Friday, March 4, 2011

Assistive Devices: An Emotional and Physical Journey | But You Dont

WSJ & NYT Compete for best CFS coverage!!! :)

Is this great, or what?

Overlapping Pain Conditions: Women in Pain Need More

  • Women are treated less aggressively than men for pain and their reports of pain are often taken less seriously by healthcare professionals than are men's.
  • Health care professionals are more likely to dismiss women's pain reports as emotional, psychological, or oversensitive and therefore not "real," leading to women's more frequent mental health diagnoses.
  • These conditions result in a staggering financial burden, estimated at $80 billion a year in direct and indirect health care costs.
  • The funds allocated to researching these conditions through the National Institutes of Health are woefully inadequate, at just $1.33 per year for every affected woman. 

Pain in the Workplace | NAIDW

A study found 89% of employees would rather work than stay home because of chronic pain.  Shoots down the prevailing theory that those of us with chronic pain conditions are just making excuses because we're too lazy to work.
"If you're worried about missing work because of chronic pain, or you're worried about telling your employer about your situation, it is important to note that there are really only two occasions when you must absolutely inform your boss: if you are requesting leave through the Family Medical Leave Act, or if you are requesting special accommodations under the American with Disabilities Act. Otherwise, you are not legally obligated to inform your boss of this personal issue. However, should your chronic pain start to impact work performance and attendance, it might be wise to discuss things with management."
Note that you can't invoke ADA after the fact -- you have to tell your boss that you're disabled and covered by ADA before you're fired.

National Association of Injured & Disabled Workers


"I tell you, they're not listening"

Dr. Oz's March 3 show (replayed in many cities the next morning), dealt with
Dr. Kimberly Manning admits "I tell you, they're not listening".  Doctors are taught (in some medical schools) to do "teach back" -- have the patient tell you what they think you said so you can verify they understood the prescription.  In my case, it would've been helpful to have the doctor do "teach back", so I could correct their misperceptions about when and why I stopped working, what I'd told them my existing diagnosis was, etc.
Something on the order of 80% of malpractice lawsuits are based on avoidable error.  And the biggest error is that the doctor didn't listen to what the patient actually said.
When I said "I was diagnosed by a virologist" how on earth did the doctor get from that "I have lifelong depression, not a physical illness"?!  Because he wasn't listening!!!!!!  He heard what he wanted to hear to support the diagnosis he wanted to make.  It made more sense to him to hear that my symptoms started when I got depressed after losing my job than to hear what I actually said, that my symptoms were the reason I lost my job.
Another doctor chose to hear that I stopped working in 1988 when I got my diagnosis, because that better fit into his bias than the truth, that I worked till 2000.  I was not a pampered housewife looking for alimony because I didn't like being back in the work force, I was a careerwoman who was ticked off that everyone wanted to accuse me of not wanting to work rather than doing what it took to get me back to work.
I didn't find these false statements in the records until after Disability had been denied based on them.  HIPAA does say you can request that errors in medical records be changed, but it's at the doctor's discretion.  If he wants to insist that he wrote down what you said and now you're changing your story, there's not a thing you can do about it.
If I'd done "teach back" -- tell me what you think I said about my symptoms, when they started, why I stopped working, etc. -- maybe this would've been avoided because I could've corrected their misperceptions.  Or maybe not, because these were intentional misunderstandings, where they turned things around in their heads till they made sense in light of their prejudices that all divorced women are depressed.
As a matter of self-defense, every time you see a doctor, make a request to promptly see what was written in the medical records at that appointment.  Then put it in writing "your records state that I stopped working in 1988.  In fact, I worked for Dewey, Cheatum and Howe until 2000, when I was fired because my symptoms were so severe that I could no longer do the work.  Please correct this error."
If the doctor insists on diagnosing depression, call him on it.  There are a number of symptoms that appear in CFS but not in depression, so ask point-blank, "What about this rash?  The fever?  The fainting spells? Are those symptoms of depression?"  Make him explain why he's disregarding objective symptoms in order to make a diagnosis that doesn't fit.
And, yes, I know, when you're deathly ill, just getting to the doctor's office can be more than you're really capable of, without standing up for yourself, too.  If at all possible, have a friend or relative accompany you to make sure the doctor's getting things right.  Dr. Oz also suggests Guardian Nurses nurse-advocates or some other patient advocate if you can't get a friend to take time off work.

Doctors Need to Know -- Write Letters to Doctors This Week!

Starting March 1, ME/CFS patients are educating physicians around the world of  retrovirus discoveries (XMRV) as well as other biological abnormalities found with this disease. With medical schools and government agencies not fulfilling this role, like so many other matters, patients are doing it themselves.

The campaign will last until March 15. Each patient is sending five letters and scientific documents to five physicians in their local area.

These include:

•National Institutes of Health announcement of their retrovirus findings.

•Press release announcing unique proteins are found in spinal fluid of ME/CFS patients.

•National Cancer Institute announcement of the original study, with Whittemore Peterson Institute and Cleveland Clinic, that showed high level of retrovirus in ME/CFS patients.

•List of top ten biological discoveries in ME/CFS patients, according to Dr. Anthony Komaroff, a professor at Harvard Medical School.

The campaign was organized by PANDORA and CFS Solutions of West Michigan. In January 2011, MCWPA did a patient survey and participating in this project was in the top three choices.  Patients were given suggestions and instructions in the Patient Discussion board.

Overlapping Pain Conditions: Women in Pain Need More

"For many patients, it takes multiple health care provider visits over many months or years before they are diagnosed with these conditions. Along the way, some are misdiagnosed, and may receive inappropriate, ineffective, or even harmful treatments. If her symptoms persist, it's not unusual for a woman to be told that the problem must be psychological or stress-related."

Happy Anniversary to me!

On this date, 23 years ago, I got my diagnosis.  I was assured that some great minds were working on it.
Yet still there's no cure or even a viable treatment.  Why not? 
CDC knew more about SARS in 8 days than they know about CFS in a quarter-century.  Why?
Next February will mark the silver anniversary of me getting the virus.  I'd like to celebrate with a cure, but I'm not holding my breath.

Thursday, March 3, 2011

Chronix Biomedical and Hemispherx announce joint filing for a patent on a blood

Chronix Biomedical and Hemispherx announce joint filing for a patent on a
blood test for CFS based on changes to DNA. Press release:

News & Resources

PACE trial results are out: ME is caused by an oncogenic virus

"So, we now know that ME is caused by a virus, with an incubation time of about 1 to 3 weeks. It's also a stealth virus, in the way that routine testing by your doctor won't find anything. A bit like doing routine testing in someone who has HIV. If you don't do the right test, you won't get the right answer."
Thank you, Dr. Speedy!

Can you imagine cancer away? -

Dr. Marcia Angell, former editor-in-chief of The New England Journal of Medicine, calls the mind-body connection a "new religion" that encourages false hope.

"There is something so biologically implausible that your attitude is going to cure a disease," says Angell, a senior lecturer in social medicine at Harvard Medical School. "There's a tremendous arrogance to imagine that your mind is all that powerful."

* * *

Here's to all the PWCs who have been told they can cure themselves by thinking happy thoughts. 

When I was in denial about the disease, I got sicker.  Telling myself that I was going to go to the office and be capable of putting in a full day's work didn't make it possible.  At the end, it was almost impossible to even get to the office, much less accomplish anything while I was there, no matter how much I told myself that I could power through the problem.








For sample pages of the report go to



A 400-page report, What do patients think of doctors?, published in early-March 2011 by UK research organisation PatientView, finds that over half (53%) of the 2,500 respondent patient groups think patients believe doctors are standing in the way of their receipt of the correct diagnosis, treatment and and/or support—and are making patients 'fight the system' to obtain the care they need.


The situation is at its worst in five countries—Canada, Germany, Italy, New Zealand and the UK—where 60% or more of patient groups say that health professionals need to improve their relationships with patients by not making patients fight the system for their medical needs. 70% of patient groups representing the interests of patients with gastrointestinal problems, 60% representing the interests of patients with multiple sclerosis, and 60% rare diseases, feel that health professionals need to stop forcing patients to 'fight the system' to get the care they need.


Poor doctor-patient relationships have a negative effect on patient health

What do patients think of doctors? focuses on the current state of doctor-patient relationships, and offers numerous insights into how they can be improved. The report finds that less than a third of groups representing patients believe GPs and consultants remain traditional and patriarchal in their attitudes to patients. On the other hand, only 15% believe that doctors treat patients as equals (and act on that belief)—the rest believe that the situation varies from doctor to doctor, or that doctors may intend to take a partnering role, but fail to live up to it. Relationships between doctors and patients are undoubtedly in need of considerable improvement, especially in some of the less well-performing countries [see charts in sample pages at weblink above].


The state of doctor-patient relations has an important bearing on how well patients respond to treatment. In the report, patient groups are quoted as saying that poor doctor-patient relationships prevent patients from coming forward for medical treatment and care—even when treatment and care is needed.


Doctors need to listen more to the patient

When asked what single intervention would most improve doctor-patient relationships, the groups cite "enhancing the communication-and-understanding skills of the healthcare professional" as their main choice, second only to "the provision of treatment and care that improves quality of life". In Australia, Italy, New Zealand and the UK, improving doctors' communication-and-understanding skills is ranked first, as the most important way of improving doctor-patient relations. Groups representing the interests of patients with cancer and HIV/AIDS also see such a development as the favoured way of improving doctor-patient relations among the patients in their disease specialties.


About the survey


What do patients think of doctors? is based on the results of a November 2010 PatientView survey of 2,500 patient groups from around the world. The survey asked the respondent groups what they think of current doctor-patient relationships, and how they believe those relationships might be improved.


The report covers most subject areas in which patients would like doctor-patient relations to be improved, including: l Access to health professionals l Access and choice during diagnosis and treatment l Patient information provided by health professionals l Doctor-patient communication l Gaining patient trust l Respecting patients' valuable time l Accountability of health professionals l Improving prevention practices l Which single action do patients want from government and payers to improve doctor-patient relationships? l Which pharmaceutical companies are having a positive effect on doctor-patient relationships? l Why pharma can have a negative impact on doctor-patient relationships.


The report analyses doctor-patient relations in 11 countries and one region of the world: Australia [number of completed responses = 60]; Canada [138]; Eastern Europe [105]; France [80]; Germany [100]; Italy [110]; the Netherlands [30]; New Zealand [55]; Spain [80]; Sweden [56]; the UK [566]; and the USA [292].


Doctor-patient relations are also analysed for the following 12 specialties: cancer [160]; diabetes [55]; gastro-intestinal [40]; heart and circulatory conditions [70]; HIV/AIDS [72]; mental health [170]; multiple sclerosis [35]; neurological [195]; Parkinson's disease [30]; rare diseases [70]; respiratory [35]; and rheumatological conditions 
Lydia E.  Neilson, M.S.M. , Founder
Chief Executive Officer
512 - 33 Banner Road
Nepean, ON K2H 8V7 Canada
Tel. 613.829.6667
Fax 613.829.8518


SEPTEMBER 22 - 25, 2011


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From 1978!!!

Wednesday, March 2, 2011

What's in a name?

"In the US, myalgic encephalomyelitis was never used."
We need to stop wasting our limited energies fighting amongst ourselves over who uses what name for this Damned Disease.  I don't have the power to change the name; if you want to write a long diatribe about CFS versus ME, send it to someone in government who does have the power to change the name.
My purpose in being here is to provide the facts to people who know little to nothing about the disease.  These are not people who are going to know to google ME.  They've just been diagnosed, or they have a friend who's been diagnosed, or heard about it on TV, and want to learn more.
If they join the CFS Facts e-group, they'll receive a welcome packet that includes the educational comment that it's also known as ME.  If they read this blog for more than 5 minutes, they'll come across that term.  But until someone educates them, they will not know that the preferred term is not CFS.  They won't find the information that I want them to learn if I insist that I'm only going to call it ME.  "In the US, myalgic encephalomyelitis was never used."  Only the most activist doctors are willing to diagnose ME.  They're going to tell their patients "you have CFS", and since that's the name the patients are going to be googling, that's the name I'm going to use. 
I teach CFS 101.  Those of you who are teaching graduate level courses can call it anything you like, because you're talking to people who are familiar with those other names.  I'm not.
Frankly, I don't give a flying rat's ass what they call it, so long as they cure it.
Katrina Berne notes "The CDC agreed to study the matter [of a name change] but later announced that the adoption of a new name is premature. In a catch-22, the present name trivializes the illness, thereby discouraging the research funding needed to uncover the pathophysiology of the disorder, which would help determine a more accurate name." 
And while this is true, that the name discourages government funding, we have patient-funded groups, we have WPI, who also don't give a damn about the name.  Judy Mikovits was looking for a virus not a name.
My time, money, and energy are going into finding a cure.  If you want to waste your time, money, and energy on something wholly non-productive, be my guest.  Because I'm going to get one sentence into your ten-page tirade and stop reading.  I have better things to do than to justify why I use the name that my target audience is using.

Can't get a publisher for your CFS book? DIY!

Tuesday, March 1, 2011

John Falk: Chronic Fatigue Syndrome and Psychotherapy


"Psychotherapy Eases Chronic Fatigue Syndrome, Study Finds," read the headline in the February 17, 2011 edition of The New York Times. Within a few days Chronic Fatigue Syndrome (CFS) ranked third on Yahoo's 'Trending Now' list. For the misinformed reader it's likely these headlines translated that CFS is all in your head.

Until now, I've told no one except a small inner-circle of family that my mysterious breakdown in health, vitality, and cognition that started the night of May 5, 2007 was not due to an exotic virus I picked up in the Congo while on assignment for National Geographic. The truth? I'm actually a textbook case of someone with CFS, a syndrome I sniffed at until it happened to me. For the sufferer CFS means a total health breakdown, like a plane that inexplicably begins tearing itself apart mid-flight. Together, all the various dysfunctions associated with it leave the patient in a state of health more debilitating than chronic obstructive pulmonary disease, heart disease, or multiple sclerosis.

There is no known cause for CFS, and most terrifying from where I sit, no cure.

X Rx: The Next Step

The paradigm has changed. It's the virus stupid. Even a doctor should be able to see it. It's an AIDS-like illness. Infection, inflammation, immunodeficiency. Just because it doesn't overwhelm the host like HIV doesn't mean we should throw out everything that's been learned in that disease. Now we even have a primate model. Not that we should have needed monkeys to prove it when we have millions of human beings freely sharing their by now many viruses. But the macaques show what the so-called Center For Disease Control should have figured out in 1991, when Elaine De Freitas published her paper:
Retroviral sequences related to human T-lymphotropic virus type II in patients with chronic fatigue immune dysfunction syndrome. DeFreitas

Protein discovery validates chronic fatigue syndrome theory

Gene Therapy Raises Hope for Future AIDS Cure - AOL Health

Can we do the same for CFS? 

Doctors Need to Know -- write to local doctors with ME/CFS info


Starting March 1, ME/CFS patients are educating physicians around the world of  retrovirus discoveries (XMRV) as well as other biological abnormalities found with this disease. With medical schools and government agencies not fulfilling this role, like so many other matters, patients are doing it themselves.

The campaign will last until March 15. Each patient is sending five letters and scientific documents to five physicians in their local area.

Read the website for further instructions.