Archive for January, 2014

IOM videos

Videos of the IOM open session (Monday 27 Jan, 2014) are now posted

(update) In chronological order: 1 2 3 4 5 6 7 8 9 10 11

( video # 12 does not seem to be on )

UPDATE (3 Feb 2014)  12 13 14 15 16 17 18 19 20 21 22 23 24 25 26 27 28 29


Public comment provided to IOM meeting

Preface —

I continue to be incensed at the manner in which DHHS arranged for this project and the lack of engagement by DHHS with this community.

I have serious reservations about this project, its end result and its impact.

The question posed by IOM was “What is the most important aspect or information that this committee should consider throughout the course of the study?” and each person providing public comment was limited to three minutes.

This was not an easy task as there is so much this panel needs to know, and needs to be cognizant of as this project goes forward. This project is a consensus study and I sincerely hope that any/all panel members who disagree with the findings of the panel feel free to produce written dissenting opinions.

I chose to talk about some of the hallmarks of ME and the process the panel will use. Here is my public comment:

Good afternoon.

Many thanks to all advocates for their presentations and comments as well as all participants near and far.

I especially want to thank Mary Schweitzer (Wisconsin ME/CFS(1)) and Charmian Proskauer (Mass CFIDS (2)) for highlighting concerns about young people.

I want to address 2 hallmark symptoms of this illness and then highlight five points about the process you will use.

Number 1 Post-Exertional Collapse(unfortunately known also as Post-Exertional Malaise (PEM))

Post-Exertional Collapse can result from minimal physical or cognitive exertion, is unpredictable and lasts for days or weeks. The pervasiveness of Post-Exertional Collapse often has no correlation with the minimal exertion of the triggering event.

Number 2 Impairment of Executive Function

Impairment of executive function is evident in areas such as processing speed, reaction time, working memory, and concentration. These impairments have been reported as significant concerns both in research and in reports such as FDA’s Voice of the Patient (3).

As of today (27 January 2014) you have just 371 days until your deadline for the clinical diagnostic criteria of this illness (4).


ONE – This illness may require different diagnostic criteria — such as pediatric (3) and adult – depending on the age at presentation.

TWO – The definition(s) used to select patients for studies greatly impacts the study results. Therefore – assessment of literature about this illness must include careful evaluation of the definition(s) used and the symptoms covered therein. The clinical diagnostic criteria that you have agreed to develop will have far reaching effects on diagnosis, health insurance, and treatment, and will likely have very important effects on school accommodations for young people with this illness.

THREE – Clinical diagnostic criteria for this illness should include detailed assessment of symptom severity and frequency (5) and should reliably assess post-exertional collapse and cognitive impairment.

FOUR – The clinical diagnostic criteria must include clearly defined criteria and appropriate assessment tools. It must be as accurate as is possible at this point in time.

As you develop the diagnostic criteria, think about how this criteria will best serve patients and practitioners.

The outreach strategy you develop to operationalize and disseminate this criteria must provide for widespread education about this illness so that patients are appropriately diagnosed — including all those who are currently undiagnosed or misdiagnosed (6).

FIVE – This afternoon is a very limited time to spend with those who know this illness best. FDA spent months pouring over input to develop The Voice of the Patient. Your work will be most successful if you engage experts and patients throughout the process.

Thank you.


  2. (see Cognitive Functioning in CFS)


  6. (accessed 18 Jan. 2014),

Reminder “At any point during the study, you may submit written comments to”

According to IOM, they will send an announcement when the video and meeting presentations are posted — estimated time — “a few weeks”.

IOM webcast link (for live feed) and “Chronic Fatigue Syndrome and the Crisis in Biomedical Research”

(1) Mary Dimmock speaks with Llewelyn King about Chronic Fatigue Syndrome and the Crisis in Biomedical Research on White House Chronicle –

(also available on these TV stations



(2) re. IOM webcast, 27 January 2014

Registration NOT required to view webcast

Link for live webcast (beginning at 1PM EST):

Reminder (emphasis added – “At any point during the study, you may submit written comments to”

(According to IOM, they will send an announcement when the video and meeting presentations are posted — estimated time — “a few weeks”.)

Videos to watch, post to read….

We urge you to:

(1) watch these videos by Dr. Nigel Speight about ME in children



(2) read this great post by Dr. Leonard Jason:

“Diseases can stigmatize

By Leonard A. Jason

Names of diseases have never required scientific accuracy (e.g. malaria means bad air, lyme is a town, and ebola is a river). But some disease names are offensive, victim-blaming, and stigmatizing. Multiple sclerosis was once called hysterical paralysis when people believed that this disease was caused by stress linked with oedipal fixations. AIDS was initially called “Gay Men’s disease” when it was considered a disease only affecting white gay men. Fortunately, when these disease names were changed, those afflicted with Multiple Sclerosis and AIDS experienced less stigma. Inspired patient activists from around the world are currently engaged in another major effort to rename chronic fatigue syndrome (CFS). It is a political struggle to alleviate some of the stigma caused by the language of scientists at the CDC 25 years ago. ….”        (

If you want to submit written public comment for the open session of January 27th, 2014 IOM meeting on Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

IOM has said:  It would be most useful if comments are focused on the following question: “What is the most important aspect or information that this committee should consider throughout the course of the study?”

Anyone can submit written comment to the meeting. (No limit on length.) What are you going to tell them?

If you submit by Jan 22nd the committee will get a copy of them before the meeting on Jan 27. Use this email address – Comments submitted after Jan 22 will still go to the committee, but possibly not until after the meeting.

All comments go into the public access file.

Additional info:

After January 27, send written comments to the project email address (

Reminder -the Statement of Work for this project – obtained by Ms Spotila – can be seen here: .

The tentative agenda for the January 27th, 2014 open session of the meeting on Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome.

Registration for IOM open session (Jan 27th 1-5:30pm) is now open

IOM provided the following answers to some questions (some questions still unanswered)

Meeting room capacity – after taking committee member’s table into account – 60 (sixty) people

Registration for attending the meeting will automatically close when 60 people have registered.

Webcast viewing – unlimited number of viewers, anyone with an internet connection (any country) should be able to watch.

Valid photo ID needed for security sign in at building entrance

Arrive 20-30 minutes ahead of session to avoid lines at security

Meeting room is on the main floor, close to building entrance

Sign in again at registration table (meeting room entrance)

No security escort required within building

Security guards are available to direct people to wherever they need to go

A room directly across from meeting room is available to people before the open meeting session and for rest during the meeting.

Restrooms are on the main floor (down the elevator hall — not sure where that is in relation to the meeting room)

Food and drink are available on the third floor of the IOM building (Keck). Cafeteria is open from 7:00am to 2:30 pm. Vending machines for food/drink are also on the third floor (near the elevators).

People may eat and drink in the meeting room.

Tentative agenda for open session

Brace yourselves

The latest post at OccupyCFS ( is a must read.

Ms. Spotila has found some very important information about the NIH project on research definition for ME and it is Not Good News!


“There’s an important meeting happening at NIH today and tomorrow, but you probably know nothing about it. The secrecy of this meeting is intentional, and the implications of decisions made at the meeting are as far-reaching as the Institute of Medicine study. In fact, what I’ve learned about the meeting may strike you as worse than the IOM study process. ….

…. advocates must demand more information about the P2P Workshop, and must demand meaningful opportunities to participate. The planning and execution of the Workshop should be transparent if it is to have any legitimacy in the advocacy community. ….. – ask questions, provide input, and present a united front based on the truths we know about ME/CFS. We cannot wait until the end of the P2P process to make our voices heard, especially since this process will provide input into the IOM study.”


read the full post here:

Many thanks to Ms. Spotila for getting and sharing this information with us!