Notes for Monday 5/16 Radio Show

Kitty, in her young 20s. Has had ME/CFS since puberty. Showed signs after vaccine, but mild. After case of mono, she plummeted and is very disabled now. Her grandmother has the illness too.

Suzan Jackson, a mother who has ME/CFS. Both her sons have it too. They all got sick within a couple of years of each other. No known connect to vaccine and she does not think there is one. She sees it as likely genetic and infectious, in their case. One of her sons was 6 when he got sick with the symptom of chest pains. The family is very concerned about the financial situation as she is limited in her ability to earn and it is likely the two sons will not be able to work full-time as they become adults.

Both Suzan, her sons, Kitty and her grandmother were in Washington this week as part of ME/CFS Awareness week. Suzan testified before the federal committee and the video is available now. I can send you the link. This is Suzan’s testimony:

I think Kitty participated in a demonstration, holding up a banner, giving a message to government officials concerning lack of attention to ME/CFS. She is the younger one with red hair, I think:
This is a new video that shows the invisible part of the disease. We may look well, temporarily, a few hours or a day. But what people don’t see is how sick we are the next day or for days.

In April, the National Institutes of Health hosted a 2-day research workshop. The goals were to share what is known, Find the gaps of knowledge and look for opportunities. It was so lively that they ran out of time, despite having to cut short some breaks. But much knowledge was shared and some was debated.

The workshop was structured in such a way that NIH researchers from other areas (that is other illnesses) were brought in to listen and to be the moderators and give summaries. So, those who know nothing of ME/CFS learned a lot. The idea is to peak their interest. The room sat 100, but there were so many who attended that they had to use another room for overflow. 900 watched it live throough the Internet. It is also archived with 1,200 who have listened to the archived video.

The gaps identified are:
All scientists are working in their own area and not collaborating, which means they are drawing conclusions based on their own specialty. Immunologists are finding the immunological abnormalities, neurologists find the brain abnormalities, infections disease researchers find infections. So, each specialty thinks the answers to the disease are in their area. It’s the classic blind men and the elephant with each one describing what the elephant is like based on the area of the elephant they feel.
Also, a main issue raised from a researcher not in the ME/CFS world was why the studies often have small number of patients. The answer given to him is lack of funding for studies. Also, it’s hard to find patients for studies. There is no specialty assigned to ME/CFS. So patients see a variety of different specialists. However, if someone wants to do research into fibromyalgia, they contact rheumatologists because that is the specialty for fibromyalgia. ME/CFS doesn’t have a set up like that. Also, a few, maybe no more than 15 across the nation, have chosen to focus on care of ME/CFS. That’s a small number to draw patients from. The CDC says 85% of ME/CFS patients have not been diagnosed.
There was another one I forgot. Here is the video of Dr. Dennis Mangan’s testimony with a summary of the NIH Workshop: (Go in 1 hour 13 minutes.)

During May, there has been training for advocay and awareness, one patient asked President Obama to do more for ME/CFS in a town hall meeting. Patients have been sending e-mails and faxes to the president and congressmen, visiting congressmen’s offices in person. Also, there has been flyers distributed to the public, a demonstration in front of the Department of Health and Human Services and testimony before the federally-appointed Chronic Fatigue Syndrome Advisory Committee.

Last week, there was so many at the CFSAC (Chronic Fatigue Syndrome Advisory Committee) that it was too many for the room according to fire code. Some advocates had to demand that patients be allowed in, including a mother and daughter who traveled to Washington just to come to the meeting.

Here is the cartoon we have been sending to Obama:

Oh, and of course, the public service announcement we are distributing and is being aired now:

The CFSAC (Chronic Fatigue Syndrome Advisory Committee) included public testimony. It is always emotional as patients tell their stories of how this illness took their lives, for some 30 years ago, leaving them in a state of no life, or that their life stopped 30 years ago. And for some, it does bring death.

Some consistent messages from the public were:
Fund ME/CFS research. “I am worth more than $3.64” is a button worn at the meeting and during “lobby day.” As a physician said at the NIH Workshop, “We need a Manhatten Project,” some in the audience referred to.
Establish centers of excellence or networks of clinicians and researchers for this disease as there are for other diseases
Further research into viruses, including the MLV-related viruses
Take down the obsolete information on the CDC website that is harming patient access to care
Use the Canadian Consensus Criteria for definition of the illness
Make Ampligen, an anti-viral and immune modulator, available out of compassion
Make education of ME/CFS part of medical schools and nursing schools curricula
Do family studies and research the outbreaks, research what comorbidities develop in ME/CFS patients in lifetime studies
Change the name of the disease

Dr. Howard Koh, the Assistant Secretary of Health, reported to the committee that Secretary of Health, Kathleen Sebelius, met with him and an employee from AHRQ (who is also a patient) concerning ME/CFS. She wrote a letter that was read at the NIH ME/CFS Workshop. So basically, it is on the radar at the highest levels. Also, Dr. Francis Collins, director of the NIH, spoke at the ME/CFS meeting.

The committee made some recommendations to the Secretary of Health:
Put CFS into the same category of neurological conditions as post-viral fatigue syndrome and myalgic encephalomyelitis is in the coding book that physicians use for diagnosing, and for which insurance companies look at.
Another recommendation that came out is that a specific request for application (government asking for applications for research grants). The recommendation is that the RFA particularly require interdisciplinary (collaborative- multiple body systems), translational (treatment) study. Fund it according to the cost of the country and the number (1 million) are ill. ME/CFS costs $18-23 billion annually to the country in loss productivity, disability and medical costs.
They set up three people to review the CDC website to see what is obsolete. Also, they discussed setting up database of patients for reverse translational research (from the patients to the researchers instead of researcher to physician to patients).

So, a lot is going on. Patients are no longer suffering in silence. The patients are getting smarter and louder and working together. With new people in key positions in the federal government in CDC and NIH, a change in attitudes are leading to changes. The missing link on the government end is research funding.

More public comments: (the video of the first day of the CFSAC meeting) To see the public comments, click on the Public Comments (two of them) under the picture and it will take you directly to that portion.)

Below are some who spoke:

Pat Fero, who lost her son to the disease (death), read the testimony of Benjamin DiPasquale, 22, who got ill at age 18 after mono. He was put into a psych ward for four days because physicians did not understand his illness. He has now been diagnosed properly but is severely ill.

Sheryl told about her being told her ME/CFS made her health was too bad that she was not eligible for chemotherapy for her breast cancer, leaving her more susceptible to re-occurance.

Joseph Landson told committee members that he is in favor of cognitive behavioral therapy to be given to the doctors so they can be cured of their inaccurate illness beliefs. (He was being sarcastic.) (He used some props.)

Rachel Smith, sick for 20 years. She is now 27. She got sick at age of 6 1/2. She said she has never been shopping for a dress, never had a first date. She said she didn’t have friends her age. Her friends were doctors in their 40s and 50s.

Charlotte Von Salis suggested Soc. Security be put in the Blue Book, which will make disability process for many CFS patients a 3-step review process instead of 4 or 5-step review process. She spoke about the outbreaks and said the CDC criteria does not match the illness of the outbreaks.

Jenine, 17. She was told to see psychiatrists. Even after correct diagnosis, the care didn’t change. Physicians who knew the illness wouldn’t see her because she was under 18. Often a major symptom one week is gone the next week. She has no high school memories. She was a candidate for National Honor Society, but even though she had the grades, she did not have the extra curricular activities.

Tom Hennessey said Anthrax has been getting over $100 million each year in the last ten years. Yet, he said, only about a dozen people in the US have gotten Anthrax. He said money should be taken from Anthrax to fund ME research. The pentagon should declare this disease a national emergency.

Mary Schwietzer, PhD, asked why does NIH spend less than 1% on ME/CFS research of what they spend on multiple sclerosis. The CDC website has wrong information. She spoke about the influence Peter White, who has connections to insurance, has on the CDC.

Bob Miller started off by saying he is worth more than $3.64. Bob was the one whose wife spoke to President Barack Obama about ME/CFS. He asked how is it that illnesses that are comparible in disability, such as autism and MS gets much more funding and have centers of excellence than ME/CFS. We are at the same level of funding as 1992 when the estimate of people with ME/CFS was 13,000. But the government estimate of people with the illness now is 1 million.

Kathleen Manganero. She has had ME/CFS since 1984. She spoke about the connection her illness has to mold. She lost her twin daughters soon after birth.

Dr. Grobstein told about Casey Fero. (This is son of Pat Fero, who spoke earlier.) Casey was diagnosed at nine, and he died suddenly at 23. His heart was loaded with viruses. His heart tissue was lost. The viruses in his heart were never identified. The CDC has not studied family clusters and has not studied geographic clusters in over ten years. They should use the Candian Consensus Criteria to diagnose. Japanese researchers have identified small heart syndrome in ME/CFS patients and this might be from viruses. The NIH should convene a meeting of medical school leaders to educate them on ME/CFS. The NIH should convene a meeting of clinicians for them to set standards for diagnosing and treating ME/CFS patients. Also, CDC has inaccurate information on their website. It says orthostatic intolerance treatment as experimental, which is inaccurate as it is a test used at John’s Hopkins for 25 years as part of CFS diagnosis and treatment.

Nancy, from Hemispherex (company that makes Ampligen). She said they are working with Whittemore Peterson Institute and found that Ampligen is making improvement in ME/CFS patients who are XMRV positive. They are finding a biomarker that they have filed a patent.


Author: Leslie Carol Botha

Author, publisher, radio talk show host and internationally recognized expert on women's hormone cycles. Social/political activist on Gardasil the HPV vaccine for adolescent girls. Co-author of "Understanding Your Mood, Mind and Hormone Cycle." Honorary advisory board member for the Foundation for the Study of Cycles and member of the Society for Menstrual Cycle Research.