Friday, December 31, 2010

Great advocacy reminders and tips

Thanks, Ann!
 
Just came across this article from The CFS Patient Advocate.  It's about a
presentation given at ILADS this year, by the tireless AIDS advocate Dr. Marcus
Conant. Great reminders and advice!


http://cfspatientadvocate.blogspot.com/2010/11/dr-marcus-conant-and-advocacy.html


Dr. Marcus Conant and Advocacy
 
In his quest to help his daughter get better, the Patient Advocate went to hear
Dr. Marcus Conant at the recent ILADS conference. Dr. Conant was one of the
courageous few that clinically engaged the AIDS epidemic in San Francisco in the
early 1980's. Dr Conant did not flinch in the face of this terrible burden
thrust upon him. Instead he treated these near dead and dying patients - and
became a great advocate for them. He knows the business of disease advocacy, and
when he speaks it makes sense to listen.

Recently Dr. Conant moved from S.F. to New York, where he is a consultant. Among
other things, he has an interest in this XMRV retrovirus. Dr. Conant sees many
parallels of the current situation with neuro-immune illness and the early years
with AIDS. An astute Dr. Burrascano invited Dr. Conant to lecture. Dr. Conant
gave his lecture without remuneration.

In his half-hour lecture entitled "Lessons learned from AIDS", Dr. Conant gave a
stirring talk enumerating a number of key points. The Patient Advocate has read
over his notes on this lecture and Dr. Conant's advice to us follows:

"What the AIDS patient learned to advocate for was not compassion from the
public, was not sympathy from the public - what they learned to advocate for was
research dollars, research funds."

"Focus energies on getting money for research. Find out the etiology of this
disease." (in this case he was speaking of Lyme)

"Focus on research, not suffering."

"Don't trust the press." "The press is not your friend." - they are corrupt and
have another agenda.

"Congress is your last resource, not your first." "The federal government is not
your friend." You first have to prove that something is there.

"Dont blame your adversaries" "Bring them (your adversaries) in, don't cut them
out." Otherwise you will have to wait until they are dead - and that could be a
long time. (Dr. Conant was not talking about deadly enemies here. He expressed
clearly that he would not waste any time on someone whose mind he could not
change. In this above quote, he was emphasizing the notion of inclusion - and of
not unnecessarily making enemies)

"Develop coordinated activism" How do we best get funds to study this disease?

A month later this presentation still reverberates in the mind and heart of the
Patient Advocate. This talk could not have come at a better time.

With ME/CFS, we stand at a crossroads. At this moment the government is sitting
on the HHS XMRV blood study group's phase II study. The government is worried
about the blood supply. The government has the data and it is pretty convincing.
What will they do and when?

Meanwhile NIH research money is not coming to the WPI. The WPI funding
applications have been turned down at least four times. They are having trouble
getting their current research published in legitimate journals. Why is this?
Whatever limited funding they have is drying up. Whether this all is by design
is anyone's guess.

Meanwhile other research into XMRV is going on around the country in both
expected and unexpected places, fueled by discretionary funding or siphoned off
from other projects. Researchers are drawn by natural interest to this new
retrovirus. Here is one recent study. And here is another (from MN, no less).
These ongoing research projects hold the key to the solution of this ME/CFS
XMRV-related illness. Science is the answer. The WPI and their affiliates
triggered this. They tripped the switch on all this research. This flashpoint
Institute needs funding in order to come up with more answers. Research is the
answer. We cannot wait any longer.

Thursday, December 30, 2010

Lessons Learned As 'Doctors Behaving Badly' Tour Ends

 
"Medical boards are slow to act" -- when I complained about my doctors, I was told the medical board doesn't have enough money to investigate every complaint, so they only investigate if you've lost life or limb.  The fact that my lifestyle was radically changed by medical incompetence was not enough; I had to either die or have the wrong leg amputated.
 
Remember, this doctor was handed a correct diagnosis on a silver platter -- diagnosed by a virologist in 1988, and re-diagnosed by a rheumatologist a few months before I saw this medical moron.  It was not an innocent "misdiagnosis", it was intentionally changing the right diagnosis to a wrong one, and then playing Blame The Patient when "nothing you said made sense" (because I know to feed a doctor all the symptoms that prove it's not depression) and when the wrong pills for the wrong condition simply made me sicker.
 
Read "How Doctors Think" by Jerome Groopman, MD, for proof that this attitude is endemic in the medical field.
 
The goal is not, to use Dr. Bell's word, Game Show Medicine, where the first person to ring in with an answer wins -- it's to get the RIGHT diagnosis.  Groopman's book says that doctors often reach a diagnosis in 18 seconds and then stop listening.  So if the first word out of your mouth is "fatigue", they're going to leap straight to depression and ignore anything you say after that that contradicts that diagnosis -- he stopped listening long before you got to things like fever and swollen glands and rashes that prove it's something else. 
 
In my case, the magic word was "divorced" -- I was a four-eyed middle-aged divorcee who was obviously depressed because my husband ran off with a 20-something hardbody and just needed to adjust to the idea that no man wants a woman my age.  He never bothered to ask questions, just assumed, or he would've found out that my ex was with a woman the same age as me, who outweighed me by a good 50 pounds, and he didn't leave me, I kicked him out.  I was very happy being rid of that expensive albatross. 
 
 

Wednesday, December 29, 2010

Plasma neuropeptide Y: a biomarker for symptom severity in chronic fatigue syndr

A provisional pdf of this study can be found here:
http://www.behavioralandbrainfunctions.com/content/6/1/76

Plasma neuropeptide Y: a biomarker for symptom severity in chronic
fatigue syndrome.

Chronic fatigue syndrome (CFS) is a complex, multi-symptom illness
with a multisystem pathogenesis involving alterations in the nervous,
endocrine and immune systems. Abnormalities in stress responses have
been identified as potential triggers or mediators of CFS symptoms.

This study focused on the stress mediator neuropeptide Y (NPY). We
hypothesized that NPY would be a useful biomarker for CFS.

Methods: The CFS patients (n = 93) were from the Chronic Fatigue and
Related Disorders Clinic at the University of Miami and met the 1994
case definition of Fukuda and colleagues.

Healthy sedentary controls (n = 100)) were from NIH or VA funded
studies. Another fatiguing, multi-symptom illness, Gulf War Illness
(GWI), was also compared to CFS.

We measured NPY in plasma using a radioimmunoassay (RIA). Psychometric
measures, available for a subset of CFS patients included: Perceived
Stress Scale, Profile of Mood States, ATQ Positive &Negative Self-Talk
Scores, the COPE, the Beck Depression Inventory, Fatigue Symptom
Inventory, Cognitive Capacity Screening Examination, Medical Outcomes
Survey Short Form-36, and the Quality of Life Scale.

Results: Plasma NPY was elevated in CFS subjects, compared to controls
(p=.000) and to GWI cases (p=.000).

Receiver operating characteristics (ROC) curve analyses indicated that
the predictive ability of plasma NPY to distinguish CFS patients from
healthy controls and from GWI was significantly better than chance
alone. In 42 patients with CFS, plasma NPY had significant
correlations (<0.05) with perceived stress, depression,
anger/hostility, confusion, negative thoughts, positive thoughts,
general health, and cognitive status.

In each case the correlation (+ or -) was in the anticipated direction.

Conclusions: This study is the first in the CFS literature to report
that plasma NPY is elevated compared to healthy controls and to a
fatigued comparison group, GWI patients. The significant correlations
of NPY with stress, negative mood, general health, depression and
cognitive function strongly suggest that this peptide be considered as
a biomarker to distinguish subsets of CFS.

Author: Mary Fletcher, Martin Rosenthal, Michael Antoni, Gail Ironson,
Xiao Zeng, Zachary Barnes, Jeanna Harvey, Barry Hurwitz, Silvina
Levis, Gordon Broderick, Nancy Klimas
Behavioral and Brain Functions 2010, 6:76

Friday, December 24, 2010

NICE Timing, Coincidence and 'CFS/ME'.

NICE Timing, Coincidence and 'CFS/ME'.

Dear All,

I am a registered patient/activist stakeholder for the NICE 'CFS/ME'
Clinical Guideline 53 (CG53) that was published in the UK in August
2007. The scheduled 3-yearly review was somewhat delayed by NICE. I have
today however, 24 December 2010, at 0.30 am on Christmas Eve no less,
received notification of their review decision in the following direct
email from NICE. I should just add that, on the matter of the timing of
such publication, it is reassuring to know, is it not, that British
Taxpayers get such great value from our NICE civil servants - who are
apparently willing to work all hours and put the welfare of 'CFS/ME'
patients above their need to attend to personal pressing matters such
preparing one's family Christmas or even their own need for sleep?

NICE's said email to me:

"Subject: NICE: NICE Alerts
Date: 24 Dec 2010 00:30:01 +0000
From: webalert@website.nice.org.uk
To: contact@angliameaction.org.uk
NICE Alerts
Bringing you the latest news, features and guidance advice from NICE
24 December 2010
Guidance by topic
the following guidance topics matching your health area preferences have
been published or updated...
Chronic fatigue syndrome / Myalgic encephalomyelitis
[ http://guidance.nice.org.uk/CG53 ]."

A click on the jolly old link in the NICE email brings you to the
following information on their web page:

"Chronic fatigue syndrome / Myalgic encephalomyelitis (or
encephalopathy); diagnosis and management...
Guideline review
Consultation on review proposal with stakeholders: 01 November 2010 - 14
November 2010
Review decision date: December 2010
Review decision:
During the public consultation on NICE's review proposal for clinical
guideline 53 on the diagnosis and management of CFS/ME, a number of
stakeholders advised that the results of the PACE Trial are due to be
published in 2011. As this significant trial may affect NICE's final
decision regarding whether its existing guideline warrants an update,
NICE is deferring its announcement until further information is
available. This is so that the conclusions made by NICE are as accurate
and informed as possible. In the interests of high quality patient care,
it is important that health professionals continue to adhere to the
existing recommendations as they represent best clinical practice for
the NHS [ http://guidance.nice.org.uk/CG53 ]."

Prior to this announcement, and surprisingly, even before they had
received submissions from stakeholders on the matter during a very
short-lived consultation period of 1st to 14th November 2010, NICE
Guideline Development Group (GDG) members had announced that in their
view there was no need to update CG53 at all. Now I know what all you
readers are thinking, obviously those diligent folk at NICE not only
serve patients and taxpayers exceptionally well through hard work at all
hours, they provide clairvoyancy services as well and had precognition
that stakeholders would not wish to have CG53 revised either...

Alas no. I can assure you, NICE's actions came as something of a shock
to myself and other patient/ charity stakeholders as not only did we
agree with leading interested parties that CG53 was "not fit for
purpose" in the first place, we most certainly did know that there was
good scientific evidence showing it was even more unfit for purpose now
than when it was published. This in fact supported the case for urgent
and very radical revision. Moreover, we provided evidence that the
previous GDG membership may not have been collectively professionally
competent to carry out their role in accordance with a) NICE's own
Guideline Development Manual, and b) the European Union's 'AGREE
Instrument' which, along with the WHO, attempts to maintain minimum
international standards for clinical guideline development. We
subsequently set about formally drawing NICE's attention to that very
evidence and reasoning. See for example the EAME / 25% ME Group
Stakeholder Responses to NICE at:

http://www.angliameaction.org.uk/docs/eame-nice-cg53-response-nov2010.pdf
http://www.angliameaction.org.uk/docs/25megroup-nice-cg53-response-nov2010.pdf
http://www.25megroup.org/Campaigning/NICE/25MEgroup%20NICE%20Stakeholder%20ProForma%20-%20Nov%202010.pdf

Well I know what you are thinking now, "there's nowt as queer as folk",
as they say in Yorkshire (England): one minute those NICE people say
nothing is wrong with Guideline 53 and the next they seem to be saying
they may need to tweak it because "a number of stakeholders advised that
the results of the (equally tweaked - see below) PACE Trial are due to
be published in 2011." Ooooooo, I would just love to meet those
stakeholders! They too must be blessed with some form of clairvoyancy
because that there PACE Trial publication is soooo long overdue (years)
I'm amazed that anyone can actually know when it is likely to be
published! Perhaps one thing's for sure, if said stakeholders'
clairvoyancy talents are a reality, then the fact that the PACE results
"are due to be published in 2011" will at least mean those poor
taxpayer-salaried PACE Principle Investigators will not be burning the
midnight-oil rushing the results out on the eve of another public
holiday - New Year's Eve?

It is interesting that NICE refer to PACE as "this significant trial".
It is indeed very significant, but I wager not quite for the reasons
they hold? PACE is funded by a UK government agencies that are
responsible for spending taxpayers' money wisely, for upholding
scientific standards and for caring for seriously ill people. The most
outstanding reason the PACE Trial is perhaps "significant" however is
because it has been alleged to be pregnant with "scientific fraud" and
is the subject of multiple complaints, including a major formal erudite
critique by Professor Malcolm Hooper - details of which can be read by
following the paper-trail at these web-links:

http://www.meactionuk.org.uk/magical-medicine.htm
http://www.meactionuk.org.uk/Further_Articles.htm

Back to the question of timing more generally. It's a funny old thing
you know? There's far too much conspiracy theory in the ME community and
not nearly enough recognition of simple coincidence:

It is just coincidence that nearly all official/government 'CFS'
research funding and committees seem to support the interests of the
permanent health insurance industry.

It is just coincidence that when Mikovits et al published XMRV findings
in Autumn 2009 that subsequent negative non-replicating studies were
published by others at break-neck speed.

It is just coincidence that two USA government studies on retroviruses
in 'CFS' patients in 2010 were pulled at the point of publishing and
that the CDC one with the negative result was reinstated days later
whilst the positive NIH one nearly didn't get published at all.

It is just coincidence that the British Government banned ME patients
from blood-donation for life at a time of international concern over
gamma retroviral infection of humans generally and 'CFS' patients in
particular.

It is just coincidence that four Retrovirology papers and one commentary
were published on the same day in December 2010 highlighting somewhat
shall we say incomplete coverage of "contamination" issues alleged in
'CFS' retrovirology research.

It is just coincidence that, at the same time, the UK Myalgic
EcephalOPATHY Association published articles highlighting such
"contamination" matters but without balancing comment from researchers
like Dr Mikovits and Dr De Meirleir.

It is just coincidence that the day after the Retrovirology
"contamination" publications most comment in the mainstream media went
even further than the authors in claiming the "new evidence" indicated
retroviruses were not a problem for 'CFS' patients.

It is just coincidence that the UK charity 'Action for ME' removed
patient input from its governance, appointed a former Royal Navy Vice
Admiral as its head, receives government money and does so much to
support psycho-social matters pertaining to 'CFS/ME' (see:
http://www.meactionuk.org.uk/Corporate_Collusion_2.htm ).

It is just coincidence that so many of those professionals promoting
psychosocial theories in 'CFS/ME' have links to the medical insurance
industry (see: http://www.meactionuk.org.uk/Corporate_Collusion_2.htm ).

It is just coincidence that Professor Simon Wessely, architect of so
much 'CFS/ME' psychosocial theory, was a founding director of PRISMA, a
company providing CBT-GET services to private and public agencies (see:
http://www.meactionuk.org.uk/Corporate_Collusion_2.htm ).

It is just a coincidence that Both Professor Wessely and Dr Charles
Shepherd of the Myalgic EncephalOPATHY Association have such a long
association with the big-pharma supported pressure-group known as
'Healthwatch' (see:
http://www.meactionuk.org.uk/Corporate_Collusion_2.htm ).

It is just coincidence that, in his self-confessed desire to shift ME
from being recognised as a physical illness to a mental one, Professor
Wessely called for step by step constructive relabelling to such ends
(see: Managing patients with inexplicable health problems. Baruch
Fischhoff & Simon Wessely, BMJ 2003; 326 : 595 doi:
10.1136/bmj.326.7389.595. Published 15 March 2003:
http://www.bmj.com/content/326/7389/595.full ).

It is just coincidence that, subsequent to Wessely's call for
relabelling, Dr Shepherd promoted substitution of the WHO-recognised
Myalgic Encephalomyelitis term with the completely uncategorised Myalgic
EncephalOPATHY one - and most medical dictionaries say the hallmark of
the latter is "disturbance of mental function".

It is just coincidence that the current round of WHO International
Classification of Diseases (ICD-11) has been missing its own published
deadlines, is not acting as transparently as it should and that patients
cannot find out the exact role and number of 'Wessely-School' supporters
having input on the question of WHO revision/ reclassification of ME/PVFS.

It is just coincidence that so many biomedical ME researchers /
clinicians have such difficult and fraught career paths.

I could go on and on persuading you of more mere coincidences that are
not worth joining together into some naive conspiracy theorist's
nightmare conclusion. Instead however, I digress: herewith, a plea for
personal advice concerning my own timing, sleep issues and indeed,
nightmares... As is the case for most ME patients, the timing and
quality of my sleep are often problematic. Recently though, matters have
been compounded with the same recurring and vivid nightmare - I dream I
am being mugged in a large oak-panelled committee room by a group of
prostitutes smoking Cuban cigars, then a fellow mugee in the dream keeps
endlessly repeating Pastor Martin Niemöller's famous words on the
Hitlerian regime:

"They came first for the Communists,
and I didn't speak up because I wasn't a Communist.

Then they came for the trade unionists,
and I didn't speak up because I wasn't a trade unionist.

Then they came for the Jews,
and I didn't speak up because I wasn't a Jew.

Then they came for me
and by that time no one was left to speak up."

Er, do you think I could use more melatonin at bed time? Advice
gratefully received.

I thank you for your time and wish a successful New Year to all those
genuinely working for science-based justice for ME patients. Here's
looking forward to genuine "best clinical practice for the NHS..."

Genuinely yours,

Kevin Short.
24 December 2010.
contact@angliameaction.org.uk
[Permission to repost anywhere in the world except on the UK LocalME
weblist]

Oh, and by the way, please do give as much money as you can spare to:

The Whittemore Peterson Institute:
http://www.wpinstitute.org/xmrv/

Invest in ME:
http://www.investinme.org/index.htm

ME Research UK:
http://www.meresearch.org.uk/

-MESSAGE-ENDS-

What the Yuck: How long is safe for a juice fast? – The Chart - CNN

Tuesday, December 21, 2010

CFS Chronicles: Retrocrapologists Allow Infectious Retrovirus to Run Rampant

 
"as Klimas said to Coffin during the meeting, "But you can't get an antibody response from a contaminant." Of course, Coffin might not know this about XMRV. If you can't find it in the first place, you aren't going to find an antibody to it either."
 
* * *
Or, you can't find what you're not looking for.
 
My quacks insisted "all blood tests are normal" but refused to run the tests recommended by CFIDS.org.  The tests they did were supposed to be normal in a CFS patient.
 
They weren't interested in doing x-rays to find the source of my pain, either.  They "knew" it was being caused by my being a middle-aged divorcee.  Amazing how a chiropractor managed to figure out that there were 3 fractured vertebrae when all these MDs who think chiros are quacks found nothing wrong ... oh, wait, because they weren't looking for a physical cause, and he was!
 
We've known for years that doctors hear what they want to hear and see what they want to see.  In 1987-88, my boss and co-workers could see I looked like death warmed over, and was frequently on the verge of passing out.  The doctor, however, saw nothing wrong because he didn't want to see anything other than a woman trying to manipulate her husband into letting her quit her job.  In 2000-2001, the doctor saw nothing wrong, because once he heard the word "divorced" he didn't see the need to listen to any symptoms to know that I was just depressed because my husband left me for a 20-something size 2.  (Except that I was the one who threw him out, and his new girlfriend was my age and outweighed me by a good 50-75 pounds.  But why let the facts stand in the way of a good stereotype.)
 
When put on the spot later, the doctor insisted "nothing you said made sense".  Of course not!  I was spoon-feeding him all the symptoms that prove it's CFS and not depression, which didn't make sense in the rubric that he was trying to sledgehammer them into.  Everything I said contradicted depression, therefore, the problem wasn't that he was misdiagnosing but that the patient was too stupid to know what symptoms she was describing.

Check out CFS Chronicles

CFS Patient Advocate: The Mouse that Roared*

Monday, December 20, 2010

XMRV Treatment Trials for CFS are Now Justified

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Send an Email for free membership
~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~
  >>>>> Help ME Circle <<<<
>>>>    20 December 2010  <<<<
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~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~


Special Edition







THE NICEGUIDELINES BLOG



Doctor Speedy and ME in search of medical honesty




Sunday, December 19, 2010





XMRV treatment
Trials for CFS are
now justified



Valerie Courgnauda, Jean-Luc Battinia,
Marc Sitbona,1, and Andrew L. Masonb,1


aInstitut de Génétique Moléculaire de Montpellier,
Centre National de la Recherche Scientifique, Unité
Mixte de Recherche 5535, Universite Montpellier 1
and 2, F-34293 Montpellier Cedex 5, France; and
bDepartment of Medicine, University of Alberta,
Edmonton, AB, Canada T6G 2E1




As we currently lack postulates to prove a causal
association with a prevalent agent and a chronic
disease with genetic predisposition, it would also be
appropriate to conduct interventional studies.


Indeed, the Helicobacter pylori hypothesis of peptic
ulcer disease was only accepted after Barry Marshall
showed that bacterial eradication with antibiotics
cured peptic ulcer disease


(21). Studies to gain proof of principle have been
performed with antivirals in other chronic, idiopathic
diseases linked to retroviral infection, such as
primary biliary cirrhosis associated with mouse
mammary tumor virus, another possible murine
zoonosis (22).


Trials using a combination of reverse transcriptase
inhibitors led to significant improvements in clinical,
histological, and biochemical outcomes in these
patients, albeit with some evidence of viral
resistance to therapy (23).


Such studies are now feasible for CFS, because
reverse-transcriptase inhibitors, such as tenofovir
and emtracitabine, and the integrase inhibitor
raltegravir can inhibit XMRV (24).


The caveats for conducting clinical trials in patients
with CFS and MLV infection are that the potential
benefits of treatment should outweigh the risks;
also, studies should be conducted as randomized
controlled trials with meaningful and feasible
endpoints using robust therapies.


At this juncture, studies to establish proof of
principle are justified to determine whether safe
antiviral regimens can impact on CFS and to
determine whether xenotropic or polytropic MLV is
causally associated with this debilitating disease.





``````


The full PDF file:

Mouse retroviruses and chronic fatigue syndrome:
Does X (or P) mark the spot?

is attached for private members, but can also be
found at: http://bit.ly/hHspa8

Thursday, December 16, 2010

Dr. Mikovits in Santa Rosa January 17

XMRV Retroviruses and Human MLV-related Viruses - Updates on GMA Research + reminder Dr Mikovits, Santa Rosa, Jan 17

In 2008, Dr. Mikovits presented information on XMRV to a symposium of researchers of chronic illness, hosted by Gordon Medical. In 2009, our office was asked to provide samples for XMRV testing, to see whether the retrovirus might be found in asymptomatic people who have close contact (contact controls) with CFS patients. Though we do not yet have final results on those tests, it does appear there is a higher incidence of XMRV in our contact controls than was found in other studies in the general healthy population. Dr. Paul Cheney, another CFS researcher, found almost 50% of his contact controls are positive for XMRV.

After the Science paper was published<span>, Dr. Mikovits offered to provide testing for more patients through GMA</span>. Just over 200 people provided blood samples for that study, including people with CFS and many other chronic conditions, in an effort to learn whether XMRV might be a cause of other chronic illness than CFS.

Gordon Medical has only preliminary analysis of the data, as we are still waiting for results on many of the samples. So far we have <span>52 people who test positive for XMRV</span> through our office, whether by culture (viral particles) or by serology (antibodies). Those people include patients with CFS, Lyme disease, Hashimoto's Thyroiditis, depression, reactivity to mold, and cancer. Dr. Cheney is finding that nearly all of his Lyme and mold related cases are positive for XMRV, so we expect that we will have more positives in those groups as more results come in.

We know the participants have been anxiously waiting for further results. We have not received any new results from WPI in the last few months, as Dr. Mikovits has been working to get the research moved into WPI's new building, and to establish the consistency of XMRV testing. XMRV has proven to be extremely difficult to find with commonly available tests. There have been studies in which researchers were unable to find the retrovirus in any participants, and there is controversy over whether this is due to testing difficulties, or whether XMRV is not as prevalent as claimed by the researchers who have found it in patients.

"Proving that xenotropic (XMRV) or polytropic (MLV-related viruses) are present in Chronic Fatigue Syndrome would be the first step towards determining if these viruses actually cause disease. This is an important question, because a large fraction of the world population, estimated at 0.4-1%, is affected by CFS.", states Dr. Ila Singh, another XMRV researcher.
October 26, 2010 - Dr. Ila Singh - Viruses

Dr. Mikovits believes that a positive test for either culture or serology indicates an infection, as retroviral infections are considered to be lifelong. If you are positive for one, it is not necessary to test for the other. However, if you are negative for one, that does not rule out the possibility of infection. In that case it is necessary to do both tests to ensure the best chance of finding the infection if it is present. We are still waiting for secondary testing on those study participants who tested negative on one of the tests.

Recently, Dr. Gordon spent a weekend with Dr. Cheney, sharing ideas on how treatment might work for XMRV patients. It is still unknown whether XMRV and the other HGRV viruses are the primary cause of the illnesses they are associated with, or whether infection reflects an inability to maintain effective immune surveillance.

For now, all treatments are experimental. Some patients may choose to do a trial with antiretrovirals (ARV), either natural or conventional. Conventional ARVs are the drugs used to treat HIV and AIDS. While XMRV and HIV are not identical, some of the knowledge gained in treating HIV may be useful in discovering what works for XMRV.

It is important to manage inflammation, one of the primary issues with retroviruses. There are natural and conventional options to treat inflammation, depending on your needs and preferences. Working to balance hormone levels is another aspect of treatment, as these retroviruses seem to be hormone sensitive. Finally, if you have other health issues or infections, it is important to continue treatment to manage those. While XMRV may be proven to cause other diseases, it isn't known yet whether treating the retrovirus directly will be sufficient.

Dr. Mikovits has been actively in touch with physicians who are experimenting with XMRV treatment, and we look forward to hearing any new information she might have to share in January.

If you have a question for Dr. Mikovits, please send the to susan@gordonmedical.com . They will be passed on to Dr. Mikovits, and she will do her best to answer questions during the time allowed for her talk.

Gordon Medical Research Is Proud to Host

Dr. Judy Mikovits, PhD
Co-author of the seminal 2009 paper "Detection of an Infectious Retrovirus, XMRV, in Blood of Patients with Chronic Fatigue Syndrome"

Speaking on Chronic Fatigue Syndrome, the XMRV Retrovirus and Human MLV-related Viruses
How they relate to chronic inflammatory neuroimmune diseases, including CFS, Multiple Sclerosis, Fibromyalgia, chronic Lyme disease, and cancer..

Free of charge to the public

Tax deductible contributions to the Whittemore Peterson Institute gratefully accepted.

This event is fragrance free

Please do not wear scented products to the event

Monday January 17, 2011

2:00-3:30 PM

The Friedman Event Center

4676 Mayette Avenue

Santa Rosa, CA 95405

source = http://forums.aboutmecfs.org/showthread.php?9087-Gordon-Medical-Associates-%28Collaborator-with-WPI%29-Mikovts-lecture-and-XMRV-Findings&p=143738&viewfull=1#post143738

Monday, December 13, 2010

What I Offered Was All I Had to Give « My CFS Life

 
 Am I truly required to give up all enjoyment of life in order to fit another's wishes? 
 
* * *
This was the big surprise when I lost my job.  After 12 years of  working
full-time with CFS, I'd forgotten what life was like when I didn't need  to
conserve energy to make it through a week at work.  It had become so  second
nature that I was no longer giving it any thought.  Suddenly, I  could think
"gee, I wish I could go there" and realize that there was no reason  I
couldn't.  If spending a few hours on the bus to get to a specialty  store laid
me out for a couple days, so what?  I had nothing else I  had to do that
week.

I came to realize that I'd had very little Quality of Life while working 
because being well enough to work meant constricting life in so many other 
ways.  Now that I was too sick to work, I actually had more Quality of Life 
because I could go to a movie if I wanted to -- I was doing things that were
more enjoyable than merely working and resting up to go back to work.

Friday, December 10, 2010

WPI End of Year Letter

 
Tell your family and friends what you most want for Christmas is a cure.

Stripped-Down Health Plans Must Disclose Limitations To Consumers :

 
It will be interesting to see whether I get such a letter from my insurance company, reflecting the ACTUAL terms of the policy, as opposed to the nominal PPO-1000 coverage indicated by the card.  They've stripped it down so that it covers hospitalization only, with a huge deductible, which does not meet the criteria of the new law, as opposed to the adequate coverage provided by the PPO-1000.

Maes & Twisk vs. Harvey & Wessely

Blessing's & thank u all, for ALL u do.
marie moore

pubmed

BMC Med. <javascript:AL_get(this, 'jour', 'BMC Med.');> 2010 Jun 15;8:35.
Chronic fatigue syndrome: Harvey and Wessely's (bio)psychosocial model
versus a bio(psychosocial) model based on inflammatory and oxidative and
nitrosative stress pathways.

Maes M <http://www.ncbi.nlm.nih.gov/pubmed?term=%22Maes%20M%22%5BAuthor%5D>,
Twisk FN<http://www.ncbi.nlm.nih.gov/pubmed?term=%22Twisk%20FN%22%5BAuthor%5D>
.

Maes Clinics @ TRIA, Piyavate Hospital, Bangkok, Thailand. crc.mh@telenet.be
Abstract

BACKGROUND: In a recently published paper, Harvey and Wessely put forward a
'biopsychosocial' explanatory model for myalgic encephalomyelitis/chronic
fatigue syndrome (ME/CFS), which is proposed to be applicable to (chronic)
fatigue even when apparent medical causes are present.

METHODS: Here, we review the model proposed by Harvey and Wessely, which is
the rationale for behaviourally oriented interventions, such as cognitive
behaviour therapy (CBT) and graded exercise therapy (GET), and compare this
model with a biological model, in which inflammatory, immune, oxidative and
nitrosative (IO&NS) pathways are key elements.

DISCUSSION: Although human and animal studies have established that the
pathophysiology of ME/CFS includes IO&NS pathways, these abnormalities are
not included in the model proposed by Harvey and Wessely. Activation of
IO&NS pathways is known to induce fatigue and somatic (F&S) symptoms and can
be induced or maintained by viral and bacterial infections, physical and
psychosocial stressors, or organic disorders such as (auto)immune disorders.
Studies have shown that ME/CFS and major depression are both clinical
manifestations of shared IO&NS pathways, and that both disorders can be
discriminated by specific symptoms and unshared or differentiating pathways.
Interventions with CBT/GET are potentially harmful for many patients with
ME/CFS, since the underlying pathophysiological abnormalities may be
intensified by physical stressors.

CONCLUSIONS: In contrast to Harvey and Wessely's (bio)psychosocial model for
ME/CFS a bio(psychosocial) model based upon IO&NS abnormalities is likely
more appropriate to this complex disorder. In clinical practice, we suggest
physicians should also explore the IO&NS pathophysiology by applying
laboratory tests that examine the pathways involved.

PMID: 20550693 [PubMed - indexed for MEDLINE]PMCID: PMC2901228Free PMC
Article

Images from this publication.See all images
(3)<http://www.ncbi.nlm.nih.gov/images?term=20550693[PMID]>Free
text<http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2901228/>
  <http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2901228/figure/F1/>
Figure 1
*The (bio)psychosocial model for 'chronic fatigue' of Harvey and Wessely*.
Chronic fatigue syndrome: Harvey and Wessely's (bio)psychosocial model
versus a bio(psychosocial) model based on inflammatory and oxidative and
nitrosative stress
pathways<http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2901228/>
BMC Med. 2010;8:35-35.
<http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2901228/figure/F2/>
Figure 2
*The (bio)psychosocial model for myalgic encephalomyelitis/chronic fatigue
syndrome (ME/CFS) of Vercoulen et al.* Fatigue: the subjective feeling of
fatigue; fatigue subscale of the Checklist Individual Strength. Focusing on
(Bodily) Symptoms: somatisation subscale of the Symptom Checklist. (Level
of) Physical Activity: Sickness Impact Profile (SIP) subscale mobility
(SIP-MOB) and the Physical Activities Ratin...
Chronic fatigue syndrome: Harvey and Wessely's (bio)psychosocial model
versus a bio(psychosocial) model based on inflammatory and oxidative and
nitrosative stress
pathways<http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2901228/>
BMC Med. 2010;8:35-35.
<http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2901228/figure/F3/>
Figure 3
*The inflammatory and oxidative and nitrosative (IO&NS) pathophysiology of
myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)*. COX-2 =
cyclo-oxygenase 2; iNOS = inducible nitric oxide synthase; PUFA =
polyunsaturated fatty acids; NFκB = nuclear factor κB.
Chronic fatigue syndrome: Harvey and Wessely's (bio)psychosocial model
versus a bio(psychosocial) model based on inflammatory and oxidative and
nitrosative stress
pathways<http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2901228/>
BMC Med. 2010;8:35-35.
   Publication Types, MeSH Terms,
Substances<http://www.ncbi.nlm.nih.gov/pubmed/20550693#>
Publication Types:

   - Comparative Study <javascript:AL_get(this, 'ptyp', 'Comparative
   Study');>
   - Letter <javascript:AL_get(this, 'ptyp', 'Letter');>
   - Review <javascript:AL_get(this, 'ptyp', 'Review');>

MeSH Terms:

   - Fatigue Syndrome, Chronic/immunology* <javascript:AL_get(this, 'mesh',
   'Fatigue Syndrome, Chronic/immunology*');>
   - Fatigue Syndrome, Chronic/pathology* <javascript:AL_get(this, 'mesh',
   'Fatigue Syndrome, Chronic/pathology*');>
   - Free Radicals/toxicity* <javascript:AL_get(this, 'mesh', 'Free
   Radicals/toxicity*');>
   - Humans <javascript:AL_get(this, 'mesh', 'Humans');>
   - Inflammation/pathology* <javascript:AL_get(this, 'mesh',
   'Inflammation/pathology*');>
   - Stress, Physiological* <javascript:AL_get(this, 'mesh', 'Stress,
   Physiological*');>

Substances:

   - Free Radicals <javascript:AL_get(this, 'subs', 'Free Radicals');>

LinkOut - more resources <http://www.ncbi.nlm.nih.gov/pubmed/20550693#>
Full Text Sources:

   - BioMed Central <http://www.biomedcentral.com/1741-7015/8/35>
   - PubMed Central<http://www.ncbi.nlm.nih.gov/pmc/articles/pmid/20550693/?tool=pubmed>
   - PubMed Central
Canada<http://pubmedcentralcanada.ca/articlerender.cgi?tool=pubmed&pubmedid=20550693>
   - UK PubMed Central <http://ukpmc.ac.uk/abstract/MED/20550693>

Medical:

   - Chronic Fatigue Syndrome - MedlinePlus Health
Information<http://www.nlm.nih.gov/medlineplus/chronicfatiguesyndrome.html>

Thursday, December 9, 2010

Why myalgic encephalomyelitis/chronic fatigue synd... [Neuro Endocr

 
"Recently, Jason et al (2006) reported that the mean age of patients with myalgic encephalomyelitis/chronic fatigue syndrome dying from heart failure, i.e. 58.7 years, is significantly lower than the age of those dying from heart failure in the general US population, i.e. 83.1 years. These findings implicate that ME/CFS is a risk factor to cardio-vascular disorder."
 
* * *
I have NO intention of dying any time soon.  I want to live to dance on Reeves' and Wessely's graves!

Hemispherx Biopharma Extends GP Pharm License to Mexico for Ampligen

Yvette Cooper and ME/CFS Misquote

 
"The correct statistic is that 90% of recoveries occur in the first year, not 90% of people recover"
 
* * *
In the first year (1987-1988), I did manage to recover enough to return to work full-time for 12 years.  When I lost my job in 2000, it was straight downhill, because what little was being done by doctors was all wrong -- they were treating me for conditions I don't have, with drugs known to be ineffective against CFS.
 
However, turning that quote around, 10% of recoveries happen after the first year.  While I'm certainly not recovered enough to return to a full-time job, proper treatment has finally broken the endless loop of pain causing insomnia, lack of sleep causing more pain, causing more insomnia and I am back on an upward trajectory.

Monday, December 6, 2010

THIS IS WHAT PATIENT ADVOCACY LOOKS LIKE - OSLERSWEB.COM

Dr. Judy in Santa Rosa CA January 17, 2011

http://www.facebook.com/event.php?eid=116039965127864&ref=mf

Dr. Judy Mikovits to speak in Santa Rosa, CA

Time
Monday, January 17, 2011 · 2:00pm - 5:00pm

Location
The Friedman Event Center
4676 Mayette Avenue

More Info
Gordon Medical Associates is proud to host: Dr. Judy Mikovits PhD

The XMRV Retrovirus and Human MLV-related Viruses

The latest updates on testing, treatments, and research into its
relationship to chronic neuroimmune disease, including Chronic Fatigue
Syndrome, Multiple Sclerosis, chronic Lyme disease, and cancer.

Survey finds gap in doctor-patient communication - USATODAY.com

 
 
"Only 48% of patients said they were always involved in decisions about their treatment"
 
"Emphasis on better communication has increased in recent years as the medical community has become more aware of its effect on patient healing. Since 1995, U.S. medical students have been required to get training in communication skills. And in 2005, the United States Medical Licensing Exam began to include testing on interpersonal and communication skills.

Communication skills and high patient-satisfaction scores can give hospitals a competitive edge as well as reduce malpractice claims, says Debra Roter, a professor at Johns Hopkins University in Baltimore."

* * *
With most doctors, my involvement in decisions about treatment was limited to "take it or leave it".
 
I had an argument with a doctor about something he wanted to prescribe which I'd been told never to take due to an adverse reaction to a related drug.  (Two days later, another doctor inquired "are they trying to kill you?" and concurred that I should never take anything in that family.)
 
Yet, despite the fact that it might be fatal, the doctor kept insisting "it'll be fine" and refused to change the prescription, even after I made it clear that I was not going to fill the prescription.  From his arrogant viewpoint, he won the argument because he was able to leave the room before I could make him do what I wanted.  However, he lost the patient because it was obvious that his ego was more important than my health.
 
 
 
 

The ad

 
if you haven't gotten a copy of the Washington Post today, this is what we're talking about.
 
TEXT:
New HIV-like Virus in the Blood Supply
Up to 20 Million Could Be Infected
 
FDA and NIH research recently uncovered a new family of retroviruses in 7% of healthy blood donor samples.*  This could mean that 20 million Americans are already infected.  These viruses were also detected in an astonishing 87% of Chronic Fatigue Syndrome patient samples.
 
Similar to HIV, this infection is likely to be transmitted through blood.**
 
Chronic Fatigue Syndrome, also known as Myalgic Encephalomyelitis or ME/CFS, is a serious and sometimes fatal neuroimmune disease that can be as disabling as chemotherapy or late-stage AIDS.  ME/CFS afflicts more than 1 million Americans. 
 
Will you or your child be next?
 
Stop the Suffering
We need More ME/CFS Research Now
 
 *footnote to research
**footnote to quote from Dr. Jerry Holmberg of DHHS
 

Three briefs from News On One Click

 7.  Autism & ME/CFS - A Modern Day Munchausen Syndrome By Proxy Scandal

Lisa Blakemore Brown, Psychologist
For whatever reason – and I can think of quite a few – vast numbers of professionals in legal, health and educational circles misconstrue symptoms of Autism, ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) and related disorders as child abuse and parents, usually mothers, are accused of Munchausen Syndrome by Proxy (MSBP/FII). I first came across this problem in 1995 and was so concerned that the entire system could be duped by this approach that I began to write about it in 1997 after a mother lost all four of her children, two of whom were ASD/ADHD. Over time I also saw an emerging pattern in MSBP cases – many children changed after  reacting to vaccines. In a recent news item on FOX in the United States, a case was reported in which the parents of a child with a mitochondrial disorder were accused of MSBP as they attended hospital very frequently with their ill daughter and the hospitals could not detect the mitochond rial condition. Now this is an interesting case because mitochondrial disorders are suspected as being at the root of many cases of ME/CFS and indeed Autism and recently the family of a young autistic, vaccine damaged child with a mitochondrial disorder, Hannah Poling, won considerable damages for the harm done to their child. To demonise parents of ill children whose conditions are iatrogenic by accusing them of MSBP adds insult to injury, is grossly immoral and unethical, destroys families and prevents recognition of children's real problems thereby preventing them getting the help they need, possibly forever.  Could we get it any more wrong?
Lisa Blakemore Brown, Psychologist
Related Links:
*
Parents Of Mitochondrial Disease Child Accused Of Munchausen Syndrome By Proxy
Kathryn Malone, My Fox9
*
Hannah Poling Autism-Vaccine Case: Implications for ME/CFS-Labelled patients
Lara, Health Advocate

 8.  
Red Cross Bars Chronic Fatigue Syndrome (ME/CFS) Patients From Donating Blood

The American Red Cross announced Friday that it is barring people with chronic fatigue syndrome from donating blood to reduce the risk of transmitting a virus that has been associated with the disease. The virus is known as xenotropic murine leukemia virus-related virus or XMRV. The National Heart, Lung and Blood Institute (NHLBI) Task force is conducting research to determine the frequency of the virus in the donor population, whether it is transfusion-transmitted, and whether recipients become infected and develop the disease, it said. Another task force that reviews blood safety for an organization known as the AABB recommended in June that blood collecting organization "actively discourage potential donors who have ever been diagnosed by a physician with chronic fatigue syndrome ... or myalgic encephalomyelitis (ME), from donating blood or blood components."  The statement said: "The Red Cross has implemented the AABB recommendations and has gone further to implement indefinite deferral for donors who reveal a history of a medical diagnosis of CFS." The recommendation came after new research strengthened the possible connection between the virus and the syndrome.
Rob Stein, The Washington Post  

 9.  
RiME Questions ME/CFS Apostate Countess Of Mar

ME/CFS patients stick it to big hat, no cattle Countess of Mar
(Caption & Pic Courtesy Of One Click)

The Committee on Standards in Public Life lays out seven principles. These include, objectivity, honesty and accountability. Did the Countess of Mar not condemn the CMO Report saying the terminology was ambiguous and confusing and that it denied the true nature of ME? Did you not argue for a strict adherence to G93.3 Code and criticise the use of GET, CBT? You signed up to the APPG Inquiry Report March 2010, yes? You realise that the 13 CNCCs and satellites set up from 2002 were based on the recommendations of the CMO Report which you criticised 16/4/02. Because the clinics were based on that report, many are saying that they are not about ME eg the clinics in Kent exclude people with neurological illness putting them outside the ICD 10 G93.3 classification; didn't you argue for a strict adherence to it 22/1/04? Does this mean that you are no longer trying to represent patients who have the illness described by G93.3 (and Canadian criteria) but patients who would fit wide definitions of CFS? Why the turnaround? Would you care to explain?
Paul Davis, RiME, Campaigning for research into Myalgic Encephalomyelitis
 

"Sick and Tired of Chronic Fatigue Syndrome"

Received from TomK:
 
[I was asked to post this by somebody who wishes to remain anonymous]

Here is an article from the Mountain View Voice in California about someone
with severe ME/CFS. Mountain View is Google's international headquarter and
a part of Silicon Valley.
 
http://www.mv-voice.com/news/show_story.php?id=3673#add_comments  
or http://bit.ly/f1foir  
 
A lively discussion has followed. More comments are welcome.
 
* * *
It's always important for those who are able to write letters to the editor and comments to educate people to what lurks behind the silly name.
 
Remember, the purpose is to educate, not to argue.  As Sgt. Friday says "just the facts, ma'am."
 
 

Wow!

Although I recognize all those articles as being almost verbatim recitations of the press release, just the fact that it's being published in so many different places, reputable websites, with varied audiences, gets the word out that we are now a force to be reckoned with, and, more importantly, that CFS is a virus, not a laughing matter.  By the end of today, more people than ever will know about it.
 
Now let's swamp the Washington Post and Miami Herald with letters to the editor thanking them for having the guts to run the ad (in the case of the Post) or article (in the case of the Herald)!
 
 
 
Actually, every website where you see the story should rate a thank you note.
 
For the letters to the editor, keep it short, about 200 words.
 
I have stuff to do today, so I'd appreciate the rest of you carrying the ball on this one.
 
 
One week free trial of the Post:
 
Just the ad:

Chronic Fatigue Syndrome Patients Run First-ever Ad in Wash Post

 

Sunday, December 5, 2010

Hillary asks Why?

How did the Soviet Union discredit its dissidents? It called them mentally ill.
 
 
* * *
And this is exactly what CDC and the Wessely School have done to us -- they've discredited patients by announcing that we're mentally ill and therefore not to be believed.
 
Yet, ironically, when a mentally-ill person appears in front of a Disability judge with no objective evidence but his own testimony that he's "depressed and suicidal", benefits are granted on the spot -- they BELIEVE him.  It's those of us who have abnormal blood test results, friends who testify to our physical inabilities, who are not believed, and made to wait a decade or more for benefits.
 
WHY????
 
Hillary's speech at the above link answers a lot of those questions.
 
Meanwhile, remember:
First they ignore you, then they insult you, THEN YOU WIN!
 
They've been insulting us for 25 years.  Thanks to the Whittemores and Dr. Judy, we're about to win.  The ball is on the five-yard line.  We're (finally) that close. 

Is “CFS” the agency’s new Tuskegee?

Hillary Johnson asks:
Is "CFS" the agency's new Tuskegee? I believe that unless we are vigilant history will see it that way. We are observing the natural history of a catastrophic disease in real time. We've been writing live history here, and we can't sit around passively waiting to see how it turns out. The career quacks at the CDC have all the time and money and PR support in the world. Patients have none of those things. But patients are not entirely without resources. For one thing, we can look to the Whittemore Peterson Instititute, which thus far demonstrates no proclivity whatsoever to buy shares in the CFS industry.

Chronic Fatigue Syndrome Patients Run First-ever Ad in The Washington Post

 
 Be sure to pick up your copy tomorrow (Monday)

NY presentation on March 29, 2011

Source: New York Academy of Sciences
Date:   November 30, 2010
URL:    
http://www.nyas.org/Events/Detail.aspx?cid=0918b8d8-9a46-4334-b194-23ade9c2a7aa
         http://wpinstitute.org/news/docs/BloodPathogens.pdf


Pathogens in the Blood Supply
-----------------------------

Tuesday, March 29, 2011 - 1:00 PM - 5:00 PM
The New York Academy of Sciences

Presented by the Emerging Infectious Diseases &
Microbiology Discussion Group

According to the American Blood Center, approximately 14
million units of blood are transfused in the United
States every year. Current screening methods routinely
test for several pathogens, including the Hepatitis B
virus, Hepatitis C virus, Human Immunodeficiency viruses,
Types 1 and 2, Human T-Lymphotropic virus Types 1 and 2
and syphilis. Recent headlines indicate that the blood
supply may contain other organisms, such as Xenotropic
Murine Leukemia Virus Related Virus (XMRV), that are not
currently being identified in these routine screens. This
symposium will diagnose the current problems, reveal
recent advances in the testing and screening of the blood
supply, and will explore future directions.


Organizers

Lorrence H. Green, PhD, Westbury Diagnostics
Jennifer S. Henry, PhD, The New York Academy of Sciences


Speakers

W. Ian Lipkin, MD, Columbia University
Judy A. Mikovits, PhD, Whittemore Peterson Institute for
  Neuro-Immune Disease
Gail Moskowitz, MD, Healthcare Consultant

Presented by the Emerging Infectious Diseases and Microbiology
Discussion Group at the New York Academy of Sciences


Registration

Member: FREE
Non-Member: $30
Non-Member
(Student/Postdoc): $15


Location

The New York Academy of Sciences
7 World Trade Center
250 Greenwich St, 40th Fl
New York, NY 10007

For additional information,
e-mail nymeetings@nyas.org or call 212.298.3725


Sponsorship Opportunities

For sponsorship opportunities, please contact Cristine Barreto
at cbarreto@nyas.org or 212.298.8652

--------
(c) 2010 New York Academy of Sciences

Friday, December 3, 2010

Elevated Protein in Fibro Patients shows it’s not depression

Tired of hearing that your fibromyalgia is just a form of depression? Brain-derived growth factor (BDGF), a protein found in the serum, was shown to be elevated in fibro patients.* However, in people with depression, this same protein shows up at lower than normal levels. ...

Happy Int'l Day for Persons with Disabilities!

... recognizing the rights of & values persons with disabilities can bring into every aspect of society. It's also what Think Beyond the Label is all about.
If you can, please take a minute to share our link w/ a hiring mgr, small business owner or someone who might otherwise not know about us & help us get one step closer to a world where everyone thinks beyond the label.
 
ThinkBeyondTheLabel.com

What Laura Hillenbrand does for her CFS

"It's a combination of the arrogance that is an occupational hazard of medicine and a certain degree of sexism."

In the intervening years, Hillenbrand has experimented with an array of treatments, including steroid hormones, daily vitamin B-12 shots, a gluten-free diet, acupuncture, and Chinese herbal ­remedies. "They didn't help," she says, "and in some cases made things much worse. So because of the way a seemingly small mistake can land me in bed for years, I've become very conservative. The most effective thing I've done is to learn, through trial and error, how best to manage my body—eating bland, easy-to-digest food, keeping the temperature in the house low, and always stopping myself the ­moment I feel myself sliding into fatigue."

When possible, she also practices yoga, not only to prevent her muscles from atrophying but to maintain her emotional balance as well. "It's not just the poses, but also the meditation," she says, "and learning and applying the philosophy behind it: ­acceptance, living in the moment, focusing on being peaceful, being alive to what is beautiful and good all around me.

... since there’s still no treatment for CFS, once she was diagnosed, her medical bills became quite low. The usual luxuries (travel, clothes, fancy restaurants) hold no appeal, either. The disease complicates digestion, so Hillenbrand’s diet is spare and unchanging: Wheetabix and skim milk for breakfast, toast with almond butter and blueberry spread for lunch, and baked chicken with baby-food vegetables for dinner."

* * *

My health has not been as easily damaged as Laura's, so I've been more of a risk-taker with treatments. You name it, I've probably tried it: ACTH, powdered adrenals, 5HTP, carnitine, CFS/Fibro Formula from www.DrRodger.com, someone has recently suggested Lysine... Some gave me a bit of a bounce, others had no effect at all. My theory is that I will take the first bottle of something and then stop for a few weeks. Do I backslide without it? If not, then either any improvement was a coincidence, or whatever deficiency has been corrected. I'll periodically stop all these things to judge whether they are still providing a benefit.

The big thing for me was finding the tipping point -- which at one point was so low that 3 trips a day from the bedroom to the kitchen for meals was too much -- and pacing myself to keep energy expenditure below that level. The stumbling block in conversation, though, is people who don't grasp that "I feel fine" is not the same as "I am fine"; I feel fine because I don't overdo. It doesn't mean that I'm ready to jump back into life at full speed, simply that I've come to acceptance with the limitations and learned to live with them. I feel fine because I don't work 8 hours a day. If I tried to do that, I'd quickly feel worse.

Laura Hillenbrand in Elle

Thursday, December 2, 2010

Update on My Health

In response to a comment asking for an update on how I'm doing ... better than 10 years ago in some ways, worse in others.
 
I now have a doctor who takes me seriously, believes that it's a physical illness, and is not trying to fob me off with anti-depressants and pep talks.  This one understands that when I say "I can't" it means that I physically can't, not that I'm afraid to try.  Just having a doctor who believes you is a huuuuge help.
 
The good days aren't as good as they were, but the bad days aren't as bad, either.  I now exist mostly in "happy medium" land, with few days differentiable as "good" or "bad".  If I were permanently stuck where I was then, I wouldn't be able to stand it, and would be one of those CFS patients contemplating suicide – that wasn't living, it was merely existing. 
 
Dr. Murphree (www.DrRodger.com) had told me you need at least one year of good sleep to make up for each year of bad sleep, therefore, 2010 was the earliest I could expect to reach maximum recovery; if this is as good as it gets for the rest of my life, it's tolerable.  I can follow the plot of a TV show I haven't seen 1000 times before.  I can sit up for a few hours without passing out.  Traveling to visit my parents isn't a piece of cake, but it's no longer impossible; the trip may drain me but it won't kill me.
 
Since the pain is now being addressed, I'm sleeping more than 2 hours a night, and while 5 hours a night is far from ideal, it is enough to be more functional.  10 years ago, I'd wake up, read the newspaper, and already be mentally and physically exhausted.  I spent 23½ hours a day horizontal to avoid passing out.  A half-hour trip to the doctor would land me in bed for several days.  I had no immune system left. Every physical resource had been completely exhausted, and I wasn't sleeping enough to replenish myself.
 
Now, I can read the newspaper and still have enough brainpower left to read something else; I often need a nap to get through the day, which makes it impossible for me to return to an office job, but I'm able to do some work at home and return the work in a reasonable time frame – days, not weeks.   10 years ago this week, I accepted a 40-hour research/writing job, and even with subcontracting some of the online research work to a friend, it took over two months to complete because I had to spend so much time lying down in a dark room, working less than 5 minutes per hour.  I still can't do 40 hours of work in one week, but I could realistically do it in one month instead of 2½.
 
I still get lightheaded and need to lie down, but it's not constant.  I went to the doctor last week and although I had to lie down immediately on returning home, the trip didn't cost me an entire week of resting up for and resting up from.  The digestive problems aren't gone but they're no longer a daily issue; my first waking thought is no longer "I'm going to throw up."
 
Knock wood, last winter I only lost a few days to sinus problems, as opposed to the winter of 2000-2001 where I had one severe sinus headache nonstop for months on end and couldn't get off the horizontal for months as a result.  A combination of improved sleep and Dr. Murphree's CFS/Fibro Formula seems to have done the trick of getting my sinuses back under control.  http://www.vipdispensary.com/prod_detail_list/htc_chronic_fatigue_fibromyalgia  – mark your calendar, because you get a discount on Tuesdays!  (To order, use PIN #RMURPH)
 
As a friend recently mused, at this age, we're never sure how much of what we're feeling is the CFS and how much is typical for our age.  I can't do as much on my good days as I used to.  Is that because I've been mostly sedentary since 2000, or is it a sign that Cheney's cardiac insufficiency is starting to catch up to me?  I can't afford the couple thousand dollars for another cardiac test to find out.
 
My first specialist in 1988 had the theory that if you fix the sleep disturbance, a lot of the rest will fix itself.  Dr. Murphree agrees.  Whether it's sleeping pills or pain pills, somehow improve the quality/quantity of sleep, and then you'll see what remains to be addressed pharmacologically. 
 
Fortunately, I came across the clinical trial for the experimental sleeping pills and enrolled myself over the objections of the doctors who were choosing to believe that hours in bed equates to hours asleep, therefore, in their opinion, I didn't need sleeping pills because "you were sleeping too much already".  That year of good sleep revitalized my immune system so it could begin to control the virus again; that, alone, probably saved my life.
 
Now I look forward to the day they're doing clinical trials at WPI so I can get more magic pills (some sort of anti-viral) that may help me get back on my feet. 
 
Because I've been doing yoga and resistance exercises all along, I have not lost muscle tone (just stamina), so I'm a step ahead if the opportunity presents itself to go back to work.  Right now, still not possible, but looking a lot more like reality than it did 10 years ago when I was basically just waiting to die.
 
 
 

 
 
 
 
 

The Book Bench: The Exchange: Laura Hillenbrand : The New Yorker

 
With link to Laura's article about CFS

Signs You’ll Get Divorced

9. If you're a woman who has recently been diagnosed with cancer or multiple sclerosis, your marriage is six times more likely to end in divorce than if your husband had been diagnosed with those diseases instead.

A study of "partner abandonment" revealed that husbands are six times more likely to leave sick wives than wives are to leave sick husbands. "Men have a much harder time being caretakers than women do," Sember observes. "Men find it hard to juggle that kind of responsibility, particularly if the wife has always been the one to fill that role." Moreover, "often women are more able to take time off from work to care for an ill spouse than men are."

MJ Glantz et al. (2009). Gender disparity in the rate of partner abandonment in patients with serious medical illness. Cancer, 115 (22).

* * *

You are NOT alone.  Three-quarters of marriages affected by chronic illness end in divorce.  The statistic is roughly 90% when the sick partner is the wife.

 

 

Wednesday, December 1, 2010

International Disability Rights Monitor

 
 
The International Disability Rights Monitor (IDRM) is an international grass-roots research project designed to document and assess the status of people living with disabilities worldwide. It represents on ongoing collaboration between the Center for International Rehabilitation (CIR) and many international and national disability groups. The IDRM is the world's only systematic international shadow monitoring report focusing on disability rights.
 
 
 
Let's put together something to get their attention.

Hire Learning | Resources for Disabled Job Hunters

Dr. W. Ian Lipkin, Virus-Hunting Master - NYTimes.com

 
"If scientists are lucky, they'll identify one novel virus in their whole life," said Dr. Anthony S. Fauci, director of the National Institute of Allergy and Infectious Diseases. "Lipkin really stands out from the crowd."
 
The emergence of H.I.V. in the 1980s first drove Dr. Lipkin to search for viruses. At the time, he was a neurology resident at the University of California, San Francisco, and was watching many patients fall ill with AIDS. It took years for scientists to discover the virus responsible for the disease. Dr. Lipkin worried that in years to come, new viruses would claim more lives because of this lag. "I saw all this, and I said, 'We have to find new and better ways to do this,' " Dr. Lipkin said.
 
"There isn't anybody any better at this than Ian Lipkin," said Dr. Fauci. "If he can't find it, it probably doesn't exist."
 
* * *
Today is World AIDS Day.

Pass it on!

Submitted by Mary Schweitzer <marymsch@comcast.net>:


We've got two mainstream articles on XMRV, two good interviews with Laura Hillenbrand recognizing the severity of her disease, and a very empathic BBC article on M.E. in just this past week!

Okay, everybody, go to work, - go to the article website, click "mail to," and mail those articles out to anybody you can think of.

We want the media to know these stories are popular - and they ought to be!

The point isn't to respond - don't criticize them [I wasn't crazy about the NY Times one]. In this exercise, we just pass them on through their own "mail to" system (usually an envelope on the page to click on).

If you can't find that, then still pass on the URL to as many friends as possible, because they count hits.

AND WE WANT THEM TO KNOW THESE ARTICLES GENERATE LOTS OF HITS (=INTEREST)! [For that matter, maybe doing this can help CREATE lots of interest]

So here they are:

Newsweek on everything:
http://www.newsweek.com/2010/11/28/could-a-virus-cause-chronic-fatigue-syndrome.html

New York Times:
http://www.nytimes.com/2010/11/23/science/23prof.html

Wall Street Journal:
http://blogs.wsj.com/health/2010/11/17/gearing-up-for-the-big-search-for-xmrv/

Washington Post:
http://www.washingtonpost.com/wp-dyn/content/article/2010/11/28/AR2010112803533.html

BBC:
http://www.bbc.co.uk/news/uk-england-dorset-11830123

Forward away!

Mary Schweitzer
 
* * *
The more hits they get, the more times the story is e-mailed, the more likely they are to continue covering the subject.  Send it to yourself.  Send it to the person who sent it to you. 

THE NICEGUIDELINES BLOG: My take on CFS & XMRV as of today

Twenty-five years of the Barts Fatigue Service Margaret Williams

Twenty-five years of the Barts Fatigue Service

Margaret Williams 1st December 2010


The Barts "Fatigue Service" 25th birthday party held on 29th November 2010
was proclaimed by the Wessely School as being a mile-stone achievement in
their "service" for people with ME/CFS (known by them "CFS/ME").

Their celebrations gave rise to numerous critical appraisals of exactly what
has been achieved by them in those 25 years from ME/CFS sufferers'
perspective (this being the disorder in which the Wessely School profess to
be the experts and which they are allegedly studying in the £5 million MRC
PACE Trial, even though on 12th May 2004 the Parliamentary Under Secretary
of State at the Department of Health, Dr Stephen Ladyman, confirmed that GPs
were offered financial inducements – a more refined term than "bribes" – to
persuade patients who do not suffer from ME/CFS to agree to be entered into
the trial, which would seem to indicate that something is seriously wrong
with the PACE trial).

Given that behavioural interventions may help some people with
fatigue-inducing somatoform disorders
, the self-congratulations and obvious
pride of Professor Peter White's "Fatigue Service" staff and others in the
Wessely School would not matter but for one cardinal consideration, which is
that they insist on asserting that, amongst those suffering from chronic
"fatigue", they are studying and helping patients with ME/CFS. There is
substantial evidence to the contrary, because they continue in their belief
that "CFS/ME" is a continuum of on-going tiredness perpetuated by
deconditioning and false illness beliefs, whereas ME/CFS is a chronic
inflammatory neuroimmune disorder in which the following have all been
demonstrated (ie. not simply hypothesised):

• evidence of disrupted biology at cell membrane level
• evidence of abnormal brain metabolism
• evidence of a reduction in grey matter
• evidence of widespread abnormal cerebral perfusion (hypoperfusion)
• evidence of central nervous system / immune dysfunction
• evidence of central nervous system inflammation and demyelination
• evidence of hypomyelination
• evidence of spatial disorientation
• evidence that ME/CFS is a complex, serious multi-system autoimmune disorder (in Belgium, the disorder has now been placed between MS and lupus)
• evidence of significant neutrophil apoptosis
• evidence that the immune system is chronically activated (eg. the CD4:CD8
ratio may be grossly elevated, as seen in multiple hypersensitivities)
• evidence that NK cell activity is impaired (ie. drastically diminished)
• evidence of hair loss in ME/CFS
• evidence that the vascular biology is abnormal, with disrupted endothelial
function
• novel evidence of significantly elevated levels of isoprostanes (a marker
for oxidative stress, which in ME/CFS rises with exercise intolerance)
• evidence of impaired proton removal from muscle during exercise
• evidence of cardiac insufficiency and that patients are in a form of heart
failure
• evidence of autonomic dysfunction (especially thermo-dysregulation;
frequency of micturition with nocturia; haemodynamic instability with labile
blood pressure; pooling of blood in the lower limbs; reduced blood volume
(with orthostatic tachycardia and orthostatic hypotension)
• evidence of respiratory dysfunction, with reduced lung function in all
parameters tested
• evidence of neuroendocrine dysfunction (notably HPA axis dysfunction)
• evidence of recovery rates for oxygen saturation that are 60% lower than
those in normal controls
• evidence that the average maximal oxygen uptake is only 15.2 ml/kg/min,
whilst for controls it was 66.6 ml/kg/min
• conclusive evidence of delayed recovery of muscles after exercise, with
ME/CFS patients reaching exhaustion more rapidly than controls, with this
failure to recover being more pronounced 24 hours after exercise (note:
there is no evidence of de-conditioning)
• evidence of mitochondrial metabolic dysfunction
• evidence of inability to sustain muscle power
• evidence of greatly increased REE (resting energy expenditure)
• evidence of enteroviral particles in muscle biopsies
• evidence of a sensitive marker of muscle inflammation (inflamed tissues
should not be exercised)
• evidence of on-going infection
• evidence that the size of the adrenal glands is reduced by up to 50% (with
reduced cortisol levels)
• evidence that up to 92% of ME/CFS patients also have irritable bowel
syndrome (80% of the immune system is located in the gut)
• evidence of abnormal gene expression (at least 35 abnormal genes --
acquired, not hereditary), specifically those that are important in energy
metabolism; there are more abnormal genes in ME/CFS than there are in cancer
• evidence of profound cognitive impairment (worse than occurs in AIDS
dementia)
• evidence of adverse reactions to medicinal drugs, especially those acting
on the central nervous system, such as anaesthetics
• evidence that symptoms fluctuate from day to day and even from hour to
hour
• there is no evidence that ME/CFS is a psychiatric or behavioural disorder.


Over a decade ago, Dr Elizabeth Dowsett, a former President of the ME
Association and a member of the Chief Medical Officer's Working Group on
CFS/ME, was clear:

"There is ample evidence that ME is primarily a neurological illness,
although non-neurological complications affecting the liver, cardiac and
skeletal muscle, endocrine and lymphoid tissues are also recognised…The
commonest causes of relapse are physical or mental over-exertion…. The
prescription of increasing exercise can only be counter-productive…. Some
20% have progressive and frequently undiagnosed degeneration of cardiac
muscle which has led, in several cases, to sudden death following exercise….
Neurological problems include exhaustion, weakness and collapse following
mental or physical exertion beyond the patient's capacity…. This arises from
metabolic damage…. Problems with balance are common in ME due to involvement
of spinal nerve tracts in the damaged brain stem…. Over 70% of ME patients
suffer from significant bone and muscle pain (a further consequence of brain
stem damage which seriously affects their mobility)…. Other patients have in
addition metabolic damage to muscle fibres…. 30% of patients with abnormal
exercise tests have evidence of persistent infection in the muscles, and
evidence of muscle infarcts…. (Patients with ME exhibit) jitter due to
incoordinated muscle fibre action, following damage to the neuromuscular
junction…. Patients with ME suffer a variety of symptoms arising from
autonomic nervous system dysfunction, including liability to a dangerous
drop in blood pressure on standing for more than a few minutes" (http://www.25megroup.org/).

It seems increasingly apparent that, no matter the calibre and quantity of
evidence that has long ago shown the Wessely School to be wrong about
ME/CFS, their 25-year old mind-set remains set in stone.

May be reposted.
 
 

UK Protest at St. Bart's

Submitted by Roisin Ryan <roisinryan1@LIVE.CO.UK>:


NOV 29 PROTEST AT BARTS


By Mindy Kitei

CFS CENTRAL

http://www.cfscentral.com



From noon to 3 p.m. on Monday, ME/CFS patients in the U.K. are staging
a virtual and onsite protest to mark the 25th anniversary of London's
St. Bartholomew's Hospital ME/CFS service.  The hospital itself,
however, is 900 years old, having been founded in 1123 by a courtier in
King Henry I's court.  The hospital's future seemed precarious 400 years
later, when King Henry VIII—the king who beheaded or divorced four of
his six wives—ordered the dissolution of the monasteries, thereby
depriving the hospital of income, until King Henry VIII reendowed Barts
shortly before his death, in 1546.

Many ME/CFS patients believe that the treatment they've received at
Barts is more appropriate for medieval times than today.


Rosie O'Grady (not her real name) is one of them. The 43-year-old
disabled lawyer hails from Ireland but lives in England with a severe
case of ME/CFS. Before she became ill in 1996, she reminisces, "I rowed
on the weekends on the Thames with a rowing club in Greenwich. I loved
traveling and my friends. My life was very full."

All that changed 14 years ago when she became ill with a flu from which
she has yet to recover.  She was an outpatient at Barts several times
from 1997 to 2005. To get government benefits in the U.K., she explains,
there's "intense pressure to show you're doing 'treatment.'  If you had
a private income, you would not go there."

O'Grady says the doctors and rehab team at Barts wanted her to become as
physically active as possible. "I was told by the physio there everyone
could do 10 percent more activity every few weeks. They told me that any
time I felt unwell [I should] go for a walk and the fresh air would wake
me up.  I completely placed my trust in them," she says, but like most
patients with ME/CFS pushing herself only made her worse.
"Some days my
power to my fingers was so weak I could not pick up a coin," she
remembers. "I was desperate to get well and would have done anything
they said."

Her ME/CFS case was so severe that she moved into a YMCA where all food
and services were provided.  "I could not even change the duvet on my
bed," she says.  "I was unable to make a cup of tea and stay awake to
drink it."  Today she is bedbound or in a wheelchair, unable to work or
remain upright for more than few minutes at a time.  She believes that
her time at Bart's contributed to her ill health.  Her sojourns there
left her physically weaker and "emotionally spun out from the lies and
double speak."

Frustrated by the care at Barts, O'Grady made an appointment with a
rheumatologist at a different hospital, who prescribed
anti-inflammatories to treat the pain in her back and neck, which proved
helpful.  When she had given her Barts doctor the same list of
rheumatologic symptoms, "he looked bored, said nothing and started
cleaning his fingernails," she recalls.  "Another doctor claimed they
didn't need to run many tests on ME/CFS patients because "they would
know the results simply by looking at the patients."

For more information on the protest:
http://www.notsonice4me.co.uk/BARTS_PROTEST.htm

For information on how to email or fax a virtual protest:
http://www.notsonice4me.co.uk/BARTS_PARTY___SEND_A_CARD.htm

A Facebook page devoted to the protest:
http://www.facebook.com/?sk=events#!/event.php?eid=156600244382628