
what a hell on earth M.E. really is. In thinking about M.E. and all of the
terrible things that are happening so unfairly to so many wonderful innocent
people year after year, and how extremely severe a disease it can be
physically, I keep coming back to one word. Shocking. Above all else, I
think M.E. is a shocking disease. These are a few of the biggest shocks I've
faced, and that others with M.E. also experience:


1.  The shock of extremely severe sudden illness and disability. The first
big shock is how quickly and completely your entire life can change forever.
Having your body suddenly act very differently and not be able to do all the
things you have done many thousands or millions of times before, is surreal.
This is especially so when this occurs suddenly from one day to the next, as
it does with M.E. The sense of unreality can be so strong that you almost
wonder why everyone else is still going on as if nothing had changed and
everything was normal.

For me, in March 1995 at the age of 19, I went from being very healthy and
happy one day to having problems standing upright for more than a few
minutes at a time, the next. I also suddenly had severe problems sleeping,
thinking and remembering, speaking and understanding speech, eating many
foods that I previously tolerated perfectly well, coping with even low
levels of noise and light and vibration, coping with warm weather, sitting,
with my heart and blood pressure, with any type of physical or cognitive
activity causing severe relapse unless within very strict limits as well as
memory loss, facial agnosia, learning difficulties, severe pain, alcohol
intolerance, blackouts and seizures, intense unusual headaches, , burning
eyes and ear pain, rashes (and other skin problems), severe nausea and
vertigo, total loss of balance when I closed my eyes or the room was dark,
muscle weakness and paralysis, and so on. I suddenly had over 60 individual
symptoms, and could only do 40% or less of my pre-illness activities.

It's a bit like one day waking up and suddenly everyone around you is
speaking another language and looking at you strangely for not being able to
understand what is being said. Or from one day to the next the sky suddenly
going from blue to yellow, or all chocolate suddenly tasting like fish or
olives, and bananas tasting like broccoli - but only to you. At first, not
only is it very hard to just accept, but also to really believe it is
happening, and that it won't just go away as suddenly as it came. It's all
just such a big shock.


2. The medical system shock. As if that weren't enough all on its own, the
next big shock involves lifelong beliefs about our medical system. You soon
find out that the disease you have is one of those that is treated
differently from many others, that not every disease is viewed equally, and
that bizarrely this has nothing at all to do with the type of disease or the
severity of the disease or its symptoms, or testable abnormalities, or the
possibility of death, but other non-scientific and non-medical factors. It
has to do with political and financial factors, and marketing.

You find out that some diseases get you 'red carpet' treatment or  some see
that you treated very well, others adequately, and unfortunately several
leave you with no real care at all. Even worse, not only with no appropriate
care at all, but often subject to serious mistreatment from the
professionals meant to be there to help you.

Most people trust absolutely that if they get severely ill, they can go to
an emergency room and be given the appropriate medical care. I used to trust
in that too. But I was to soon find out the hard way that that didn't apply
to me anymore. If I went to the emergency room, there was an enormous chance
I'd not only get no help at all, but be ridiculed into the bargain or told
'to stop exaggerating' or refused the appropriate tests (and have older test
results ignored). I may then be told, illogically, and despite all the
evidence to the contrary that 'there is nothing wrong with you, go home and
let us care for someone who is really ill.' I'd be far more likely to come
out of the emergency room far sicker than when I'd gone in (in crisis), as
well as being verbally abused and insulted as well.

Dealing with GPs and specialists is also much the same most of the time, for
those with M.E. Probably the most common treatment recommended to patients
with M.E. is graded exercise therapy (GET). (Both formal and informal
programs.) This is a 'treatment' that can and very often does leave M.E.
patients, including children, far sicker afterwards for months, years or
longer (wheelchair-reliant, bedbound, needing intensive care etc.). It can
also cause death. While it may help some of those with other illnesses very
different to M.E., it has a ZERO percent chance of providing any benefit to
M.E. patients. If even a tiny percentage, say 2%, of almost any other
patient group were made as ill and disabled by any treatment (as M.E.
patients are by GET) it would be a huge scandal. It'd make all the papers
and there would be all sorts of legal actions and enquiries, and outpourings
of public outrage. Yet the incidence of M.E. patients being recommended, or
forced or coerced into, this torture ...sorry, 'treatment' is growing every
year. Nobody much cares or even knows. It's more than shocking or just very
cruel, it's obscene.

Most people have no idea that all this medical abuse occurs regularly, to
people just as ill or even far more ill as those with MS or Lupus. When you
do try to tell them most often they refuse to believe it could be true, so
strong is their belief in the fairness and logic of our health system and
how much thought, objectivity and careful investigation supposedly goes into
giving a final diagnosis and recommending treatment. It's a shocking loss,
this loss of belief in a health safety net and our medical system being
based on logic, science and due care. It's such a comforting belief, it's
hardly surprising people don't want to give it up, even if it is false.

Thanks to inappropriate medical care, I, as with many other M.E. patients,
soon struggled to do even 5% of the activities I had pre-illness. I was made
housebound and 99% bedbound, and have remained so for the last 10 years. My
heart-rate skyrockets and my blood pressure drops dramatically after just a
few minutes of standing or other overexerting activity. It feels like a
heart attack in every organ, and as if my heart is about to explode, or just
stop.  (The highest heart-rate measurement I've had is 170 bpm and the
lowest blood pressure measurement is 79/59 - both were taken at times when I
was only moderately ill, relatively speaking, nowhere near my most severe
state. Scary.) I have spent most of the last decade, alone and in pain in a
dark quiet room, coping with many different and hideous symptoms. I accept
that some people get ill, and that I am at risk of this as much as anyone.
What is hard to take is that, like so many M.E. patients, my reaching such a
severe disability level and losing so much of my life was completely
unnecessary and would very likely not have happened had I had even the most
basic appropriate support in the beginning.


3. The welfare system shock. Despite being extremely ill and disabled, M.E.
patients are often shocked to find that getting the basic welfare payments
is very difficult or impossible. Bizarrely enough, the system is set up in
such a way that you can actually be too ill to qualify, as so many hoops are
required to be jumped through to lodge a successful claim, without which the
claim is denied. Ironically, the government agencies seem to have little
interest in this conundrum, nor in how much sicker jumping through all their
hoops makes you long-term. The ignorance of doctors and their inability to
give you an unbiased examination is also a huge problem. Again, what is far
more important to them is the name and reputation of your disease, not how
ill and disabled you are. It is not uncommon to find instances of M.E.
patients living for years with no disability payments, having to live on the
mercy of family, or becoming homeless and having to eat out of bins.


4. The media shock. The public largely trusts the information given about
different diseases in the media. I did too, and I still do largely, provided
the article is about MS or cancer. But like many M.E. patients, I was
shocked to find out that when it came to diseases like mine, there was no
onus at all on the reporter to be accurate. While a furore would ensure if
articles made up entirely of false information were printed about MS or
cancer, almost every article that I read about M.E. was of this unbelievably
low standard, yet nobody seemed to care at all.

Similarly, the outrage when certain groups are made fun of in what is deemed
an offensive manner, simply does not occur when it's M.E. that is being
ridiculed. For some reason M.E. patients (in the UK particularly) are fair
game. This is because despite the fact that our governments have created
laws designed to stop discrimination on the basis of gender, race and
disability and so on, discrimination against M.E. patients is not only
allowed, but is actively supported and promoted by government. (For
information on why this occurs, see What is M.E.?)


5. The human rights groups shock. While the big human rights groups seem
very eager to help many other groups and even individuals facing small or
large problems, they seem completely unwilling to even look at the severe
abuse of human rights facing perhaps a million M.E. patients worldwide, let
alone do anything at all to actually help. This when even the smallest
action on their part, the smallest indication of support for the M.E. cause,
would be such a huge step forward for the cause. Such ignorance and
injustice is shocking.


6. The friends and family shock. What makes coping with all these things
unimaginably worse is having to do so with little if any support from
friends and family - and even while facing abuse or ridicule from friends
and family. Some patients are even disowned by their whole family, or all
but a few members. Loved ones often believe the same financially-motivated
media and government-sanctioned nonsense about your disease as the doctors
do. They often accept the 'miracle cure' stories in the media featuring
people with a hundred different mild (and psychological) or transient
diseases jumping up and down about how they have been 'cured' by the mumbo
jumbo money-making scam of the week - despite the fact that NONE of these
stories features actual M.E. patients (or even patients with diseases
similar to M.E.). It's such a huge shock that those you love could see you
so ill and refuse to support you and that they have more trust in doctors
than in your integrity. They can't believe that if you were seriously ill, a
doctor could miss it, even though that is exactly what has happened. They
can't believe that the media would be allowed to print completely fictional
information about your disease often based on mixed and entirely unrelated
patient groups, even though they are doing just that. Not having medical or
media (or government) support makes getting support from loved ones almost
impossible.

Having loved ones not stand by you hurts a lot, in many ways. It takes yet
another huge swipe at what self-esteem you have left after being treated
like dirt by your trusted doctors and welfare departments, leaving study
incomplete and/or losing your job and your ability to support yourself
and/or being denied the services of a carer when you urgently need one.
After so many attacks on your integrity and worth you can't help but be worn
down by it all. Particularly when you're so ill and even more so if you are
under the age of 18 when you become ill. You inevitably feel, not depressed,
but as if you must personally be unworthy somehow of any type of care or
compassion. Such messages inevitably sink in to some extent after constant
repetition, no matter how educated, strong or mentally fit you are.


7. The M.E. charities and support groups shock. Realising that very, very
nearly all of the charities and support groups that claim to be there to
help you actually do not represent or support you at all and are actually
hostile to your interests is yet another huge shock. You go to a group that
you trust finally to give you the unadulterated facts and to be working
towards improving things and all you get is more abuse and misinformation.
Just as bad, you also don't get all the important information about M.E.
that could make an enormous positive difference to your life and to your
health.

Those few groups and individuals that are involved in genuine advocacy are
often able to do very little due to the physical constraints of M.E., the
poverty associated with M.E., and the lack of public and other support. M.E.
patients are just too ill to fight effectively for themselves like AIDS
patients did. They can't rally or march and many can only barely read or
write now. AIDS patients also often have an early asymptomatic period of
illness, which enables significant contribution to activism - but for M.E.
patients the severe symptoms begin on day one.


8. The M.E. advocacy nightmare shock. Perhaps most shockingly of all, when
you try to do some advocacy yourself and tell people about the double
standards, discrimination and unfair treatment, and show them mountains of
solid facts, you are met with disbelief. People cannot or will not believe
that doctors could be so cruel, unscientific, ignorant  and illogical.

M.E. itself also seems to work against you, in an unexpected way. People say
it's too severe and there are too many symptoms. The entirely unique way we
respond to even trivial exertion and are so disabled by it, instead of
inspiring sympathy, seems to actually inspire disbelief. People seem to
(bizarrely) believe that there must be some limit on how bad a disease could
be, and that such severe illness couldn't be possible long-term. That you
couldn't possibly be too ill to sit or stand up, use the phone, speak or be
spoken to, listen to music, write a letter, spend time in hospital or take a
short trip out of the house. That you couldn't possibly be so ill that you
can only dream of one day being well enough to use an electric wheelchair
sometimes, if you're really lucky - and so on. As if all humans were
'guaranteed' somehow to always be able to at least do such simple tasks, and
to only ever suffer a 'reasonable' level or time period of disability. But
the body does not acknowledge such limits. If only.

Thus in 20 years not only has no progress been made in the fight for basic
rights, but things have become much worse for M.E. patients and they
continue to grow worse still as the years pass.



M.E. is a shocking disease in every way. M.E. is at least as disabling as
any of the other very serious diseases (such as MS) and the extremely high
level of suffering and isolation it causes can last for many years or
decades at a time. Yet M.E. patients get the least amount of support and
compassion and such high levels of abuse and outright ridicule.

Some of us have some family and/or friends on board, some have welfare, some
have basic medical care (although almost none have the same level of care
the average MS patient has). But most don't have all or even most of these
things and when they do they have often taken many years to get and are very
hard won. By the time many of us have some of these things we have been made
severely ill by going so long without the right care, that it's a somewhat
hollow victory. Especially when we also know that so many others aren't so
lucky and that every year thousands of patients, adults as well as teenagers
and very young children, are still needlessly being made severely ill or
dead though ignorance and misinformation.

It's like an episode of 'The Twilight Zone.' You want to wake up screaming
some mornings, thinking it's a nightmare and that such a hell just couldn't
possibly be real. That so many innocent people couldn't be so ill, abused
and persecuted, with almost none of the public even caring or knowing. That
such a flimsy and unethical global medical scam couldn't be so successful at
fooling almost everyone, despite the fact it's based on nothing more than
smoke and mirrors, scientifically speaking. It's all just far too shocking
to take in sometimes.

I invite readers to be shocked about what is happening, even if M.E. hasn't
yet affected someone you love or know. The facts are utterly profoundly
shocking - I haven't explained even half of them here. If you have the facts
about M.E. you should be not only shocked by what is happening, but also
appalled, disgusted and outraged. I beg you to please use that shock, act on
it and use it to help try and change things, and to see M.E. patients
finally get some basic fair treatment and justice. The only way change will
occur is through education, with enough people simply refusing to accept
what is happening any more. M.E. patients need your help so desperately,
right now.

---------

The full paper is available here:
http://www.hfme.org/metheshockingdisease.htm

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.

Some time ago I was invited to be a guest blogger on the 'Planet Thrive'
website, and 'The Shocking Disease' paper is what I eventually submitted.
You can read the blogpost here:

http://planetthrive.com/2010/03/myalgic-encephalomyelitis-the-shocking-disease/


Best wishes everyone,
Jodi
--
The Hummingbirds' Foundation
for Myalgic Encephalomyelitis:
www.hfme.org

Monday, March 29, 2010

Think Beyond the Label – Workers & Employees with Disabilities

 

 

Scientists find there may be two forms of multiple sclerosis

 

 

SolveCFS Bio Bank

From the CEO's Desk
March 29, 2010
Web version of this announcement:
http://capwiz.com/cfids/utr/1/BXMCMHIUDH/DSIQMHKHQO/4937930911 (includes links to other materials)


Announcing the SolveCFS BioBank!


When the CFIDS Association launched its expanded research initiative in
mid-2007, we heard loudly and clearly from the CFS community that
research was its top priority. In response, we:
- recruited a full-time scientific director;
- issued a Request for Applications focused on biomarkers and methods
for early detection, objective diagnosis and effective treatment of
CFS;
- adopted updated funding policies;
- strengthened our peer review system;
- awarded six innovative grants;
- established the first funded network of linked investigators;
- convened an intensive three-day meeting of experts;
- conducted site visits of funded projects; and
- kept the community informed about our progress using a host of print
and electronic publications, recently expanded to include regular
webinar programs.

When scientific director Suzanne D. Vernon, PhD, joined our staff in
late 2007, one of her goals was to fill scientific
"infrastructure" gaps she believed were barriers to
attracting new investigators and validating some of the known
biological markers published by research groups in the U.S. and other
countries. Linking bench researchers to well-defined clinical
populations was one of the foremost challenges.

In September 2009, Suzanne completed her certificate in public health
genomics at Sarah Lawrence College and she met leaders from Genetic
Alliance (GA), a network of more than 1,000 disease-specific advocacy
organizations committed to transforming health through genetics.
Suzanne discovered how GA had created a centralized registry and
repository to enable translational research for a host of underfunded
and rare conditions, addressing the cohort access issue.

Genetic Alliance president Sharon Terry recounts her goal in
establishing the GA BioBank with other leaders in disease research
advocacy: "The Genetic Alliance BioBank was built with
organizations like the CFIDS Association in mind -- to provide them
with the infrastructure to pursue sophisticated, novel research
collaborations with academia and industry to develop new diagnostics
and therapeutics to better understand and treat disease."

Suzanne conducted her own careful research, comparing the Genetic
Alliance model to several others, weighing the costs and benefits to
the organization, the patient community and researchers in academia and
industry. Summarizing her findings, she told our board of directors
last fall, "The Genetic Alliance uses a cooperative, cost-sharing
model that translates into a tightly controlled, comprehensive
infrastructure for biobanking. Organizations that start from scratch
often spend millions of dollars just to put the systems and
documentation in place before a single sample is collected."

Genetic Alliance set high standards for participant involvement in
research, exceeding requirements of all applicable federal, state and
local laws, rules and regulations. The GA BioBank earned a Certificate
of Confidentiality from the National Institutes of Health. The GA's
board of directors oversees the fiscal management and annual audit. It
provides standardized protocols and allows for ethical re-contact and
robust privacy and security protections. Our legal counsel agreed with
the assessment.

In December, the Association's board of directors approved plans to
join the Genetic Alliance BioBank and to apply for approval from GA's
Internal Review Board (IRB) for the SolveCFS BioBank. Chairman of the
board Adam Lesser recalls the discussion about initiating a biobank.
"It was the next logical step to advance research in CFS, and
Genetic Alliance offered tremendous capacity to augment our research
program." Final approvals were granted by the IRB earlier this
month.

On behalf of the board of directors and staff of the CFIDS Association
of America, I am delighted to introduce the SolveCFS BioBank. The
SolveCFS BioBank will collect and store a bank of biological samples
(such as blood, tissue, cells and DNA) and clinical information at the
GA BioBank laboratory facility from individuals with CFS and healthy
individuals (controls) aged 10 and older from the U.S. and other
countries.
It ensures that individual privacy and confidentiality are
protected and that samples are available to researchers whose research
projects have been reviewed and approved by the CFIDS Association of
America Medical Research Advisory Committee.

Through the SolveCFS BioBank, individuals can enroll once and will then
contribute information to multiple projects, advancing our
understanding of CFS on multiple fronts
. Because the SolveCFS BioBank's
purpose is dedicated to research and in order to preserve the privacy
and security of all participants' information, participants do not
receive personal results about any tests performed using their samples.
The Association will provide regular updates about how SolveCFS BioBank
samples are being used, as well as the results of research conducted.
Researchers will be required to publish their results in peer-reviewed
medical journals.

Since securing approval for the SolveCFS BioBank, the Association has
established its first study collaboration. We are working with several
clinical and academic collaborators and major industry partners. As
such, enrollment criteria for the inaugural study will be rather
strict. As Suzanne indicates, "The SolveCFS BioBank is an
innovative research resource that will be used for validation of
promising biomarkers, genetic studies, family studies and genomics
research. It will be a resource for discovery, diagnostics and targeted
treatments. We hope to have adequate funding soon to expand recruitment
beyond the inaugural study requirements. This will truly empower more
people affected by CFS to participate in this exciting research, and
will ultimately lead to the answers we all seek."

We have recently updated our www.SolveCFS.org website to house
extensive information about the SolveCFS BioBank. We look forward to
sharing additional updates, news about expanded recruitment and, best
of all, results from research that utilizes the SolveCFS BioBank.

We are grateful to Association supporters for making this new
initiative possible. It is just one of many reasons that 2010 promises
to be a year of important advances in making CFS widely understood,
diagnosable, curable and preventable.

Sincerely,

K. Kimberly McCleary
President & CEO
The CFIDS Association of America

P.S. Please continue (or begin!) your support of these and other
important Association efforts by making a tax-deductible gift today
using our secure website at
http://capwiz.com/cfids/utr/1/BXMCMHIUDH/DEFUMHKHQP/4937930911.