Wednesday, November 9, 2011

My CFSAC Testimony

It's been ages I have posted here.

Some disturbing news have come- with WPI and Dr Mikovits going their own ways.
Then some exciting news with the Rituximab paper. More on that later- if I have it in me.

Yesterday and today was CFSAC time, a twice a year, 2 days event where members of the CFS Advisory committee makes recommendations to the Secretary of Health Mr Sebelius for what directions their government should take to further the cause of CFS. It's a big exercise of "We recommend..." and go back 6 months later and nothing has been done and more recommendations pile up. It's been going on for decades. Why bother, I wonder?  All we need is a  bunch of parrots. That would be much cheaper!

But what the heck, I decided to write my testimony, for the 6th time. Here it is.

CFSAC testimony November 2011

Dear CFSAC panel.

Thank you for your service. I hope that Secretary Sebelius truly listens to your directions and acts. Unfortunately I haven't seen much action since I got ill in the fall of 2008.

Over this past few months, we have witnessed some good scientific debates with exposure to other scientists, and great potential for research breakthrough and funding dollars. Still there is no promises and no grants have been promised, other than a 600 000$ to research behavior changes. Patients need more than a change of their behavior, in the same way that AIDS patients will not get better by eating less fat and more vegetables.

The CDC promised they would remove offending parts from their website. We have discussed it for the last years. They have not done one change to their website. So my physicians are still being told that I should exercise more, that they should prescribe more anti-depressants and that my natural killer cells should not be tested. It is critical that the CDC gets on with the program so to speak, and stops studying behaviors and psychology, association with painful periods and more gyne problems. Patients need to know if they have more chance to give birth to children that will have either autism or ME/CFS. Patients need to know if their disease is transmissible sexually or casually.

The CDC needs to apologize to all patients with ME/CFS for the despicable joke they have made of our disease. They need to recognize that they have been wrong since visiting Incline Village and since NOT visiting Lyndonville and take responsibility for stalling research as well as what they didn't do over the last decades, while other diseases like Rheumatoid Arthritis, HIV/AIDS, Cancer, and others benefited greatly from good research and funding.

CFSAC needs to recommend careful research on XMRV and human gamma retroviruses. Some patients are helped with the use of antiretrovirals, which has not been studied formally but prescribed to them compassionately. With the media outlets promoting contamination theory on both sides of the ocean, Dr Mikovits and her group's theory has been torn apart. Research in HIV would have stopped in 1983 but patients were dying so the government was forced into putting money into research. Here we are a very stigmatized group of patients who literally disappeared from society, however somehow it is considered ok to forget us over and over, because we are not dying, and because we are literally subdued- we can't even protest in the streets. It doesn't make it ok to keep on abusing us or make fun of us as a bunch of tired people. It is not ok for the governments of any countries to keep on abusing their patients and denying them a chance at being productive and thriving.

It is in my belief that clinical trial to confirm the very positive effect of Rituximab needs to happen as soon as possible. With this new data comes many questions. Is ME/CFS an auto-immune illness? Which patients are more likely to respond to Rituximab? Will rheumatologists embrace our illness and give us patients the opportunity to get well like the dozen of norwegians who benefited from Rituximab? How are the side effects and response rate comparing to Ampligen, which 15 years later is still not approved as an acceptable treatment for ME/CFS by the FDA?

How can CFSAC and Secretary Sebelius facilitate the involvement of rheumatologists with our illness, giving patients the possibility to get treatment near their community? Could this be legislated? The reluctance from the medical community to embrace ME/CFS as an illness is huge. There needs to be an intervention somehow, somewhere. Every single patients with our disease have at least 1 incident
where they feel they were disrespected, not believed, refused treatments and told to exercise and go to a psychiatrist. How many more suicide do we have to witness before our governments start to act? Patients have had hope for 2 years, and promises for clinical trials and treatments. This has yet to happen. Do we have to wait another 2 years until Rituximab can be approved?

Where is the hope when patients cannot see it at their local level and when the CDC cannot be trusted to spread the right message around the world?

Patients from around the world are looking up to you, CFSAC members and US government. The Norwegians have stepped up for their people. What will the USA choose to do?

Kati, sick for the last 3 years. Disability insurance in dispute. Financially going into a dark dark hole. Seen by a dozen specialists, 75% of whom lack respect for this disease. 15% more who have no clue as of what to do.


  1. Alex Young aka alex3619November 9, 2011 at 10:11 PM

    Hi kati, thank you for doing this. I am worried though that 2 years before Rituximab is properly trialed is a major underestimate. It could be much much longer.

    Traditionally it can take up to 10 years, and how long has it been for Ampligen as you point out? Of course Rituximab is already approved for other diseases, so the time period will be reduced for this. However, Phase 2 trials on Rituximab are expected 2013. P

    hase 3 trials take longer but there is no compelling reason they can't be at the same time for an already approved drug - we just need the will and the funding. Indeed why not skip phase 2 to go to phase 3?

    After the phase 3 trial we will fight another fight, although we are fighting that now two. Two words - funding and interference. Phase 3 trials are very very expensive. We can't even get good funding for basic research in ME or CFS.

    The we will get flak from government, insurance and the regulators, as well as competing theories like the UK biopsychosocial cult. Doctors themselves may need to educated, another campaign.

    So the outlook of two years is unlikely, and another decade without treatments may mean millions dead, millions more disabled, many millions suffering.

    All of this could well be done in two years with the right political backing. I see no sign of that happening.

  2. Hi Alex, thanks for taking the time to write and to comment.

    I agree with you, getting Rituximab approved may take a while, due to political will (or un-will)- stigma, and roadblocks that are the CDC, UK government and Wesley school. We are all sick and I can appreciate how difficult it can be to advocate for health care, in such a divisive community.

    I live in Canada. It means that I have rights to health care. It means that I have equal rights. One woman with ALS fought for her right to die, this went to supreme court I believe. what about our rights to live? I will fight for that. I will also look up "compassionate access" to drug, which is a program to approve drugs not yet accepted by Health Canada, mostly for cancer patients. as a chemo nurse, I was very familiar with the program.

    What really throws me these days is this one article that came out in the British Columbia Medical Journal. you can read it here -and I have commented on it. It is really hard to understand that money and time is spent for men's sexual function when over 411 000 patients with ME have no competent access to health care.

    There has got to be ways to reach out to them. Occupy. we may not be able to occupy the streets, but perhaps we need to find a way to occupy their conscience.

  3. Alex Young aka alex3619November 10, 2011 at 1:45 AM

    Hi Kati, I like your comment about occupying their conscience. That is a big point of petitions and protests after all isn't it? Maybe we can use is as a slogan;

    "Occupy Their Conscience:
    We can't occupy the streets, lets occupy their minds!"

    Speaking as a guy I can see why lots of older wealthy men are capable of pushing ED research and funding. However, there are priorities and ME is costing every country a fortune, and we have lost every aspect of quality of life, not just one.