Monday, April 4, 2011

NIH State of Knowledge

I flew into NY to attend the NYAS conference and then to go to Bethesda for the NIH conference on April 7th and 8th. I am the advocate for my daughter who remains housebound/bedbound in MN. She remains without medical care. I have traveled to many conferences worldwide to try to help her. This traveling takes me away from my caregiving role; and it is also expensive and time consuming. Imagine my surprise when I went online to register for the conference and was informed that it was “full”. Imagine my surprise when I emailed the conference organizers, asking how to approach getting into the conference, and received no reply.

I have attended at least 15 FDA and NIH and CFSAC meetings and have never run into this problem. I find this entire matter very suspicious. This is the best that the NIH can do in a situation were every action they take is under great scrutiny and great suspicion? What is with these people?

In reading further I discover through Hillary Johnson that the meeting was moved from a larger room into a smaller room, or is in a room smaller than might be otherwise. Why do they move (or hold) a meeting of this importance to a smaller room? Why, as the advocate for a disabled person, my daughter, am I denied access to the conference? Why, as an advocate for other disabled persons, am I denied access to the conference? I understand that supposedly there is going to be an outlying room or two available for “overflow”. Presumably the conference attendees using the “overflow” room will be able to watch the performance on television screens. What is this all about? Why can’t they just have the conference in a larger hall where they can accommodate additional attendees?

I have made great efforts in time and money to attend this conference. I have had to give up a great deal to attend this conference. Many patients, including my daughter, are expecting me to listen for them and to represent them in any way that I can. I do not like being boxed out. I am also not interested in being placed, with my son who is also attending, in an adjoining or separated room watching a television monitor of something that I could watch in my room back in Minnesota and he could watch in Baltimore. What is going on here?

One of my friends, disabled with this illness, made a reservation online. She has requested special arrangements so she can put her feet up (a foot stool would do) and have a place to lie down during breaks, and it is suggested that she can watch in an adjoining room. This woman has attended various conferences and always been assured that her special arrangements can be meet without having to leave the main room, where she wants and needs to be. Otherwise she could watch on her laptop in her bed. This patient, an important advocate for us all, believes that making eye contact with the presenters is critical, especially in regards to asking question, a necessary part of any public hearing of this level of importance. I feel the same as it is impossible to ask penetrating questions without seeing the person whom you are questioning - as nuance of expression and body language is critical in such exchanges.

I also object to having ME/CFS patients watch the proceeding on a television. Many of these patients have sensory deprivation and cannot actually watch a television nor tolerate the frequency of the sound that emanates from a television. Just because those that work at NIH can lounge around watching television and computer monitors all day, they are not excused from knowing the minimum problems that some of these seriously disabled patients might have. The NIH should pay a bit more attention to this - perhaps they could read my blog and learn a thing or two.

I have other serious objections. The NIH, on the conference webpage, defines ME/CFS as a “poorly-defined illness”. Who has defined this illness poorly? The CDC and some of their colleagues in Britain have defined it poorly. The Canadians have defined it well. It is a well-defined illness when correctly defined. The NIH should adopt the Canadian Consensus Criteria that would allow them to define this illness with great clarity and confidence. In reality, this illness is not poorly-defined.

And then there is the question of not publishing the schedule of speakers. The conference is four days away and no speaker schedule has been published. What is this about? Doesn’t the NIH know that people have to make plans? Patients make there travel and accommodation plans based on who might be speaking and when. They do not have the freedom of healthy bureaucrats to come and go as they please. Those ME/CFS patients that can actually come to such a meeting have to be able to pace themselves and make elaborate arrangements so that they can get through these talks - talks which have such great import and consequence for their lives. They do not have secretaries to call and make last minute travel arrangement changes. Their travel is all on their own dime and, as disabled patients, they have little money. But they have great, great interest and, in this schedule mishap, they are being cut out. How incompetent are these NIH people?

I am a bit unsure about this “State of Knowledge thing”. I ask around, “What does this State of Knowledge thing mean?” No one knows. My first instinct is to ask myself, “Whose knowledge – mine or theirs?” Someone told me that this is the first NIH State of Knowledge regarding ME/CFS. Someone told me that there was a State of the Science Conference on Chronic Fatigue Syndrome in 2003. Summaries produced at NIH State of the Science Conferences are considered to be "historical" (basically obsolete) after 5 years. When Dr, Hanna, formerly responsible for the CFS program at the Office of Research in Women's Health, was asked at a CFSAC meeting whether it was time to have another State of the Science meeting about CFS, she replied, "There is no science in CFS." Apparently she was unaware of the hundreds of papers published about CFS since 2003. Many of them (although, as we know, not all) used a well-defined patient population and demonstrated infections, metabolic abnormalities, measurable immune abnormalities, cardiac abnormalities, central nervous symptom abnormalities, etc.

It's difficult to tell from the NIH website what a State of the Knowledge conference is supposed to be. There does not seem to have been any RFP (Request for Proposals=grant money) issued in association with this conference. There doesn't seem to be any requirement that any information be disseminated to clinicians as a result of this conference. So what's the point? Is this the reason they haven't firmed up the schedule YET? Are researchers unwilling to come speak because they know this conference is a useless exercise? Just wondering. It seems that a State of Knowledge meeting is one step down from a State of Science meeting. Is that what we need – a downgrade? This is shaping up to be one sorry show.


  1. Smells bad indeed the way you explain it...unfortunatelly, even if we know is not the case, for the scientific community XMRV is starting to fade as a lab contaminant, and We desperately need more published papers that proof is not.

  2. yes things are so bad in the Uk .Here the document summarising the comments that NICE received on the
    possible revision of the CFS/ME guideline The Royal college of pediatrics and child hesalth are saying this

    We suggest that NICE revisit the
    literature in two years to see if an update is warranted at that time.
    We think that a future update would need to address the issue of causality.
    However, this is merely academic until there is a consensus on aetiological
    Regarding the epidemiology of chronic fatigue syndrome: as a psychological
    illness with physical manifestations, clinical experience suggests that the
    incidence appears to be falling in children and young people. We think a future
    update should address whether this is correct and, if so, why.

    > > i.e.
    > >

  3. thanks PA! Got to say... this is why there are "sunshine laws" ... do we live in a democracy (or a representative democracy for those history teachers reading this) or do we live in what might be best called a "mixed oligarchy." There are a ton of people (well maybe not a ton, but there are plenty) trying to do good research in M.E. But these people: Dr. John Chia, Dr. David Bell, Dr. Judy Mikovits, the Dundee Group in the UK, and many others are being "frozen out" of the funding process.

    I keep thinking of it this way. We are the chickens but the "committee for chicken safety" has a "fox with a veto" ... thus nothing gets done. I am referring to the people in the phsyciatric viewpoint... who are effectively able to shut down any grant in the biomedical research no matter how well and thoughtfully designed.

  4. You were treated shoddily at the NYAS, for whatever reason -- and I think that is inexcusible. I think you are playing an important, reasoned role in moving things forward and organizers should be accommodating.

    I, too, was sceptical about the upcoming NIH workshop, but have you seen the just-published phenomenal line-up of participants? I would love to learn what you think about the agenda and how it might advance diagnosis & treatment. I think the 'summary and panel' discussions concluding each session are excellent -- especially the final summary with all speakers & co-moderators where responses from the government are listed as an agenda item.

  5. By denying the special requests for reasonable accommodation by the disabled persons wishing to attend the event, the NIH just set itself up for a big, fat, juicy discrimination lawsuit under the Americans with Disabilities Act.

  6. Would you not just love to sue their pants off!

  7. Dearest PA. Talk to Karen Ravitz (PM her on FB). I feel sure she would help you get a seat! Or Pat Fero, Mary Schweitzer, etc. You know one or more of the patients planning on attending will not be able to, and there will be room for you.

    The Agenda is out today and it looks good. I hope you will go and find a way to get into the main room. Tell them you represent US, all of us who cannot attend, and WE expect you to be our eyes and ears. Call Amy Marcus Dockser and ask her to give you a press pass for the day or two you want to attend; that way, you will really have a case for grievance if denied entry.

    I hope you'll find a way! Ask Judy to get you in!

  8. I dug up this agenda from the FB CAA website:

  9. ME/CFS is not an adequate diagnosis. The Canadian def is mixed features of ME and CFS. ME patients want an ME diagnosis and should not be saddled with a CFS diagnosis in any form. It is unacceptable. We've been sold out many times and will continue to rise to fight for our rights.

  10. I for one will be gutted if you don't make it PA. It is not just the whites of their eyes that you need to see but their reactions, their mannerisms, their sweat(!), assessing if they are telling the truth or not, these cannot be read at the end of a television screen. Your piece on Jonathon Stoye was an excellent illustration on this, just brilliant. It also gives them faces to really a disease which is suffered behind closed doors. I just wanted to say thank you to you too, us sufferers suffer ME, but without Patient advocates/partners/spouses/parents/friends we would be in a far worse place, you are the unsung heros in all this.


  11. I am rather annoyed that Judy Mikovits' 20 minutes will be followed by 20 minutes of John Coffin telling everyone that XMRV is a contaminant. John Coffin is not a CFS researcher. Now that alone should not exclude him, but why give his hypothesis - for that's what it is - equal time to the wealth of data and published work compiled by the WPI and others that support the idea that MLV-related viruses infect people with CFS? That is not a balanced representation of the State of current Knowledge.

  12. Well, I think we all know Dr. Hanna is a scumbag, just add the 'there is no science in CFS' to the list of blatant lies she has spouted.

    I too was angry when I read the summary intro for the conference. As usual, they tried to recast their lies and failures as instead being the fault of complainers with a bunch of 'vague' symptoms. You are very right that it is not an 'ill-defined disease', it is a disease that has been intentionally defined badly/wrongly by CDC and the UK charlatans.

  13. It makes no sense to put it in a small room. Anything you can do in a small room you can do exactly the same layout in a larger room and then put extra seating in the unused area. The NIH campus is huge- there are several shuttle bus routes just inside the campus and there are more buildings outside the campus. I took a quick look on their website and was able to identify three auditoriums and an amphitheatre and there are probably more.

    This is the first conference/workshop they're having in 8 years (and the last one was reportedly psych BS) and there's obviously a lot of interest in ME these days, at least on the part of patients. The only reason I can think of putting it in a small room and putting out the speaker list 4 days ahead of the conference is to discourage people from attending and make sure no patients can ask uncomfortable questions or otherwise point out their malfeasance.

    Lipsett Amphitheater - Building 10
    Masur Auditorium - Building 10
    Natcher Building - Building 45- auditorium
    Lister Hill Center - Building 38A- auditorium

  14. this downgrade to a smaller site and subsequent exclusion of CFS personnel is exactly the wrong message. have we not been promised more attentive action? Actions speak louder than words! Another punch to the gut! Seriously, how much more are we going to take?

  15. Thank you so much for this post.
    I have severe ME, three decades. You advocate for me.

  16. Even the revised Canadian consensus definition is a mixed bag which saves face for CFS protagonists. Unfortunately it does not diagnose people with ME. The ME definitions, Ramsey, Hyde 2006, discriminate neurological ME, aptly named because there is myalgia and encephalomyelitis. Encephalomyelitis was shown by Marinacci from the LA epidemic, 1934.

  17. Hi Again PA,

    Please just Crash it! I'll be gutted if you don't make it there too. Also I believe you are right on with XMRV:: the battle lines are being drawn about if you can research this as a serious and biomedical illness.

    For example, there is no definition in use to diagnose those sick for less than six months when investigating earlier stages of M.E. could reveal critical information! Not even the CCC, if memory serves. After 30 years... why is that?!

    Please go and represent us.