Saturday, April 2, 2011

Time is running out

Pat Fero recently said to me:
        "I hope to create an understanding that
        whatever patients do to get someone's
        attention, although seemingly hostile
        and inappropriate, it is because we are
        3 generations in. CFS patients are the
        most patient people around"
And she's right.  We've been waiting since the 1980s for someone to take notice and get us the research to get us back to work, instead of just verbally abusing us as being too lazy to work, or crazy, or whatever other insults they want to hurl at us because they don't understand that the real problem is that we can't work.  We've tried and failed.  We've been fired because we can't keep up the pace.
Unlike AIDS patients, who very quickly organized ACT UP protests, we didn't.  We've been patient for over a quarter-century. 
It's been 20 years since Elaine DeFreitas discovered her virus and had her career ruined by the minions who didn't want to admit that their Saint Stephen of Straus might be wrong in asserting that we were all just depressed menopausal women.
We've watched "our" money squandered on research having nothing to do with CFS.  We've seen an audit demand repayment of that misused money to the CFS fund, whereupon it was misused a second time!
The average life expectancy of a CFS patient is 57 years.   Our first-generation activists, the Pat Feros and Mary Schweitzers, are older than that, already living on borrowed time.  I'm in my 50s and wondering how much time I have left: did that 12-year remission buy me any time?  Or am I enjoying a last hurrah before I wind up permanently in a nursing home, unable to take care of myself and just waiting to die?
We're running out of time and patience.  If the spectre of imminent death scares us into being "hostile and inappropriate", so be it.  Or is it simply seen as "hostile and inappropriate" because the powers that be aren't used to proper well-bred ladies having enough backbone to stand up and yell "we're mad as hell and not going to take it any more!"?  Because, let's face it, the first AIDS patients were mostly male, and the perception is that most CFS patients are female, so we're going to be held to a different standard.  We're not supposed to have balls, we're supposed to be quiet and ladylike and accept whatever the male patriarchal system deigns to throw our way.
We, the patients, are sick.  We can't do much in terms of organizing protests.  But what we can do is get this Damned Disease on the radar of female groups like NOW and National Women's Political Caucus and convince them to stand up for their dying sisters.  If you're a member of such an organization, write to them.  Post CFS info on their Facebook page.  Get their attention!
CFS/Fibro Awareness Day is May 12.  We still have time to get some big demonstrations organized with our healthy sisters taking the laboring oar.

Paying People To Stay Home | But You Dont Look Sick?

Point this out to anyone who calls you a mooch because you collect SSDI!

Wednesday, March 30, 2011

May 12 Advocacy Event in DC

PANDORA is organizing a May 12 lobby day; registration and training are required. Here is the link to more info -

Physician empathy may mean better patient outcomes

"For those of us in primary care medicine who have devoted much of our working lives to developing empathic relationships with our patients, research findings of improved patient outcomes among the more empathetic physicians is very gratifying indeed," said one of the study's authors, Fred Markham, MD, a family physician and professor in the Dept. of Family and Community at Thomas Jefferson University Jefferson Medical College in Philadelphia.

In a prepared statement, he said, "We have long believed in the importance of empathy, and finding measurably better outcomes lends support to our attempts to nurture empathetic medical students and residents who will pursue careers in every kind of medical and surgical specialty."

If a physician is more empathetic, it can lead to better understanding and trust between the doctor and patient, said lead study author Mohammadreza Hojat, PhD, a research professor of psychiatry and human behavior at Thomas Jefferson University.

* * *

There are two types of doctors: those who got into it to help people and those who got into it for the money.  I've had both kinds.  The ones who were only in it for the money wrote down the first diagnosis that came to mind (if you're tired, you're automatically depressed, case closed, no reason to do more blood tests).  Those who were in it to help people listened carefully to the symptoms, asked questions to clarify, and were willing to do every blood test under the sun if that would lead to correct diagnosis.

So it's no surprise to me that empathetic doctors, who aren't just spouting nonsense like "all divorced women are depressed", produce better outcomes, because they're not handing off pills that have nothing to do with the illness the patient actually has.




 Speak Up About ME invites you to add your voice!

May 12th is ME/CFS Awareness Day.  On May 11, 2011 as part of my testimony at The Chronic Fatigue Syndrome Advisory Committee (CFSAC)  in Washington,  I will speak on behalf of those who became ill with ME/CFS before the age of 22 years.

If you had early onset ME/CFS (no matter where you live), you can participate by giving me your name  (real or alias) , age at onset, age at diagnosis, current age and the country you live in.    

Please send your information to 



Please note that by giving me this information, you are giving me permission to use this information in my CFSAC testimony and at any other time when relevant to ME/CFS.

-            Send CFSAC a note (no more than five typed pages in length).

Explain why what happens in the US (in this case, about ME/CFS) matters to people in other countries.

Public comment to be given as printed material to CFSAC members for review, needs to be sent to the Executive Secretary at  HYPERLINK "", prior to close of business on Monday, April 18, 2011.

            Watch the livestream (follow links from here ) of the proceedings on May 10th and 11th (May 11th is Speak Up About ME). Watch the archives of CFSAC meetings. Encourage others to watch the livestream and view the archives. We have been told that viewing numbers (even of the archives) are taken very seriously. **

* Please note – submissions should be respectful. Constructive suggestions are especially useful. (Antagonism doesn't move us forward.)

**Also please note – on the afternoon of May 11th, participants (who are able to) will be meeting with congressional officials

"Members of the public not providing public comment at the meeting who wish to have printed material distributed to CFSAC members for review should submit, at a minimum, one copy of the material to the Executive Secretary, at  HYPERLINK "", prior to close of business on Monday, April 18, 2011. Submissions are limited to five typewritten pages. If you wish to remain anonymous, please notify the CFSAC support team upon submission of your materials to  HYPERLINK """


Thank you,

Denise Lopez-Majano

"Speak Up About ME, Invisible No More!" - Let's Make This HAPPEN!!


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


Nmefman-contacts mailing list

Natural Pain Remedies from Your Kitchen - iVillage

Baker & Daniels - New Interpretation of ADA


On March 24, 2011, the Equal Employment Opportunity Commission (EEOC) announced that it has approved final regulations interpreting the Americans With Disabilities (ADA) Amendments Act. The announcement marked the culmination of more than two years of debate among the EEOC, employers and employee interest groups concerning the scope and interpretation of the ADA Amendments Act.

 the final rules eliminate the list of conditions that automatically render a person disabled and clarify that an individualized assessment is needed to determine whether a person is disabled under the law. However, in guidance concerning the final regulations issued in "Questions and Answers" format by the EEOC, the agency continues to take the position that "Certain impairments, due to their inherent nature . . . will virtually always be disabilities."


2011-03-29 Strategies for Detection of XMRV in Blood by Judy A. Mikovits

Judy's slides from NYC presentation

Sunday, March 27, 2011

Why we advocate

" What we have done for ourselves alone dies with us; what we have done for others and the world remains and is immortal."
- Albert Pike

Paper on Epidemic Myalgic Encephalomyelitis

Register for FREE access

Letter from Dr. Lapp re HemispherX testing (excerpts)

I suspect that information relayed this past week to us will change the field of medicine forever. 

This difference has been explained as a "shift" in the genome attributed to time and distance. That is, over time viruses tend to mutate slightly, and it is not exceptional for viruses from one geographical region (Lombardi/Mikovits on the West Coast) to differ slightly from those in another region (Lo/Alter, East Coast).  This was seen, for example, in the 2009 swine flu epidemic where over 50 different strains of H1N1 were identified from Hong Kong, Singapore, Malaysia, etc.

Now, here is the most intriguing part of our Hemispherx meeting.   It took hundreds of scientists at multiple sites ten years  to map out the 3 billion nucleotides in the normal human genome.   Dr. Carter introduced us to Howard Urnovitz, CEO of Chronix Biomedical.  Urnovitz revealed  that his research group is able to map genomes at a very rapid pace.  He expects that in the near future,  Chronix will be able to map your entire genome in under six hours  and for probably less than a $100 fee.   This is StarTrek medicine!

Urnovitz went on to explain that when apoptosis occurs, chimeras are spilled into the blood stream and can be extracted easily by his laboratory.  When his lab examined the genomes of persons with CFS they found chimeras made up of XMRV genes (but oddly missing their LTR regions).  .

This technology is wonderful news for PWCs because if  XMRV or MLV can be clearly shown to cause CFS, then we will have an inexpensive and unique  marker for the disorder!

The Chronix test is not currently available commercially, but Hemispherx plans to explore the use of this technology in future studies.  

These data suggest that subjects who are XMRV+ have an edge in responding to Ampligen, and that Ampligen may be a treatment for CFS.

Because AMP-511 is a treatment protocol and not a drug study, insurance may cover some or all of the expenses involved. 


We owe a great debt of gratitude to Dr. William Carter and Hemispherx Biopharma for developing  Ampligen – the only proposed treatment for CFS – and supporting research in CFS for over 22 years.  I know that Dr. Carter, his colleagues, and his company have experienced the same kind of humiliation and disdain that all of us involved with CFS have experienced, and it is a testament to their courage and determination that they have endured all these years when they could have abandoned CFS for more lucrative areas.