Archive for May, 2013

One of our ways of explaining

While this was written by way of explanation of some of what people might see if they see my sons, please feel free to adapt it if it might be of help for you.

If you see my sons and don’t get much reaction from them:

They are not depressed.

Please understand that one of their coping mechanisms is maintaining an even keel.

Showing emotional highs and lows, even in greeting someone, uses too much energy for them.

They are not being rude. They are not sullen. They are not displeased. They are not ignoring you.

They appreciate you. They appreciate your presence, involvement, support… But they don’t have energy to show /convey that.

If they make eye contact, that’s acknowledgment.

If they manage a raised eyebrow, a tiny upturned corner of the mouth, the slightest nod of a head – that is huge. And to do that, they must be feeling pretty good (relatively speaking of course).

You may notice a fair amount of non-verbal communication between us. It may be our heads touching, hand on a shoulder, a goofy look from me…. We have developed a shorthand that between us that requires less of their energy to convey and process. It is usually easier for them to talk with me because we have shared so much of this wretched ME experience together and they don’t have to give as much detail or explanation.

Five days into one crash, one of my sons was (still) feeling that breathing was not automatic, that his brain was barely functioning at all.

And yet making the conscious effort to breath requires cognitive exertion and cognitive exertion further exacerbates the crash…..

Don’t ask him to make decisions – he just can’t do it.

Don’t expect him to have ideas.

He may be able to say yes or no to an option but not be able to come up with a substitute if his answer is no.

Don’t be surprised if he “zones out” mid-sentence, mid-bite, mid-word. It’s as though the brain gets stuck, on hold ………


Additions from LD

If their response is very succinct, it may well be because they are trying to cope with pain, don’t have energy to explain in depth….

It is often best to ask only 1 question at a time.  2 is too (2!) many.

Just because they “look” fine, does not mean that they feel fine.

If they wince when you hug them, it is not because of you, it is because it causes them real pain.

If they leave an area, it isn’t because they don’t like the company – but it likely that there is too much noise, too much commotion, too much scent, it may be too bright, there may be too many conversations going on to track and by leaving the area they are trying to “last” and not crash.  Their senses go off the charts, way faster than yours do. They will come back if they can.

Don’t feel badly, if they cancel on you at the last minute (or seem to ALWAYS cancel plans) – they don’t know minute to minute, let alone day to day, how they will feel.

Don’t be surprised if they say they feel fine. This is all relative. They always feel “bad” – just varying degrees of it. So if they say they feel fine, it likely means they feel about at baseline, about their usual and not their worst.



The CFSAC meeting will be live-video streamed at



When: May 22-23, 2013  

The CFSAC meeting will be live-video streamed at 9AM-5PM

Listening- if you prefer to listen only audio, (via telephone)

Audio Line to call in to the CFSAC meeting: 1-866-500-6250, participant code: 9487727


CFSAC Spring 2013 Meeting
May 22, 2013

9:00 am Call to Order

Roll Call


Gailen D. Marshall Jr. M.D., PhD

Nancy C. Lee, M.D.
Designated Federal Officer

9:15 am Welcome Statement from the Principal Deputy Assistant Secretary for Health Wanda K. Jones, Dr., P.H.
Principal Deputy Assistant Secretary for Health
U.S. Department of Health and Human Services
9:45 am Opening Remarks Gailen Marshall Jr. M.D., PhD
10:00 am Agency Updates:


Ex Officio Members
10:30 am Break  
10:45 am Public Comment Public
11:45 am Lunch Subcommittee Members
1:00 pm
  • Approve the Prioritized Recommendations List
  • Accept proposed list of ME/CFS Orgs’ websites
Gailen Marshall Jr. M.D., PhD
1:30 pm CMS Medicare Coverage Louis B. Jacques, M.D.
Director of Coverage and Analysis Group Center  for Clinical Standards and Quality
Centers for Medicare and Medicaid Services
2:30 pm Break  
2:45 pm Public Q&A Public & Committee
3:15 pm Committee Discussion and Plans for

Day 2

Committee Members
5:00 pm Adjourn Nancy C. Lee, M.D.


CFSAC Spring 2013 Meeting
May 23, 2013

9:00 am Call to Order
Roll Call

Opening Remarks


Gailen D. Marshall Jr. M.D., PhD
Chair, CFSAC

Nancy C. Lee, M.D.
Designated Federal Officer

9:15 am Agency Updates:


Ex Officio Members
10:15 am Health Insurance Anand Parekh, M.D., M.P.H.
Deputy Assistant Secretary for Health
(Science and Medicine)
U.S. Department of Health and Human Services
11:00 am Break  
11:15 am Public Comment Public
12:15 pm Lunch Subcommittee Members
1:30 pm How to get more clinicians involved in ME/CFS? Susan M. Levine, M.D.
Lisa W. Corbin, M.D., FACP
2:30 pm Break  
2:45 pm Public Q&A Public & Committee
3:00 pm Committee Discussion Committee Members
5:00 pm Adjourn Nancy C. Lee, M.D.


NIH and funding priorities

Hint, ME(cfs) isn’t one of them.


Ms. Spotila at Occupy CFS has another post that deserves to be read, discussed and shared widely:

….The 2012 numbers are now available, and the news is not good at all: funding has fallen off a cliff to its lowest level since 2008.

First, recall that NIH had projected to spend $6 million on CFS research in 2012, the same as the amount spent in 2011. Unfortunately, NIH now says that it spent $5 million in 2012, and projects the same amount for 2013 and 2014. Even worse, when I dug into the actual grants, I found that NIH had spent far less than $5 million.

There are 16 grants listed for 2012 spending (several grants appear twice on the list because they received funding from more than one Institute) for a total of $4,518,182. This is a decrease of $1,827,966 or 28.8% from the 2011 funding. In 2011, ME/CFS was 218th out of 235 disease categories funded by NIH. In 2012, we dropped to 224th place. ….”



The time is NOW!

Of all the issues that we face today, the one issue that has created the most problems are the diverse case definitions associated with our disease. This single issue has severely impacted research, drug development and clinical care and misled the medical community on the very nature of this devastating disease, causing many doctors to not believe that their patients are really sick. Until this issue is addressed, patients will continue to pay the price. This must stop now.

Today, CDC states that there are at least 5 different definitions for “CFS”. Three of these definitions, the Canadian Consensus Criteria, the ME International Consensus Criteria and the Pediatric Criteria require hallmark criteria like PEM/PENE and neurological, immunological and energy production impairments. Unfortunately, two of the most commonly used definitions, Fukuda and Oxford, do not require these hallmark criteria. In fact, Oxford only requires 6 months of disabling fatigue – no other symptom – and allows primary psychiatric disorder.

The result? Myalgic encephalomyelitis, the disease seen in outbreaks throughout the twentieth century and recognized by the World Health Organization in 1969, has disappeared and in its place, we are left with “CFS”, an amorphous umbrella of unrelated fatiguing conditions including, according to the literature, depression, deconditioning, medically unexplained chronic fatigue, and for some researchers and clinicians, fatigue due to “excessive rest” or “false illness beliefs”. In clinical practice, the diagnosis of CFS is given to a heterogeneous mix of patients – those with ME, those with the varied fatiguing conditions listed above and those who were misdiagnosed or whose doctors use the diagnosis of CFS as a catchall for unexplained fatigue. And in 2012, the American Family Physician article proclaimed that Oxford and Fukuda are the appropriate definitions for “CFS” and further stated “[CFS] patients with poor social adjustment, a strong belief in an organic cause for fatigue, or some sort of sickness benefit (i.e., financial incentive) tend to have worse responses to [cognitive behavioral] therapy.”

Exactly what disease are we talking about here?

Patients have paid dearly for the proliferation of these overly broad and non-specific definitions – bedbound or homebound, unable to work or take care of their families, suffering for 10, 20, 30 or more years from the myriad symptoms that plague their bodies, unable to get adequate medical care and ultimately more likely to die prematurely from cancer, cardiovascular disease and suicide.

As Dr. Carruthers stated in the ME International Consensus Criteria, “Research on other fatiguing illnesses, such as cancer and multiple sclerosis, is done on patients who have those diseases. There is a current, urgent need for ME research using patients who actually have ME.” We must have a disease appropriate definition for ME that is separate and distinct from all the other unrelated conditions encompassed by the overly broad, fatigue-focused “CFS” definitions.

To that end, a group of patient organizations and advocates have submitted the letter at this link ( to DHHS asking for DHHS to:

  1. Adopt a disease-appropriate case definition for ME now, utilizing the Canadian Consensus Criteria as recommended by DHHS’ own CFSAC. Train doctors with appropriate medical guidance.
  2. Stop using the terms “CFS” and “Chronic Fatigue Syndrome” along with the non-specific definitions like Fukuda and Oxford and the medical education material based on these definitions.
  3. Manage the adoption of the Canadian Consensus Criteria to ensure that insurance and disability do not lapse and that no patients fall through the cracks.
  4. Fully engage ME stakeholders in the planning and execution of the adoption of the Canadian Consensus Criteria.

You may ask whether we really know enough about the disease or whether we need more study before we change definitions. Certainly, with more study, we can better operationalize the definition and validate biomarkers to make patient diagnostics easier. But in the meantime, we know that PEM/PENE is a hallmark symptom that reflects a distinctive biological pathology and we must utilize a disease definition that requires that symptom.

Some of you may prefer the ME International Consensus Criteria over the Canadian Consensus Criteria. The ME-ICC certainly has some excellent features. But practically, the Canadian Consensus Criteria has been used clinically and in research for a decade. Studies have been done with it. The U.S. government has posted the IACFS/ME Primer, based on the Canadian Consensus Criteria, on DHHS’ Guidelines.Gov. This is more likely to be acceptable to DHHS and is a reasonable first step, especially when considered against the alternative of continuing to use Fukuda while more study is done.

What about dropping the name “CFS”? You may be concerned that this means we will lose the literature base that has provided insights into the pathology of ME. Admittedly, some of the best articles used the term “CFS”. And so do some of the worst. The point is that the literature base is a mess because multiple diverse and unrelated definitions have inexplicably been allowed to use the very same name for years. We all should stop using the term “CFS” because it no longer has any real meaning.

Finally, what about the name ME? Does it really describe the disease? Is there a better name? That is a question that science will need to decide over time, something that has happened in many other diseases. But what is clear is that “chronic fatigue syndrome” will never be an appropriate name and should never have been established as the alternative or synonym for ME.

Patients have borne the brunt of the failure to address the definitional issues for the last thirty years. We cannot wait for more study to finally stop the harm being done to patients, especially given that more study with non-specific definitions will only perpetuate the problem. The time to address this problem is now.

For those of you who wish to sign this letter and become a part of this vital initiative, we will provide a mechanism to do that within a few weeks and will send out additional information at that time.

The letter can be found here:

Additional background: Questions and Answers on this initiative

Answers to specific questions and concerns that patients, carers and advocates have:

Q – We cannot abandon the patients that have been incorrectly given a “CFS” diagnosis.

A – This is very true. It is critical that implementation of this change be carefully managed so that these patients are re-evaluated and given a correct diagnosis. If unexplained conditions remain, it will be necessary to perform the studies needed to understand these conditions and establish more appropriate names and definitions.

Q – We cannot afford to have our disability or insurance impacted.

A – Yes, this is very important. It will be important to have a carefully thought out implementation plan that manages this to ensure that patients do not lose disability or insurance benefits.

Q – The vast majority of the 6000 articles in the literature use the name “CFS”, not “ME. If we stop using the name “CFS”, we will lose all that literature.

A – Currently, when the search term myalgic encephalomyelitis is used, the CFS literature is returned. This will not change. But that literature base contains both articles relevant to ME but also a significant number of articles about “CFS” and child abuse, false illness beliefs, deconditioning, etc. This creates significant confusion for anyone trying to use that literature. For that reason, the non-specific term “CFS” should be abandoned by the U.S. and more specific terms like ME used going forward.

Q – We have more important issues to deal with such as funding, and attracting new doctors and researchers.

A – It is critical that we have more funding but if we don’t fix the definition issue first, we will continue to study the wrong disease and have progress impeded by poor definitions. The resultant confusion will make it difficult to attract young researchers and doctors who will not see career opportunity in “CFS”.

Q – Research centers have recently been established and if we stop using the name “CFS” we will confuse our donors.

A – It is true that a number of research institutes have recently been opened and some of them use the term “”CFS” or even “CF”. But the donors to these institutes today have a personal connection to the disease. They will continue to fund. But attracting additional funders will be negatively impacted by the confusion around the disease. The sooner we can resolve this issue, the better in the long run.

Q – CFS biobanks have been established using Fukuda and we don’t want to lose those samples.

A – The biobanks that have only been characterized by the Fukuda definition could contain a mix of patients with the hallmark criteria of ME and those who do not have these hallmark criteria. Using these mixed samples will continue to confound research. It is important that we have a well-characterized set of samples in the biobank and know which samples are from ME patients.

Q – ME may not be the right name. Shouldn’t we wait for the science to figure out what the right name is?

A – It is possible that with further study, we will determine a better name than ME and it will naturally evolve. But ME, adopted by the World Health Organization in 1969, is the best placeholder until that time and avoids the serious issues caused by the use of the term “CFS”.

Q – The best course is to tighten up the “CFS” definition, not get rid of it. Then we can keep the literature base, the biobanks, etc.

A – There are two problems with this approach. First is the long history of the term “CFS”, which is non-specific and now widely associated with diverse conditions, especially including psychiatric issues. This has severely tainted the term and made it clinically meaningless. Second, the term “CFS” is used for those studying patients that meet Oxford criteria (essentially chronic fatigue) and we have little control over that continued usage.

Q – Lenny Jason recently published a paper that reports that the ME-ICC and the Canadian Consensus Criteria includes more psychiatric co-morbidities than the Fukuda and recommended that more study be done. Does that mean we should wait to recommend any criteria until then?

A – Dr. Jason’s paper did find that the ME-ICC found more psychiatric co-morbidity than Fukuda. But Dr. Jason acknowledged the need for more study because this one used a questionnaire designed for Fukuda CFS, that they were unable to assess one of the key ME-ICC criteria because of data on this criteria was not available. Further, the study did not look at homebound or bedbound patients.

But what is also significant in Dr. Jason’s study is that ME-ICC identified a much tighter group of patients (39 compared to 113 for Fukuda) with more functional impairments and physical, mental and cognitive problems seen in ME-ICC patients than in those meeting the Fukuda criteria.

Clearly additional study is needed to operationalize the definition and to improve how it characterizes the disease, especially around subtypes. But continuing to use the 19-year-old consensus driven Fukuda – which is also not operationalized and does not describe subtypes – in the meantime is not going to advance that knowledge and will only continue to hurt patients.

The Canadian Consensus Criteria has been used clinically and in research for over 10 years and better represents the disease. Using the CCC now will allow us to begin to make forward progress in research and identifying treatments and begin to address the disbelief in the medical community.

Q – Is this the same thing as the Name Change initiative?

A – No. This is first and foremost about the definition being used – adopting a definition that effectively describes the disease and stopping the use of the definition – and name – that have created so much confusion and problems.

Q – Why CCC and not ME-ICC?

A – The CCC has been used clinically and in a number of studies, providing the experiential foundation for its use. It is expected that as additional data is obtained, this definition will evolve. This must be done in partnership with the experts who developed the ME-ICC and the CCC.


With many thanks to Mary D.

CFSAC public comment due May 15th! Speak Up!

Our community usually has common priorities that it would be good for the CFSAC to hear (from as many people as possible).

An obvious one for the May 2013 meeting is thanking the FDA for the recent Drug Development for ME and CFS Public Workshop. FDA modeled engagement and collaboration with us in ways that all of DHHS could emulate.

The agenda (included below) is only an overview of the May 2013 CFSAC agenda.

We do know that the CFSAC will generate a list of high priority recommendations and it would be very helpful for your public comment to include YOUR top 3-5 priorities for the list. Some frequently mentioned priorities (and the recommendations) are as follows:

Holding a stakeholders’ workshop to reach a consensus on case definition. CFSAC recommends that you will promptly convene (by 12/31/12 or as soon as possible thereafter) at least one stakeholders’ (ME/CFS experts, patients, advocates) workshop in consultation with CFSAC members to reach a consensus for a case definition useful for research, diagnosis and treatment of ME/CFS beginning with the 2003 Canadian Consensus Definition for discussion purposes. (10/12)

Three regarding NIH and funding:

NIH should fund ME/CFS research commensurate with the magnitude of the problem, and issue an RFA specifically for ME/CFS. ME/CFS is an illness with enormous economic and human costs. The April 2011 NIH State of Knowledge Workshop identified a number of gaps in what is known about the illness. To address these gaps warrants an interagency effort comprising, but not limited to, NIH,CDC, and AHRQ. Further, the focus should be on interdisciplinary discovery and translational research involving interacting networks of clinical and basic science researchers. Areas to be examined would include the following: identification of patient subsets for detailed phenotyping and targeted therapeutic interventions, biomarker discovery, systems biology approaches and disability assessment. To facilitate the above goal, CFSAC recommends that ME/CFS research receive funding commensurate with the magnitude of the problem and that the NIH (and/or other appropriate agencies) issue an RFA specifically for ME/CFS. (5/11)

Pool resources to create Centers of Excellence, using physical or virtual locations. CFSAC would like to encourage and support the creation of the DHHS Interagency Working Group on Chronic Fatigue Syndrome and ask this group to work together to pool resources that would put into place the “Centers of Excellence” concept that has been recommended repeatedly by this advisory committee. Specifically, CFSAC encourages utilizing HHS agency programs and demonstration projects, available through the various agencies, to develop and coordinate an effort supporting innovative platforms that facilitate evaluation and treatment, research, and public and provider education. These could take the form of appropriately staffed physical locations, or be virtual networks comprising groups of qualified individuals who interact through a variety of electronic media. Outreach and availability to underserved populations, including people who do not have access to expert care, should be a priority in this effort. (11/11)

NIH should issue a $7-10 million RFA for outcomes measures, and biomarker discovery and validation. CFSAC recommends that you instruct the NIH to issue an RFA (funded at the $7-10 million range) for projects to establish outcomes measures for ME/CFS diagnosis, prognosis and treatment which would include but not be limited to biomarker discovery and validation in patients with ME/CFS. (10/12)


Removal of the CDC Toolkit. CFSAC asks that the Centers for Disease Control and Prevention (CDC) remove the CFS Toolkit (both English and Spanish versions) from the CDC website. (6/12)


Additional background on the CFSAC recommendations can be found here –

If you want to give public comment, you must register ( )

and send public comment to by May 15 if you want it to be on the public record.


CFSAC Spring 2013 Meeting

May 22 – 23, 2013

AGENDA OVERVIEW (note – this is not the full detailed agenda, just an overview)

May 22, 2013

9:00 am – 5:00 pm

·        Call to order CFSAC Chair

·        Welcome – Principal Deputy Assistant Secretary for Health

·        Remarks from the CFSAC Chair

·        Agency Updates – CDC, CMS, HRSA, SSA

·        Public Comment

·        Presentation – Process for CMS determination of coverage for tests and treatments

·        Committee Discussion


May 23, 2013

9:00 am – 5:00 pm

·        Call to order CFSAC Chair

·        Agency Updates – AHRQ, NIH, FDA

·        Presentation – Information about the Affordable Care Act and the Health Insurance Marketplace

·        Public Comment

·        Presentation – How to get more clinicians involved in diagnosing and treating patients with ME/CFS

·        Committee Discussion


Niagara Falls in Blue, Purple and Green on May 12th, 2013

Niagara Falls, May 12, 2013

The Niagara Parks Commission of Niagara Falls Canada will illuminate the falls:

in blue from 9:45 to 10:00 PM EST representing Myalgic Encephalomyelitis and

in purple from 10:15 to 10:30 PM EST representing Fibromyalgia

in green from 11:00-11:15 PM EST representing MCS

May 12
9:45 – 10:00
10:15 – 10:30
11:00 – 11:15
International Awareness Day for
Myalgic Encephalomyelitis,
& Multiple Chemical Sensitivities


You can watch the falls live on videocam:

Thanks to the volunteers who organized this and spread the word about it!