Saturday, October 9, 2010

Advocacy – But what can I do?

 
Some low-effort ways to make a difference.

Secret Files on ME/CFS

Posted on behalf of Margaret Williams, may be reposted.

*
Another secret file on ME/CFS comes to light

Margaret Williams   8th October 2010 *


It is notable that two of the funders of the UK PACE Trial on "CFS/ME" (the
MRC and the DWP) have separate secret files on ME/CFS held at the UK
National Archives.

Firstly, the MRC files (Item reference FD 23/4553/1) containing records and
correspondence
covering the period 1988-1997, which are closed for 73 years (ie.until
January 2071):

http://tinyurl.com/yfdt8gm

And secondly, the DWP files (Piece reference BN 141/1) which have only
recently come to light. and refer to "Medical Policy" on ME/CFS, covering
the period from 1984 to 1993. They are closed for 78 years (ie. until
January 2072):

http://tinyurl.com/2w9gs8z

It is also worth recalling that members of the CMO's Working Group were
threatened with having to sign the Official Secrets Act and in June 2000
were issued with a warning that even if not covered by the Act, the status
of other documents referring to ME/CFS was "RESTRICTED", a classification
that relates to "sensitive issues" and which, if disclosed, might carry a
severe penalty.  The notification further stated: "Papers not so marked are
nevertheless considered confidential....The presumption is that such papers
would in due course be made available to the public...but that the timing
and means of release should be controlled by the authors...or by the
secretariat, as appropriate".

That the Official Secrets Act might have been invoked was confirmed by the
Parliamentary Under Secretary of State at the Department of Health, Lord
Hunt of Kings Heath, in a letter dated 23rd October 2000 and it is notable
that the reasons he gave for protecting information relating to the work of
the CMO's Working Group on ME/CFS were that it may be: "confidential
information obtained by a Crown servant  from a foreign state or
international organisation" and "information in the possession of a Crown
servant the disclosure of which would impede a criminal process".

The question arises, are there any other illnesses where information is
classified for such a long period - the customary period being 30 years, not
78 years? For example, it is known that papers relating to multiple
sclerosis are locked away for only 30 years.

What is so secret about ME/CFS that both the MRC and the DWP feel the need
to lock away documents relating to this illness?

Further information: http://tinyurl.com/32fczyu
 

* * *
Since some US activists have been discussing the possibility of a class action suit for fraud, defamation, permanently damaging our health, denial of benefits, etc., it's obvious that the 78-year period was selected as the average life span, to ensure that when these documents finally come to light there is no one left to sue and no one left to be sued.  The ultimate in CYA.
However, it's my opinion that when the truth comes out, like the Tuskegee experiment, and the recently-revealed Guatemala experiment, it will be recognized as the shameful action it was.  Even if no one from the original epidemic is around to see it, the names of people like Straus and Wessely will go down in history in infamy, not as the heroes their colleagues would like them to be.
 
Maybe I watch too much TV/movies, but how does this scenario strike you?  Last night I was watching a show where one of the "good guys" got hired by a company and proceeded to hack the company computers to dig up the smoking gun evidence for her colleagues.  Perhaps someone sympathetic to ME/CFS could get a job working at the National Archives and smuggle the contents of the secret files out?  Post them all over Wikileaks.  Bwahahahaha.
 
 

Friday, October 8, 2010

Mistakes Fibromyalgia Patients Make - fibromyalgia - Health.com

 

Is MS Fatigue the Same as Chronic Fatigue? - Multiple Sclerosis Center

 


"What Kind of Freedom?"

 
"It is an remarkable time in the history of this devastating illness.   Hopefully, recent findings will hold, and it will be a time to celebrate freedom -- with thankful hearts.    But, moving thousands of MLV-positive patients to "freedom" without life-restoring treatments and assistance is not a true freedom at all.     We always should remember the price paid for freedom by those who walked through the war.     And long after the war, we need to consider what kind of freedom is won."
 
* * *
 
Good point.  Most patients cannot afford AZT or Ampligen.  What benefit is there to find a treatment and then deny it to most patients because, through no fault of their own, they're penniless, uninsured and uninsurable? 

Cover up- ME-CFS: The Emerald City

 
"The damage is done; history will now look back and ask what the CDC did all these years while millions were sick and many died.  Patients will no longer be judged. The CDC and those who watched millions of sick and severely disabled people being mistreated, abused and neglected will one day be judged. The CDC and whoever is involved in this crime justice must be served.  The world will know the truth."
 * * *
On XMRV's first birthday, I know in my heart that we now have what we've always prayed for -- vindication.  Maybe not in our lifetimes, but eventually, the truth will be so widely known that CDC will be the butt of jokes, just as they've made *us* the butt of jokes.  ( "Dear Sirs...I am sick..." (44.5KB)
 
 
Well, we're slowly starting to get that last laugh that we've been hoping for.  Unfortunately, like the victims of the Tuskegee experiment, the initial cadre of patients may be long gone by the time it happens, but we will eventually be seen as victims and CDC as the abuser.
 
Lawyers, lawsuits, reparations ... all that sounds good, but it won't give us back the quarter-century of life that we've lost to date, and the other quarter-century taken off the end of our lives.  Moreover, for those of us who have no spouse or children as a result of this Damned Disease, our legal claims die with us, and the government is off the hook for what they've done to us because there's no one to collect the judgment on our behalf.
 
This is, unfortunately, a common government tactic -- they delay your Disability benefits, and then make you wait another 2 years after that for Medicare eligibility, in hopes that you'll die before you cost them any money.
 
Still, even if I'm looking down from a white puffy cloud when it happens, it'll be a joyous day when the CDC is finally called to task for what they've done to patients.  We will win in the end.
 
 
 
 

To Suffering, Add Anger

CFS: To Suffering, Add Anger
By Llewellyn King
Published October 8, 2010 – 1:58 pm

http://whchronicle.com/2010/10/cfs-to-suffering-add-anger/


I've been walking on the sad side. My mailbox is jammed with dozens of
heartrending e-mails from sufferers of Chronic Fatigue Syndrome (CFS);
a terrible disease that is little understood, little researched and
hard to diagnose.

Chronic Fatigue Syndrome, which is known as Myalgic Encephalomyelitis
in many parts of the world, mostly strikes people in their thirties
and forties. The disease begins with flu-like symptoms which are often
a precursor to a full collapse, often after exercise.

The disease largely disables the immune system; and leads to joint and
muscle pain, cognitive dissonance, memory loss, dysphasia and problems
with simple math. Sufferers are often confined to bed for months,
functioning at a substantially reduced capacity, where the simplest
tasks become monumental.

CFS-afflicted authors describe taking years to finish projects that
should have taken months. These include Hillary Johnson, whose book
"Osler's Web" is about CFS; Laura Hillenbrand, who wrote the
bestseller "Sea Biscuit" while struggling with the disease; and
Deborah Waroff, who is writing a book about the Jewish hero Sholom
Schwartzbard, but who has found the task dragging on for years,
working as she can between severe periods of disability, confined to
bed.

The human suffering of both the afflicted and those close to them is
incalculable in its awful impact. One woman who e-mailed me wrote:
"When I became totally disabled seven years ago, because I had not
announced my illness previously, nearly everyone I knew figured the
illness was in my head. They were aided and abetted with this sort of
reasoning based on how the majority of the medical establishment and
media had treated CFS. Like many with CFS, I lost all of my companions
and my spouse."

One of the most hopeful of recent discoveries is also generating a
collateral fear. The retrovirus XMRV has been found to be present in
CFS patients and has led them to worry about transmitting the disease
to family members. One woman who e-mailed me from Britain wrote that
her husband contracted the disease after years of nursing her. Who,
she asked, will look after them now?

A sufferer in Maryland wrote to me that she worries about her family.
She and her husband decided to have a child. They were blessed with
triplets – and the return of the mother's disease. Now she worries for
her husband and the three babies.

A man—one-third of victims are male, although the National Institutes
of Health treats CFS as a woman's disease–sums up the anger in the
community towards the political establishment, and particularly the
Centers for Disease Control which changed the name from Myalgic
Encephalomyelitis, in a controversial action.

He wrote: "Washington didn't so much forget – they were never told.
The CDC swept it under the carpet, despite the fact that their main
raison d'ĂȘtre is to investigate and sort epidemics of new diseases
before they take hold. Now, because of the CDC's wrongdoings, there
are more than 1 million people affected in the USA and possibly 17
million worldwide. Most of these people are too sick to stand up for
themselves, to fight back."

Breaking down the e-mails, I find these commonalities:

· Anger at the CDC and, to a lesser extent, the National Institutes of
Health and government in general.

· Tremendous suffering and horrendous problems with affording
treatment; frequent misdiagnosis, as doctors use a "dustbin" approach
that discards all the possibilities until they get to CFS.

· Anger at the media and others for not taking CFS seriously enough.

· The knowledge, with a cure rate of between 4 and 8 percent, that
they are awaiting the inevitable in huge discomfort. They are on
medical death row.

· Sufferers describing themselves as "living corpses." Alone with
their suffering, many commit suicide.

I'm not a medical writer. Writing about medicine has never interested
me. But in a career of writing for newspapers, spanning more than 50
years, I've never received so much mail that has so consumed the
thought process and torn at the heart.

There is a ghastly disease out there that cries out to be taken
seriously, to get proper attention in the medical world, and to be
prioritized along with the other big diseases claiming research
dollars.
 


 

“How the Medical Community Treats Patients with Invisible Illnesses"

 

Survey Gives Patients with "Invisible" Illnesses a Chance to Speak Out

Survey Gives Patients with "Invisible" Illnesses a Chance to Speak Out
About How They Are Treated

Survey Gives Patients with "Invisible" Illnesses a Chance to Speak Out
About How They Are Treated Patients who suffer with chronic fatigue,
fibromyalgia, pelvic pain, TMJ, migraines, chemical sensitivities, and
more can speak out in an anonymous survey about how the medical
community treats them.

FOR IMMEDIATE RELEASE

PRLog (Press Release) – Oct 02, 2010 – Patients with "invisible"
illnesses, such as chronic fatigue syndrome, fibromyalgia, vulvodynia,
interstitial cystitis, migraine, irritable bowel syndrome, chronic
pelvic pain, and a host of other pain and inflammatory disorders have
tremendous difficulty finding the help and treatment they need; even
finding a diagnosis is a challenge. Doctors often dismiss their
symptoms as being imaginary, which further demoralizes an already
suffering patient.

Now, as part of the research for a new book on how the medical
community treats patients with "invisible" illnesses, patients  can
express their feelings and speak out through an anonymous patient
survey. All respondents will receive a downloadable pain trigger
journal.

According to Susan Bilheimer, author and survey creator, "It's time
that the medical community recognized that patients with illnesses
that are chronic and not easily diagnosed are not problem patients,
but patients with a problem. Just because you can't see pain and
inflammation doesn't mean they aren't real. There are certainly
exceptional doctors who understand chronic illness. But for those who
don't, I'm hoping to send a wake-up call that it's no longer
acceptable to dismiss and mistreat suffering patients."

So far, over 1,100 responses have been received. A number of
organizations, such as the National Vulvodynia Association
(www.nva.org) and the Interstitial Cystitis Association
(www.ichelp.org), have encouraged their members to take part.

To take the survey, go to http://www.surveymonkey.com/s/TDWVHDW

This survey is associated with the Invisible Illness Advocate
(www.InvisibleIllnessAdvocate.com) and Secret Suffering
(www.SecretSuffering.com) websites (Susan Bilheimer, founder, and
Robert J. Echenberg, MD, medical advisor).


About Susan Bilheimer: Susan Bilheimer is a writer, radio host, and
speaker on women's health issues. She is the co-author of "Secret
Suffering: How Women's Sexual and Pelvic Pain Affects Their
Relationships" with Robert J. Echenberg, MD. Her own journey with
perimenopause, pelvic pain, and invisible illnesses led to development
of websites and books to educate and empower patients. For more
information, go to www.SecretSuffering.com or
www.InvisibleIllnessAdvocate.com.
 
* * *
For every patient who's been dissed or had physical symptoms ignored in favor of amateur psychology, let's give the medical profession an earful!

HAPPY ANNIVERSARY!

 
A year ago today, the news broke about XMRV.
 
What's happened in the interim?  A lot if you're talking about WPI.  Not much if you're talking about CDC.  They're still desperately clinging to the psych model favored by Straus/Reeves, even in the face of replicated research that XMRV exists.
 
For today, let's focus on the good news.  A toast to Annette and Harvey!


The Apprentice: ME/CFS

*The Apprentice : ME Carer Style*
*Greg Crowhurst Oct 8 2010*
(permission to repost)

It 's  a format that is screened all over the word. A TV show where a group
of incredibly ambitious  20 /30 somethings try to convince a wealthy
business man to take them on, as an "apprentice"  for a 6 figure salary.

I wonder what the show might be like from an Severe ME Carer perspective :

" I am unique." : I will work for nothing, 24 hours a day, seven days a
week.

"I am a go-getter." : I will take on the full force of the Global Medical
Insurance Industry that is doing all it can to deny you recognition and
treatment .

"I make things happen." : I will spend a whole day, helping you get from bed
to chair.

"I am not all talk... I can manage a team of people, total strangers even,
because I am feisty and have attitude." : I will find a way to work with
other stressed-out and incredibly ill people with ME , and other Carers, in
order to make  things happen for you, like a doctor's visit.

"Caring  is the new rock 'n' roll and I'm Elvis Presley" : I will never
cease, even after decades, to try and think to ways to ease your pain, to
bring you some comfort, to search for a things that might help you get
through another day.

"For me caring  is about hard-work, attention to detail, being willing to
make mistakes and learning from these mistakes." : I will get it wrong,
often, because you are so sound sensitive, so touch, so light sensitive, so
tormented, so close to screaming in agony, even so  I will try and learn the
best way to flow with your tiny scrap of energy.

"I knew I would be selected, not to sound big-headed... I've succeeded in
the companies I've worked for because I work hard and I'm honest." : I will
use  all my life experience, professionalism, learning , every ounce of
creativity, every single talent I possess, to deal with , to cope with, to
help you get through, second by  second , the unspeakable , never-ending
torment that you are in.

"I'm at the top of my game." : I love you more than ever, I have grown
immeasurably as a person, I have come to learn what is truly important, I
live now in six-figure moments.
 
* * *
Kudos to Greg, and to all the other healthy spouses who've stuck around.

Thursday, October 7, 2010

Nevada Business Visionaries

 

Annette Whittemore


Founder & President

Whittemore Peterson Institute for Neuro-Immune Disease (WPI)


    After her daughter suffered for several years from chronic fatigue syndrome, Annette Whittemore got busy. She created a research program and institute dedicated to uncovering the causes of and developing effective treatments for neuroimmune diseases, such as myalgic encephalomyelitis/chronic fatigue syndrome, fibromyalgia, Gulf War illness, atypical multiple sclerosis and autism.

    She created a national network of researchers, doctors and patients along with an advocacy program that resulted in federal support for the institute. She established a partnership between the Whittemore Family Foundation, private donors, the State of Nevada and the University of Nevada, Reno to fund a $77 million dollar research facility at UNR's School of Medicine. In fact, Whittemore now is moving into WPI's recently completed clinical patient facilities and research laboratories at UNR.

    She speaks often at international medical conferences and workshops and now is a voice for the neuroimmune community before federal and state legislatures.


 

:)

After years of trying to find a cleaner who actually cleans, doesn't show up with a lot of excuses about why she can't or won't do the things I need done, I found one.  I've heard a colleague raving about her for years, and we finally succeeded in convincing her that she wants to drive an hour each way to clean for me.
 
The disaster zone is now looking like a kitchen again.  All those things that prior cleaners were instructed to put away and didn't, have been.  The floor's been scrubbed and is now white again.  She still needs to clean the oven and do a few other small tasks when she comes next week, but I'm impressed with how much she's gotten done in a few hours.  Would've taken me months (if not years) and left me in intense pain.  Zip, zip, and she's got it done, and I know I can go relax while she's here instead of standing over her, because she comes with a reference I trust, who will get on her case if she doesn't do the work to my satisfaction.
 
Life has just gotten a whole lot easier.
 
I can now stop wasting energy undoing the damage left by people who were paid to do something very different from what they actually did, and go back to doing only those chores that I can manage easily. 
 
 


Learning to Live With CFS: Supplements for CFS

 

Don't let's use our inside voices -- say it loud, say it proud!



 

Wednesday, October 6, 2010

Search of: chronic fatigue syndrome - List Results - ClinicalTrials.gov

 

Craigslist action report

Khaly suggests googling ME/CFS and Craigslist to see the impact of our little ActUp yesterday.  I just tried it and got

Web Results 1 - 10 of about 4,470

Good work, gang!
 
I've been mentioning CFS in comments to articles on mainstream media websites.  I can usually find some way of tying it into the story.  E.g., there was an article about happiness, that if you have nothing else, be thankful for your health.  Well, I don't even have that much, perfect tie-in.
 

Tuesday, October 5, 2010

11 years later.. still BS is on the CFSAC Agenda !!

 

Station: Cable News Network (CNN)

Date: October 24, 1999 Programme:

CNN & Time  URL: http://cnn.com/TRANSCRIPTS/impc.html

http://cnn.com/CNNPromos/cnntime

http://cnn.com/TRANSCRIPTS/9910/24/impc.00.html (text)

SICK AND TIRED--------------

ANNOUNCER: CNN & TIME. Tonight, "Sick and Tired." ...

PETERSON: About 30 percent of them are still severely disabled. The remainder have had substantial or at least partial improvements.

KAGAN: And how many are completely recovered?

PETERSON: None.

 

Written Testimony of a MD/MPH/person with CFS to the CFSAC

 
 
Dear Sir/ Madam,

Thank you for attending this CFSAC meeting and for the opportunity to address you with my concerns.

I write to you as a physician, former medical researcher, and person who has been disabled by Chronic Fatigue Syndrome. I am encouraged that some progress has been made since last year and would like to thank Dr. Harvey Alter's group for their study; Dr. Thomas Frieden for looking for a new CDC leader experienced in CFS; Dr. Francis Collins for personally attending the recent NIH XMRV workshop; Dr. Michael Gottesman for meeting with people affected by CFS and their families; and the numerous behind-the-scenes officials/ staff for organizing the XMRV workshop and the CFSAC meetings.
However there remains much to be done.


1. Increase collaboration with experienced non-governmental CFS
researchers/ clinicians and patient groups. The recent discrepancies in XMRV findings between various research groups highlights not only the importance of laboratory techniques but also how subjects are selected. The studies with positive results used clinicians (Dr. Dan Peterson, Dr. Anthony Komaroff, Dr. David Bell, Dr. Paul Cheney) who had decades of experience diagnosing CFS to select their subjects. The negative studies generally did not. Since CFS is an ill-defined illness, it would make sense to involve experienced clinicians in subject selection, as is frequently done in studies of other medical conditions, rather than using community-based random digit dialing, as the CDC did, to select subjects. I understand the need for community-based studies but it needs to be supplemented by clinic-based studies.

Similarly, patient have the biggest stake in this research, their lives, and many are eager to volunteer for studies or help out in any way they can.
Although patients and their families may seem to be a nuisance at times, realize that their true goal is not to make your life difficult but to get well. It's easy to lose sight of this - I know, I've been on the opposite side of the stethoscope. Tell us how we can help you work faster/ better and we will do what we can.


2. Perform a thorough review of the CFS research literature and
incorporate past findings into current materials and future research. In a recent meeting with Dr. Michael Gottesman of the NIH, people asked Dr. Gottesman why this medical condition had been ignored for the last 2 decades. Dr. Gottesman replied that it was due to a lack of concrete scientific, clinical and medical findings. [1] This is not true but I am not surprised by Dr. Gottesman's statement as it is representative of the mainstream medical and scientific community's ignorance. I might have said the same statement before I became ill.

There have been about 5,000 papers over the last 25 years documenting physiological abnormalities in multiple organ systems, including orthostatic intolerance, dysregulated immune functioning, aerobic metabolism issues, and abnormal SPECT/ fMRI scans. [2, 3, 4, 5] There are numerous past papers on the epidemiology of CFS. [6] However, little of this information, especially non-CDC study findings, has been discussed in CDC research papers or materials presented to the public within the last decade.

For example, materials directed towards health care professionals on the CDC website do not mention that outbreaks of CFS have been observed for many decades or that up to 80% of people who develop CFS start their illness with a flu-like illness. [7] Certainly, we do not what these observations mean yet but it might help clinicians diagnosis patients more accurately and as early as possible. Clinicians might even think to ask patients if they have family members/ contacts with CFS, thereby adding to the knowledge base
about the epidemiology of CFS. Healthcare professionals are no strangers
to medical controversies but rather than discussing these topics and letting professionals make up their own minds these topics are not mentioned at all on the website.

In October of 2009, CFSAC recommended that AHRQ complete a review of CFS for an NIH State of the Knowledge Workshop. [8] I hope this is still being considered, that AHRQ does a thorough job, and that the CDC re-evaluates what they present
as they are an influential agency. I have found much useful information
from reviewing
studies published by Dr. Leonard Jason, the International Association for CFS/ME, and the Journal of Chronic Fatigue Syndrome. Articles from these three parties are frequently not catalogued on Pubmed. Federal agency representative should also consider participating in the annual international conferences sponsored by various CFS research groups. Let's not re-invent the wheel here: use every bit of information available to solve this illness.


3. Investigate the long-term effects of CFS. Early studies examined
whether CFS increased the risk of lymphoma [9]. Jason found, in a small study, that people with CFS died of cancer or heart failure at a younger age than people in the general population. [10] Young people, labeled as "crazy" and ill for years, have died with unexplained findings at autopsy including inflammation of the spinal dorsal root ganglions [11] and non-acute viral myocarditis [12].

The full recovery rate for CFS is less than 10% [13]; a 2009 survey by the CFIDS Association of America with 1,100 respondents showed that a large percentage of individuals had been sick for over 10 years. [14]. A few studies have reported on CFS outbreak subjects 10 years later but they have relied primarily on written questionnaires or subject interviews rather than medical record review or interview with the subjects' physicians.
[15, 16] Subjective methods without confirmation may lead to an overestimation of improvement/ recovery and denial / downplaying of ongoing/ new symptoms. [17] In addition, CFS sometimes has a relapsing-remitting course such that many who believe that they have fully recovered find their symptoms returning years later.

Even though many questions surround CFS, do not let it delay research into this important topic. People are living with and dying of complications as we wait.
If more were known about long-term effects, patients and clinicians might know what to watch out for and perhaps existing treatments could be used to prevent or ameliorate complications.



4. Establish 5 Centers of Excellence for CFS. This has been requested as a top priority by CFSAC to DHHS since at least September 2004. [18] Centers of Excellence or a similar structure are needed to carry out coordinated multi-disciplinary research, clinical care, and education of health care professionals. There are already several institutions carrying out CFS research that would be superb candidates, including the Whittemore-Peterson Institute and former CFS Cooperative Research Centers like the University of Miami. Furthermore, if MLV-related viruses turn out to play a major role in this illness, already established HIV Centers of Excellence might be adapted to include CFS research as well.

Encouragement should also be given to young or new investigators interested in CFS. I have heard from research/ clinical colleagues that they are reluctant to invest their time/ energy due to lack of funding and the still-held view by more senior colleagues that CFS is a psychological illness not worthy of scientific investigation. Other than establishing Centers and waiting for investigator-initiated applications, NIH should consider issuing a new Request for Application (RFA) for CFS, especially in light of renewed interest by researchers with the recent XMRV findings.


5. Look into adverse effects of graded exercise therapy (GET).
Information about activity pacing and graded exercise therapy has been modified for the better on the CDC website over the last year. However, the CDC maintains a link to the United Kingdom's National Health Service program on GET. [19] Over the last decade, 34-82% of CFS sufferers surveyed in the UK have reported that GET has worsened their health, not improved it. [20] This is not unexpected given the physiological abnormalities that have been detected with exercise. [21] Furthermore, adverse effects of GET in studies have not been tracked or reported as rigorously as they should be. [22] While GET programs in the US may be different from those in other countries, this information should be taken into account when writing clinical guidelines.


6. Deliver CFSAC recommendations to Secretary Sibelius and ask for a
written response to the recommendations. I have seen CFSAC video casts where members have noted that there has been no response from DHHS on many of their recommendations. It is unclear even whether the recommendations have been read. This is an unacceptable situation. I do not expect DHHS to agree with all CFSAC recommendations but I do expect Secretary Sibelius or her representative (Dr. Howard Koh) to read through the recommendations and tell us yes, no, maybe, we need more information to make a decision, etc.


Patients understand that CFS is complex and that answers will not come easily but we want an honest effort and an appropriate response from our
government. Please do your best! I want to get well and return to my
work and my life. Thank you for your time and attention.

Sincerely, MD/ MPH/ person with CFS



REFERENCES:

1. Solomon R. Summary of Sept 7, 2010, meeting with NIH officials and
CFS patients and families.
http://www.forums.aboutmecfs.org/sho...nts-and-families-deliver-strong-message-to-NIH-officials-on-Sept.-7-2010. (Accessed
9/15/2010.)

2. Carruthers BM, van de Sande MI. Myalgic encephalomyelitis/ chronic
fatigue syndrome: a clinical case definition and guidelines for practitioners. An overview of the Canadian Consensus documents. 2005.
http://www.cfids-cab.org/MESA/me_overview.pdf . (Accessed 9/15/10.)

3. Cook DB, O'Connor PJ, Lange G, et al. Functional neuroimaging
correlates of mental fatigue induced by cognition among chronic fatigue syndrome patients and controls. Neuroimage. 2007 May 15;36(1):108-22.

4. Van Ness JM, Snell CR, Stevens SR. Diminished Cardiopulmonary
Capacity
During Post-Exertional Malaise. Journal of Chronic Fatigue Syndrome. 2006;
14(2): 77-85.

5. Kennedy G, Khan F, Hill A, et al. Biochemical and vascular aspects
of pediatric chronic fatigue syndrome. Arch Pediatr Adolesc Med.
2010;164(9):817-823.

6. Briggs NC, Levine PH. A comparative review of systemic and
neurological
symptomatology in 12 outbreaks collectively described as chronic fatigue syndrome, epidemic neuromyasthenia, and myalgic encephalomyelitis. Clinical Infectious Diseases. 1994 18(1):, S32-S42.

7. A.D.A.M. Chronic fatigue syndrome.
http://adam.about.com/reports/Chroni...#adamHeading_5 .
(Accessed 9/15/10)

8. CFSAC. Committee recommendations, October 29-30, 2009.
http://www.hhs.gov/advcomcfs/recomme.../10302009.html . (Accessed
9/15/2010)

9. Levine PH, Fears TR, Cummings P, et al. Cancer and a fatiguing
illness in Northern Nevada--a causal hypothesis. Ann Epidemiol. 1998 May;8(4):245-9.

10. Jason LA, Corradi K, Gress, et al. Causes of death among patients
with chronic
fatigue syndrome. Health Care for Women International. 2006; 27:615-626.

11. Hooper R. First official UK death from chronic fatigue syndrome.
June 2006.
http://www.newscientist.com/article/...h-from-chronic-fatigue-syndrome-.html . (Accessed 9/15/10)

12. Schweitzer, M. Testimony before CFSAC September 2005.
http://www.hhs.gov/advcomcfs/meeting...50912_min.html .
(Accessed 9/15/2010)

13. Cairns R, Hotopf M. A systematic review describing the prognosis
of chronic fatigue syndrome. Occup Med (Lond). 2005; 55(1):20-31.

14. CFIDS Association of America patient survey April 2009.

15. Levine PH, Snow PG, Ranum BA, et al. Epidemic neuromyasthenia and
chronic fatigue syndrome in west Otago, New Zealand. A 10-year follow-up.
Arch Intern Med. 1997 Apr 14;157(7):750-4.

16. Strickland PS, Levine PH, Peterson DL, et al. Neuromyasthenia and
chronic fatigue syndrome in Northern Nevada/ California: a ten-year follow-up of an outbreak.
Journal of Chronic Fatigue Syndrome. 2001; 9 (3/4): 3-14.

17. Bell D. Fatigue with and without orthostatic tolerance.
Lyndonville News. May 2010. http://www.davidsbell.com/LynNewsV7N1.htm.
(Accessed 9/15/2010.)

18. CFSAC. Committee recommendations. September 2004.
http://www.hhs.gov/advcomcfs/recomme.../09272004.html . (Accessed
9/15/2010.)

19. Centers for Disease Control and Prevention. CFS Toolkit - graded
exercise therapy.
July 2010. http://www.cdc.gov/cfs/toolkit/get.html . (Accessed 9/15/2010)

20. Kindlon T. Adverse reactions to graded exercise therapy. May 2009.
http://sacfs.asn.au/news/2009/09/09_...ons_to_get.htm .
(Accessed 9/15/2010)

21. Twisk FN, Maes M. A review on cognitive behavorial therapy (CBT)
and graded exercise therapy (GET) in myalgic encephalomyelitis (ME) / chronic fatigue syndrome (CFS): CBT/GET is not only ineffective and not evidence-based, but also potentially harmful for many patients with ME/CFS.
Neuro Endocrinol Lett. 2009;30(3):284-99.

22. Larun L, McGuire H, Edmonds M, Odgaard-Jensen J, Price JR. Exercise
therapy for chronic fatigue syndrome. Cochrane Database of Systematic Reviews 2009, Issue 1.
(Updated from 2003, Issue 4.)
 
* * *
I was one of those who thought they'd recovered.  I went back to work full-time for 12 years and then got hit with a relapse that (to date) has lasted almost 11 years.
 
Yes, in that 12 years I had periodic "mini-relapses" where I could work full-time only by spending all my non-work hours resting, but didn't think too much of it because they only lasted a few weeks and I was still able to work.  It was not until I relapsed badly enough to lose my job that I realized how limited my life had been -- I could go out and do things without considering whether I could go to work the next day.  Things that other people would take for granted, like running an errand at the far end of town or going to the mall/movies.  It was not a matter of "I don't have time to do this because I work full-time" but that I had the time on a weekend, but couldn't risk expending the energy and then not being able to make it through the workweek because I might be running on fumes by Thursday.
 
The good doctor makes an excellent point that we need to be sure research is done on the right patients.  People who have what I have do not respond to anti-depressants; people who are "fatigued" because they are depressed, do.  People who are more correctly classed as psych patients do not complain of the neurological symptoms, immune dysfunction symptoms, post-exertional relapse symptoms. 
 
When some researchers say that they have produced vast improvement in "CFS" patients with exercise, the question always arises whether these are depressed people (who'll perk up with exercise-induced endorphins) or patients who have what I have (who'll relapse after exercising).  So many of our patients are former athletes, people who love to move, and who've learned from experience that going back to the exercise they love makes them sicker.  These are not couch potatoes who hate exercise and will claim it makes them sicker so they can stop doing it -- these are people who want nothing more than to return to running, dancing, soccer, baseball....
 
 
 

Written testimony of a MD/ MPH/ person with CFS to the CFSAC

Here's a link to the written testimony of a MD/ MPH/ person with CFS to the
CFSAC:
http://bit.ly/9NNQ4N   i.e.
http://www.forums.aboutmecfs.org/showthread.php?7939-Written-Testimony-of-a-MD-MPH-person-with-CFS-to-the-CFSAC  


They added:
------------
Please continue to send your letters to CFSAC at cfsac@hhs.gov  cfsac @
hhs.gov. Although the deadline has passed to put the information in the
packet to government officials, CFSAC will continue to accept letters until
the Oct. 12 meetings.
These letters will be available to meeting attendees on site and later on
CFSAC's website. [example:
http://www.hhs.gov/advcomcfs/meetings/presentations/05102010.html

OR snail mail/ call/ fax:

Chronic Fatigue Syndrome Advisory Committee (CFSAC) Office of the Assistant
Secretary for Health U.S. Department of Health and Human Services Hubert H.
Humphrey Building, Room 712E 200 Independence Avenue SW.
Washington, DC 20201
(202) 690-7650 (Voice)
(202) 401-4005 (FAX)

Thanks.
 

Monday, October 4, 2010

Accommodation Ideas

 

A to Z of Disabilities and Accommodations

 
 

Job Searching with a Disability

 
 
"In general, people with disabilities have difficulty finding jobs, with less than one in five (19.2%) in the labor force compared to 64.5 percent participation among able-bodied folks."

* * *
I've said it before and I'll say it again -- when a person works right up until death, it is not necessarily the person who deserves kudos, but their employer.  Many of us who are unemployed would LOVE to be working, but were let go by employers when we could no longer produce at 100%.
 
We want to work, we have the training to work, but as soon as we say "ADA Accommodations", the employer comes up with a reason not to hire us.
 
In my case, I'm medically prohibited from driving; the first thing that comes to most people's mind is "epilepsy", though in my case it's simple fainting spells -- no danger of injury to myself if I am able to lie down on the floor when I feel one coming on. 
 
When I admitted to one potential employer that I could not perform the less than 1% of the job relating to driving, and offered to pay from my own pocket for any messenger service, they chose not to hire me.  Since driving was not a major job function, I could've sued, so they changed the job description, adding a skill that another candidate had and I didn't.  The legal community is a small world, it wasn't too long till I had reason to talk to the successful candidate, who admitted that she had not yet had reason to use that supposedly crucial skill, and didn't foresee using it in the future.  But by adding it to the job description, they were no longer discriminating against me due to the disability.  Problem solved. 
 

Antipsychotic Drugs - Side Effects May Include Lawsuits - NYTimes

 

"The new generation of antipsychotics has also become the single biggest target of the False Claims Act, a federal law once largely aimed at fraud among military contractors. Every major company selling the drugs — Bristol-Myers Squibb, Eli Lilly, Pfizer, AstraZeneca and Johnson & Johnson — has either settled recent government cases for hundreds of millions of dollars or is currently under investigation for possible health care fraud."


Fibro Blog

Dear Friends
We had a recent post on one of our blogs which dealt with Fibromyalgia
http://www.patient-experience.com/index.php/fibromyalgia-blog/#jsid-1285861548-703
The poster was interested in setting up a support group for fellow patients
It would be really great if you could drop into the blog and add any advice, suggestions or comments about the best ways patients can support each other.
Thanks for your help in advance
Belinda
The Patients Voice
 

Sunday, October 3, 2010

Tuskegee Two Discovered - OSLERSWEB.COM

"Has Tuskegee Three has been underway at the Centers for Disease Control since 1985, when investigators abandoned patients in an outbreak in Incline Village, Nevada, calling them hysterical, "not normal Americans," and suggesting to the mainstream press and other scientists in the federal health system that these patients were mentally ill? By failing to investigate a malady that by all appearances was infectious--an act that appears to have allowed the infection to spread to millions of people--did CDC once more step into the breach of grossly unethical conduct?"
 
 
* * *
There has been a conspiracy theory going around for a while that CFS was a bioweapons experiment gone wrong.  I'm not entirely sure I buy into it, but I do admit that it sounds more plausible than most conspiracy theories.