Now that CFSAC's over, what should we do?

[justinreilly]

I think that it would be helpful if everyone physically boycotted the meeting. We would just send in the usual written testimony and instead of in-person testimony, people could send in DVDs or testify by phone. This would accomplish almost all of the good of testifying in person; and would also have the benefits of sending a protest message and save people the considerable resources it takes to attend the meetings in person. I think those resources could be much better spent on additional advocacy.

Even if there isn't a formal coordinated physical boycott, I would still urge individual advocates to testify by DVD or phone and put the saved resources into more advocacy. Maximizing our scarce resources is extremely important.

 

[taniaaust1]

None of the Govt orgs are really listening to CFSAC, much less working with them, so nothing would be lost. A lot could be gained. Media won't be interested unless something interesting happens such as the Committee "rebeling" and shaming the agencies esp CDC.

I doubt even that would bring any media interest or enough to bring in any changes at all, we'd be lucky to just get one news report on it saying we werent happy.

Something which is quite big which could be lost is "hope". At least while they are talking and there is some communication going on.. there is hope of change.

Maybe other tactics need to be being used beyond that. I personally think other things need to be done if we want to have change.

 

[justinreilly]

I doubt even that would bring any media interest or enough to bring in any changes at all, we'd be lucky to just get one news report on it saying we werent happy.

Something which is quite big which could be lost is "hope". At least while they are talking and there is some communication going on.. there is hope of change.

Maybe other tactics need to be being used beyond that. I personally think other things need to be done if we want to have change.

We don't have much influence on what they do so maybe it's almost a moot point to discuss it.

however, i think it would generate some minor media interest at least. even if not, it would be one more very persuasive fact to marshall in an argument that huge change is needed. it would also be one more attention-getting fact that would make for an over-all attention-getting future media report about the whole messed up situation. every little bit helps.

as many of us have said, enough of the same old, same old soberly giving the facts to the government. We've done it a million times and it hasn't worked for decades. We need to make as many attention getting splashes as possible to get any attention and thus any help. HHS will NEVER HELP US UNLESS FORCED to by embarrassing public and Congressional attention

Tania, you said you think that other things need to be done. What do you suggest?

 

[justinreilly]

The most productive thing we could do now (and should have done a decade ago) is to peacefully prevent the next facade (meeting) from taking place. I suspect that the unprepared and disinterested committee members would actually be relieved due to the high likelihood that if the meeting were to go forward they would embarrass themselves once again.

A vocal/non-violent group chained to the doors of the building and filmed by the media would be a good start.

Time to save the date!

I think an even more effective use of this type of technique would be at HHS or CDC headquarters. I have a beef with CFSAC for not being more forceful, but the main problem is of course at HHS and CDC not listening to CFSAC and continuing to persecute us. The huge drawback with this is that people will be arrested and this would be very hard on their health. I for one, in my state of health, am not willing to subject myself to such stress. Perhaps there are some who are healthy enough to go thru this and would be willing to (but it might be hard to find them). It might be worth doing if we really got organized, but people would really have to commit to helping out, organizing the media, lining up lawyers, etc. I would commit to helping out as best I could.

I think protests such as this would be a more impactful way to use the resources many would normally devote to getting to the CFSAC meeting.

Maybe this is a good idea or maybe there is another high-impact protest we could do with less chance of damaging our health; maybe not. We need this type of protest- chaining ourselves to CDC doors, street theatre with fake blood in front of CDC or HHS, something that says 'We are NOT going to go to the back of the bus anymore.' We are going to have to up the ante to get any help.

 

[Ember]

I understand and agree with the intent of this recommendation but struggle with the specific wording...

I also can't reveal some conversations we have had with some of the ICC scientists. Marly Silverman was at the IACFS/ME Conference and gave a presentation on the Coalition's efforts.

Regardless of what “some of the ICC scientists” may have said in private, the ICC, CDC, CFSAC, NCHS and many patients have not yet agreed with the Coalition's plan to do away with CFS and replace it with ME. And that plan is dividing us.

Dr. Unger told us at the November CFSAC meeting that the CDC has heard about our disagreement:

I have gotten lots of communication from people saying that CFS is different from ME. I have got people that insist that it is the same thing. I think that there is disagreement. There is confusion in the field about whether it should be the same thing, whether it should be two things, whether it should be a hyphen name. Until there is clarity of what we are talking about, we cannot give good guidance. There has to be more consensuses among experts. Hopefully getting our contract started will be the beginning of the dialogue. There are legitimate points to be made on both sides. I do not have the answer yet.

Days later, David Tuller quoted Dr. Unger:

Opinions of advocates, clinicians and researchers remain divided about whether CFS and ME are the same or different entities. However, we are following the discussions with interest and would consider any consensus that is reached by patient groups and the scientific community going forward.

With no agreement among patients, between patients and the scientific community, and among the experts, Dr. Lee quickly dismissed any idea of calling CFS “ME” at last month's CFSAC meeting. CFSAC supported the Coalition's Option 1 in November “because CFS includes both viral and non‐viral triggers.” At that time, CFSAC noted that the science is not yet conclusive concerning the relationship between CFS, ME and PVFS:

Current scientific evidence would indicate there are more similarities between the three entities than there are differences. Whether they are synonyms for the same underlying concept, disease entities and sub‐entities, or merely the best coding guess is unclear. In reality, any or all of the above may be correct. While the relationship between CFS, B(ME) and PVFS is not stated, that they are grouped together in ICD 10 (WHO) would indicate some rationale for a connection. Our understanding is that this association will be maintained in the ICD 11, which may also include further description of the relationship.

The Joint Request for Action complains that NCHS has not yet made a crucial determination in the Coalition's favour:

The Coalition 4 ME/CFS submitted a proposal to NCHS in July 2011 to request CFS be reclassified. To date, NCHS has not made the change, communicated their decision or responded to queries on the status. It is crucial that NCHS ensures that the ICD-10-CM classification of CFS is aligned with WHO's neurological classification before ICD-10-CM rolls out.

Yet the Coalition may have undermined its own proposal.

The seeds of confusion were sown shortly after the ME-ICC announcement on July 20, 2011, within days of the Coalition's having submitted its NCHS proposal. The Coalition quickly updated its proposal to include the ICC. Based on its misreading of the ICC, the Coalition stated in its September NCHS presentation, “When properly defined, CFS is the same as ME.” Kim McCleary also mistook the ICC initially to mean that “ME” should be used as a replacement for CFS. Cort posted (and quickly removed) a controversial article repeating these misinterpretations. Despite his intentions, that article was never revised and reposted after the IACFS/ME Conference.

Marly Silverman's conference presentation on the Coalition's efforts was planned for a lunch hour. Scheduled at 8:30 on Saturday morning, Dr. Carruthers' ICC presentation gave her little or no time for any revision based on new insights. Though Fred Friedberg had allowed time for Q and A about the new criteria and expected a lively session, none was reported.

Had the ICC presentation been digested by patient advocates last September, it might have given them pause. The ICC does not support the Coalition's statement that CFS is the same as ME. US subject-matter experts, if contacted by NCHS, may not contradict the ICC to agree with the Coalition. Given the paucity of ME subject-matter experts in the US, NCHS may well consider statements made by international experts, statements that contradict the Coalition. The Coalition may then have inadvertently undermined its own proposal. The alternate NCHS proposal is favoured, of course, by the CDC.

Should the Coalition defer, until the science has spoken, its plan to “phase away the awful 'CFS' label and diagnostic criteria, replacing it with ME” and agree instead that ME is a distinct and separate subset of CFS, that decision would both clarify its reclassification request and allow patients to speak with one voice again. If there's one disease or syndrome with subsets, then pending any retraction of CFS definitions, that disease or syndrome is currently CFS and the separate subset is ME.

The Joint Request for Actions asks for "a significant, sustained and coordinated commitment from DHHS to address...key priorities: (1) Resolve the definition, name and classification confusion.” By taking a position consistent with the ICC, the Coalition would help to resolve confusion born of its own creation.

(Edit: Note again that the lead authors consider the CCC to be an ME definition.)

 

[CJB]

I thought of something simple and concrete that every can do right now about the CFSAC. At the June meeting, Dr. Lee said there would be opportunity for public comment on the draft revised charter. She did not provide any specifics about how that comment opportunity would be provided. I sent her the email below this evening asking for more information. If you are so inclined, you could send a similar email. Maybe if multiple people ask, we will get info on the process. There isn't much time before the charter expired on September 5th.

To: OS OPHS CFSAC ( HHS/ OPHS) <cfsac@hhs.gov>
Sent: Thursday, June 28, 2012 8:01 PM
Subject: Charter revision
Dr. Lee,
At the CFSAC meeting on June 14th, you indicated that there would be an opportunity for public comment on the charter revisions for the committee. That opportunity would be most welcome!
Given the charter expiration deadline of September 5, 2012, I wondered if there was any update on the process for public comment? In order for the public to give the best feedback on the revised charter, it will be helpful to ensure there is adequate time before the end of August. Given the cognitive difficulties affecting many patients, we will need several weeks to provide high quality responses. There are many organizations and individuals who can help publicize the comment process as well, hopefully ensuring a broad based response.
I would appreciate any update you can provide on the comment process. Thanks in advance.
Cheers,
Jennie Spotila

I just received the following reply to my e-mail on the subject:

OS OPHS CFSAC (HHS/OPHS) CFSAC@hhs.gov​

4:42 PM (46 minutes ago)

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​

to me

Mr./Ms. B
It turns out that Dr. Lee was mistaken when she gave the impression that public comment was part of the usual process for charter revision. In fact revision of the charter is an internal HHS process. The CFSAC team makes the proposed revisions, and the revised charter goes to the HHS Secretary for approval. There are deadlines which must be met as the CFSAC charter expires in Sept.

That said, we welcome your comments and suggestions, provided to us via cfsac@hhs.gov. If you are interested, please get the comments to us in the next 2 weeks so that we can meet the deadlines. The existing charter can be read athttp://www.hhs.gov/advcomcfs/charter/index.html .

Our apologies for the misleading statement made at the June meeting about charter revision.

The CFSAC Support Team
http://www.hhs.gov/advcomcfs/index.html

Sign up for the CFSAC listserv to receive the latest updates about CFSAC:
http://www.hhs.gov/advcomcfs/cfsac_email_list.html

 

[Ember]

I also can't reveal some conversations we have had with some of the ICC scientists....
I am afraid we are just going to have to disagree for now.

Last November, Tina, you invited me to get public clarification from the lead author of the ICC concerning the relationship between ME (ICC) and CFS (Fukuda). Now, nearly early eight months later, you indicate that Dr. Carruthers' clarification was rejected by advocates in favour of undisclosed comments made by unnamed ICC scientists in private.

Surely Dr. Carruthers' presentation to the MEFM Society of BC, Dr. Broderick's letter in the Journal of Internal Medicine, and Dr. Carruthers' article in the Journal of IiME carry more weight than the private, confidential exchanges to which you allude. Last December, the ICC panel advised:

Unfortunately, the name ‘CFS’ and its hybrids ‘ME/CFS’ and ‘CFS/ME’ have been used to refer to both ME and general chronic fatigue. The best way to end the resulting confusion is to only use the name ME for those who meet the more restrictive ICC criteria for this very serious disease, which is consistent with the WHO ICD neurological classification (emphasis added).

Patients deserve this expert guidance. Pernicious disagreements over ME and CFS serve nobody.

 

[jspotila]

Six advocates and myself have sent a letter to Assistant Secretary Koh regarding the vacancy left by Dr. Rose and the charter renewal. You can read the full letter on my blog. We ask Dr. Koh to:

• Immediately issue a call for nominations to fill Dr. Rose's slot or, failing that, to draw from the public nominations submitted in 2011.
• Fill Dr. Rose's vacancy with a research scientist in order to maintain the charter-mandated balance.
• We oppose the addition of non-voting organization representatives, and instead recommend the addition of additional voting slots for individuals with experience in the issues affecting people with ME/CFS.

The deadline for charter input is July 31st (two weeks from the date of CFSAC's email asking for input). I hope others will be able to submit input on the charter as well!

 

[Ember]

People in the UK want CFS separated from ME, because they believe the CFS label and made up criteria have corrupted the original disease.... In the US, we want CFS absorbed into ME...

I really think the answer is to have one disease name, with a spectrum and levels of severity.

By taking the position that “CFS is the same as ME” and advocating for the hybrid name ME/CFS, the Coalition4ME/CFS (including PR) has aligned itself with the NICE Guidelines instead of honouring its commitment to “advocate for the adoption of the Canadian Consensus Document.”

The NICE Guidelines follow the CMO 2002 recommendation “that the composite term CFS/ME is used and that it is considered as one condition or a spectrum of disease.” The WHO approach proved too contentious for the Guideline Development Group:

The World Health Organization (WHO) classifies CFS/ME as a
neurological illness (G93.3), and some members of the Guideline Development
Group (GDG) felt that, until research further identifies its aetiology and
pathogenesis, the guideline should recognise this classification. Others felt that
to do so did not reflect the nature of the illness, and risked restricting research
into the causes, mechanisms and future treatments for CFS/ME.

By contrast, the CCC (despite its ME/CFS label) separates ME from CFS: ”The results of Jason et al’s studies have confirmed that the Canadian Definition of ME/CFS had clearly separated cases who have ME...from those who have CFS....” The ICC states that ME patients “should be removed from the Reeves empirical criteria and the National Institute for Clinical Excellence (NICE) criteria for chronic fatigue syndrome.”

With the welfare of so many sick people at stake, shouldn't the Coalition be prepared to support its key statements with evidence?

 

[Ember]

For my disease, I want a better definition and a better name. But I don't want to end up with a label of a disease in which very little is known because very little research has been done. Give me the good findings in the CFS research, you can keep the name and the criteria.

Changing the name of a disease or syndrome doesn't change the research retroactively, Tina. If it used a CFS (Fukuda) cohort, then it remains CFS research. ME research uses an ME cohort, and both the CCC and ICC define ME cohorts. Again I rely on Dr. Carruthers: ”The results of Jason et al’s studies have confirmed that the Canadian Definition...had clearly separated cases who have ME...from those who have CFS....”

Cort reports that the latest Program Announcement for the NIH has for the first time left the definition open. Advocates should be pushing now for CCC and ICC cohorts to be used in research. The Coalition has committed to “advocate for the adoption of the Canadian Consensus Document.”