Another CFS Advisory Committee meeting is upon us. The webinar meeting will be held on June 29th and 30th. And as has been the case in the past, the federal approach to the Committee appears lackadaisical. This bare minimum effort is most evident in the failure to fully staff the committee.
As I noted last December, CFSAC currently has only seven of thirteen members. That’s because the terms of Ms. Collier, Dr. Corbin, Dr. Casillas, and Dr. Fletcher all expired in 2016. In addition, the charter renewed in September 2016 added two new spots on the roster. So there are six empty chairs.
But this is actually not the worst case scenario. Dr. Sue Levine, Dr. Dane Cook, and Dr. Gary Kaplan all reached the end of their terms in May 2017, but they have been extended until November 2017. Clearly this was a last ditch effort to maintain the bare minimum quorum (and save face). Without extension of those terms, CFSAC would have been down to only four of thirteen members.
What about new members? There have been two calls for nominations, one in April 2016 and another in October 2016. Back in September, I reported that some nominations were working their way through the system. Why aren’t any of those nominations approved and ready to go? Beats me. Like I said, lackadaisical.
But new developments show it is worse than that. The four nominations received by CFSAC in response to the April 2016 call were Dr. Cindy Bateman, Dr. Nancy Klimas, Dr. Lenny Jason, and Mary Dimmock. I learned this through a FOIA request. But it turns out Dr. Ken Friedman also submitted a nomination last April. After I reported those four names in September, Ken contacted me and provided proof that he had emailed his nomination. But that information was not included in the FOIA response.
We’ve seen information go missing before, so I filed a new request asking for production of whatever HHS had received from Ken, along with any other nominations that may have slipped through the cracks.
I received a phone call from the HHS FOIA office this month. Despite the fact that I provided proof that Ken submitted his nomination by email, and despite the fact that HHS accepts that proof, there is no record anywhere of his nomination. The FOIA Officer told me that an extensive search was made, including the involvement of IT personnel, but no record of the email exists on government servers. And no explanation could be offered.
The FOIA Officer also told me that to remedy the situation, Ken would be invited by telephone to resubmit his nomination. But when I checked with Ken . . . . you guessed it. He had not received the phone call (he has since resubmitted his nomination anyway).
In a move that can only be described as placating, the FOIA Officer also told me that the nomination process was being changed. From now on, nominees will be told to contact the office if they do not receive confirmation within 24 hours of sending nominations. If they do not receive that confirmation, they will be given another person’s email address for their submissions, with confirmation to follow.
This “improved” process does not make up for the erasure of Ken’s nomination, nor does it guarantee that future nominations won’t digitally vaporize.
And the real question is: why is it taking more than a year to appoint new members to the committee? CFSAC cannot function with only half a roster. Sure, the committee has a quorum but that’s it. Working groups are hamstrung by a lack of committee members, as is the work of formulating and approving recommendations.
So why are we in this situation? Why do we have only half a committee, while nominations are lost or languish in the approval process? Because business as usual for the federal management of CFSAC is like a sloth working at the DMV:
Why indeed!!
Given the lengthy history of negligence (lack of effort on the part of the government, lack of funding, etc. ), and the vast amount of work that needs to be done in this field, delays such as not filling the CFSAC roster with experts is unconscionable!
And the lackadaisical manner with which government agencies seem to treat everything to do with this disease is appalling!
They should ask David Tuller to be on the committee (or someone should ask him if he would volunteer). I just realized recently he has a PhD in Public Health from UC Berkeley – which should be credential enough.
The government agencies are entrenching for the long run with this administration, making no commitments to the public, their real employer, because of the situation. I’m surprised any of them are functional (except for the supporters, of course).
This happened at a VERY bad time for ME/CFS research.
I wish French president Emmanuel Macron would invite ME/CFS researchers to move to France, as he did the climate scientists. And that they would.
You’re entitled to nominate him.
Given the feelings about PWME at NIH that were unveiled by Jeannette Burmeister’s successful FOIA suit in Federal court it seems obvious that Dr. Friedman’s application was attended to expeditiously and directed to the proverbial “circular file.” Meanwhile, persons who know as much about ME and biomedical science as do Drs Bateman, Jason, Klimas and Mme. Dimmock represent serious threats to the NIH philosophy of non-transparency re ME/”cfs” to which, as documented by J. Burmeister, Esq., certain squads of federal functionaries have long been dedicated.
References:
Hammerstein, Oscar: “You have to be carefully taught to hate.” South Pacific. New York, 1947
Freud, Sigmund. “No such thing as accidentally.” Variously, Vienna, long time ago.
You’re doing a great job as always, Jennie! Thank you, so soo much 🙂
The whole thing is a sham (except for the sincere efforts of the voting and non-voting organizational members). Whoever – singular or plural – has charge of CFSAC at the HHS cares not one whit about it, or the ME patients. Why don’t we write a petition to the Assistant Secretary and demand that it be disbanded since it is a complete pretense of HHS’ interest in the disease? Let’s not pretend (or let them pretend any longer) that CFSAC is the voice of the patients and the route to taking our case to the various HHS departments, through the ex-officios. That simply gives them an official excuse for not listening to us through any other channels. And this argument, made by some in the community, that it is our only official means of communicating with the HHS simply continues the charade; we do not lose by boycotting these meetings or losing CFSAC. It is a sick joke.
Thanks, Jennie, for your hard work on this and your report here.
It is same old, same old story.
Should we even bother trying to listen to the meetings?
Are you going to do that?
It’s a lot of time and if it is meaningless, then it’s a waste of my time to me.
Yes, we should listen to the meetings! Transparency is a requisite for accountability. People should listen, and pay attention to what the agencies and federal officials say. As advocates, we have to know what is going on (in agencies and at CFSAC) in order to act from a position of knowledge.
I agree – and we must rebel and respond, too!
I’ll tell you why – it’s real simple: it’s because they are relentlessly and doggedly committed to PACE and Wallit, Shorter, Saligan and Wessely ideology.
Without beginning to fight this war at the beginning – unless our starting point is to wholly eradicate PACE, the Wessely school of thought, and Wallitt principles – we’re all just playing by their Playbook and swimming against the tide.
If you’re doing anything other than fighting PACE, then you are effectively wasting your time.
I should clarify: if you’re doing anything other than fighting the world government – the deep state – the iron triangle – then you’re playing by their handbook.
It’s analogous to the revolutionaries enacting a Constitution and appointing a President before we won the War against the Monarchy; had we not won that war, things would have been very, very different, and no amount of Constitution construction would have been efficacious (and would likely have gotten you killed).
In other words, find creative ways to fight the government on the substantive issues without helping them to obfuscate. We must use our critical thinking skills to out them, and save ourselves in the process.
By all means do not fail to attend webinars, conferences, and/or any events the government hosts, but do not go along like servile puppy dogs with their agenda. Our agenda is to tear down the obstacles – the systemic institutionalization of indoctrination against ME – that allow the world to mistreat and abuse us, in order to create a world where ME patients are treated equal to other chronic complex disease patient communities.
I recently submitted my responses to the OS OPHS CFSAC (HHS/OPHS) – I said I wish my doctors knew about the insidiously evil nature of PACE/Wessely/Wallitt, etc. The HHS, NIH, CDC, NHS are institutions staffed with two-faced liars, and so at this moment in time, responding the way they want us to is an exercise in futility. To be telling the government what we wish our doctors in our local communities knew about our disease is nonsense: they don’t care about anything but what the government says, and the government says “PACE.” It’s putting the cart before the horse, and it never works in our favor.
I received a reply from the HHS that my submitted responses were rejected.
Jennie, I’m not well enough to call in for the CFSAC meeting. Can I just submit written comments (and if so, will my comments and full name be made public somewhere) or do I have to submit my comments through the questionnaire on Dr. Bateman’s website to have my input considered? https://batemanhornecenter.org/cfsac-education-workgroups/ Thank you.
Yes, you can submit comments directly. Send them to the CFSAC email cfsac@hhs.gov. Here is additional information about submitting written testimony, including anonymity:
Individuals who would like for their testimony to be provided to the Committee members should submit a copy of the testimony prior to the meeting. It is preferred, but not required, that the submitted testimony be prepared in digital format and typed using a 12-pitch font. Copies of the written comment must not exceed 5 single-space pages, and it is preferred, but not required that the document be prepared in the MS Word format. Please note that PDF files, handwritten notes, charts, and photographs cannot be accepted. Materials submitted should not include sensitive personal information, such as social security number, birthdates, driver’s license number, passport number, financial account number, or credit or debit card number. If you wish to remain anonymous the document must specify this.
https://www.federalregister.gov/documents/2017/03/22/2017-05641/meeting-of-the-chronic-fatigue-syndrome-advisory-committee
No deadline is specified, but time is tight to get comments in for the committee to read.
June 26, 2017
Dear CFSAC Members,
Below are my answers to the CFSAC questions regarding medical education for the June 2017 CFSAC meeting. I can’t keep an appointment and I only have limited speaking ability so I am submitting my response in writing and not requesting a speaking time. Please only use my first name and last initial in public disclosure. Thank you.
Question 1. What are the three most important things you want physicians to know about your disease?
1. Failure to recognize ME/CFS as a biological disease is malpractice for which they will be held accountable.
2. Unless doctors follow the RESEARCH, it is beyond their ability as doctors to see us as patients. We need our own experts; who we don’t have to “educate” and “train” to take care of us. Doctors should realize this and be professionally raising awareness to this fact. They should be ADVOCATING for us to get the EXPERT CARE that we truly require in ALL medical settings; offices, hospitals, home care, nursing homes.
3. Patients shouldn’t be crashing and some deteriorating, having more of their lives stolen, in attempts to get medical care and disability benefits. I want doctors to know the following and advocate it:
Telemedicine or home visits for those unable to participate in clinical trials/treatment in person and outreach to underserved communities are needed. New technologies to address underserved populations and unmet needs (e.g., mobile technology, online tracking tools) should be developed and employed to measure progress and to enable communication, especially for those who are not served in the clinic setting. (NIH Pathways To Prevention Workshop: Advancing the Research on ME/CFS, page 13).
Questions 2-4 regarding the IOM and P2P Reports as well as Patient Care:
The IOM and P2P reports haven’t helped me. I have no medical care or dental care as my condition continues to worsen. Nor have the IOM and P2P reports helped a friend of mine, who can still access minimal medical care and dental care (dental taking over a year and still in process), with great difficulty through providers who are hostile, or who lack knowledge of ME/CFS, and lastly, with insurance policy juggling. Doctors and dentists don’t know that ME/CFS is a disease and they go off on their own tangents. They don’t listen to us if it doesn’t fit their cookbook medicine. They don’t want to or have time to learn about ME/CFS. We may as well be talking to the walls which continually keep falling on us burying us along with this disease. They don’t know what the IOM and P2P reports are about. Furthermore, why would they even know when the government websites are a hodgepodge of information, misinformation, harmful information and contradictory information that makes no sense? Doctors don’t know about the bogus PACE trial, what is going on in real biomedical research, and that the government won’t fund our disease and has been misrepresenting and stigmatizing patients for decades. They don’t understand and/or care that they don’t help us, that they make some of us crash and suffer trying to get help, that some patients are confined to their homes and can’t get help, or that some of us die. They practice in their niches with blinders on perpetuating our never ending lack of care. The neglect, abuse, harm, trivialization and mischaracterization by professionals, family members, the media and society who don’t understand this disease and refuse to accept our medical needs is unrelenting. We desperately need ME/CFS experts taking care of us, writing up our disability reports, contacting and/or filing complaints against abusive providers or caretakers where appropriate and we need an overhaul in ME/CFS disability evaluation.
I have been sick since 1983, when I had mono and a severe strep throat at the same time. I’m a severe, bedridden ME/CFS patient trying not to become very severe. I continually inquire about medical care through email or someone verbally inquires for me. I can’t find appropriate medical care and the minimal care that I once had, I no longer have as my condition has worsened over the years. Since becoming bedridden, I have only relied on an ambulance and the emergency room, where, in the ambulance and ER, they had no understanding of ME/CFS, wouldn’t listen to my needs, answer or get answers to my questions, fought with me (in the ambulance) and caused me a great deal of needless suffering and harm. I only went out of desperation because I couldn’t breathe. I also had severe chest pain radiating down my arm and up my neck into my head. I had (still have?) pericarditis. I was too crashed and ill for follow up care and I had to forgo medication that I was given in the hospital and supposed to take to help me breathe because my doctor wouldn’t call in the prescription without seeing me even though he had my hospital records. The ER doesn’t write prescriptions and gave me a limited amount of medication to leave with. I am no longer a patient in any office. As I’ve said, inquiries to try to get medical care have all been fruitless and I have no faith hospital care has changed either. Put another way, I can’t take any more harm from trying to get care; I’m too ill now. It’s an inhumane and immoral currency. (For more see my 2016 NIH RFI Patient Response bottom of p.127; ER experience p.131.)
I’m bedridden in a darkened room, emaciated, and I can’t cook or take care of myself. I am very cognitively impaired. I’m in constant pain, SUFFER from chronic migraines, which were never controlled by prescription medications I’ve tried and my migraines can be accompanied by extensive vomiting. I have fibromyalgia, vertigo, numerous allergies, trouble breathing and a long list of other symptoms. I can only eat a few foods, which take me all day to eat, a little at a time, and I drink water. I’m not emaciated from lack of eating. I can only speak a little for brief amounts of time. I can’t follow a conversation and I get confused and forgetful very easily.
My caretakers are all disabled themselves and two of them are also elderly; one of whom was just released from the hospital and into a nursing home for the next month and the other who is home now still recovering from the 2nd of 3 needed surgeries. My caretakers need caretakers and my primary caretaker is severely ill and is being harmed having to take care of me. The only other help we have is from an elderly neighbor who is also taking care of his terminally ill wife. Almost everyone in my neighborhood is elderly; they’re people my parents went to school with.
My disability case is under review again and has been for over a year. I’m not able to reprove what’s already been proven in decade’s worth of records. Every month I fear my check won’t come. I further fear what will happen to me when one of my parents dies. I fear losing the place I make my home now and the things that I still have that remind me of who I was. I’ve already lost my marriage and the house that I used to own as well as many of my belongings over the years as I’ve been forced to move repeatedly, finally moving into an apartment in my parent’s house. So many people are in situations that never should have happened and keep on happening because the message about ME/CFS isn’t getting out fast enough and accurately enough. This shouldn’t be my life. I should have been able to finish graduate school at least and be living on that salary not the disability I started getting in 2003 that’s less than half the minimum wage for my state. My last income when I was trying to work part time in 1990 was more than double the minimum wage at that time with full medical and dental care. This was when I was in and out of college and in and out of jobs doing my best to do what I could when I thought I could try to do something. I shouldn’t have been trying to do so much. There should have been care and accommodations and RESEARCH. I should have my own family now and be sending the children that I never got to have off to college. I should be surrounded by people my own age and helping my elderly parents in their time of need as they’ve helped me for so many years. My life should be full of happy memories and happy times instead of memories of struggle and memories of turning myself and my life inside out and upside down trying to find help and trying everything that I could to find a solution to this disease. I shouldn’t be left in isolation to have to continually fight and struggle like this with no safety and no ability to plan for the future which from here appears frightening. The worst part is that I fear that one more large crash or time will cause me to become very severe and after already suffering for decades, I can’t live like that.
Desperately (and in tears),
Laurie P.
Oh Laurie, I send you gentle hugs and strength. Thank you for using your precious energy to send such a moving comment to CFSAC. I hope every single member reads it, and I hope it motivates action. ((hug))
Great comments Laurie – and may God bless and keep you♥
I will follow suit and post my comments here, too.
Jennie, after I read your story about how nominations were ignored/disappeared, I Cc’d them to you, and also to David Tuller, OMF, IiME, etc. I received a wonderful response from OMF. I received a “rejection” of my email response from OS OPHS CFSAC/HHS (maybe they have it, maybe they don’t; at least I know Jennie from the block has it!).
“Dear Concerned members of the ME community —
Please scroll down for my responses to the OS OPHS CFSAC questions, below.
‘On Jun 15, 2017, at 6:46 AM, OS OPHS CFSAC (HHS/OPHS) wrote:
Good morning. The Medical Education workgroup has revised question one below and added a fifth question for the general public.’
SCIENTIFIC MISCONDUCT
‘1. What are the three most important things you want your physician and other healthcare providers ( nurse practitioner, physician assistant, registered nurse) to know about your disease?’
The three most important things I want my physician and other healthcare providers to know about my disease are listed as follows:
1) There must be an active repudiation effort of the unethical principles of Simon Wessely ideology and the dangerous PACE protocols. The medical community must divorce themselves entirely from these and seek to reeducate themselves using legitimate scientific literature.
This will result in the desired effect of the medical community’s immediate cessation of the abuse of the ME patient community, and stimulate them as a whole to begin to determine how best to treat ME patients with the same respect, dignity, and medical attention they afford to other chronic complex disease patient communities.
2) The unethical principles of the Simon Wessely school of thought and the dangerous PACE protocols of GET, and any and all source citations thereof, must be stricken and never referenced; any and all advocates of these must be repudiated by all stakeholders to achieve optimum medical community reeducation and patient medical care.
Promotion of PACE’s GET principles are dangerous to both the patient and the medical community, and are unconscionable and unethical. GET creates the possibility of illness escalation, permanent incapacitation, or even death, and for medical professionals GET recommendations create conditions of medical malpractice.
3) The unethical principles of the Simon Wessely school of thought and the dangerous PACE protocols of CBT, and any and all source citations thereof, must be stricken and never referenced; any and all advocates of these must be repudiated by all stakeholders to achieve optimum medical community reeducation and patient medical care.
Infliction of emotional distress upon the ME patient community using PACE’s and Simon Wessely’s CBT principles is unconscionable and unethical. A medical professional who outwardly displays knowledge of genuine ME scientific findings, will instinctually care for a patient with any level of severity of ME.
Appropriate medical attention will serve to immediately normalize ME patients’ emotional responses to appropriately fit the disease state.
Active eradication of the unethical principles of the Simon Wessely school of thought and the dangerous PACE Trial recommendations, coupled with efforts to become ME literate, will cause the medical community’s response to experience swift self-correction.
‘2. Since P2P and IOM reports, have you found the access to clinical care easier, harder or about the same?’
Since the P2P and IOM reports, I have found the access to clinical care exactly the same:
Non-existent and abusive due to the scientific misconduct of the PACE Trials and the abusive Wessely School indoctrination campaign.
No one legitimate medical professional — other than get-rich-quick quacks — cares about ME patients. ME patients are consistently reviled and are the laughing stock of the medical community.
With the unethical principles of the Simon Wessely school of thought and PACE protocols as the intact guiding principles for ME, possession of an MD is a license to openly exploit the ME community.
The manner in which the medical community comports itself is unethical and amounts to malpractice, and until the day all stakeholders unite to legitimatize this disease, abusive practices will continue to be self-perpetuating.
‘3. Do you believe that the physicians you’re seeing are interested in learning about ME/CFS?’
The physicians I see are not even remotely interested in learning about ME/CFS.
With the unethical principles of the Wessely school of thought and dangerous PACE protocols as the intact guiding principles for ME, the physicians I see could not care less about me and my phony baloney disease.
The scientific misconduct of the PACE Trials and the unethical principles of the Wessely school indoctrination campaign uninterruptedly and wholly perverts the medical community’s treatment of the ME patient community.
‘4. Do you believe the attitude has changed since the P2P and IOM reports?’
The attitude regarding the P2P and IOM reports has not changed the medical community’s attitude in my city: there is not a single legitimate medical professional in Phoenix who is interested in reviewing the P2P or IOM reports due to the systemic institutionalization of the dangerous PACE Trial protocols and the unethical principles of the Wessely School campaign indoctrination efforts.
The proactive printing and mailing of the reports to legitimate medical professionals provokes insults and derogatory treatment — including cancellation of appointments and/or the complete discharge — of PWME.
‘5. Do you believe that social workers, psychologists, and/or psychiatrists are interested in learning about ME/CFS? If yes, what specifically would they be interested in learning about?’
Social workers, psychologists, and/or psychiatrists are not interested in learning about ME/CFS. At this point in time it is a step too far to ask what the psych. community would be interested in learning about, when it will take a generation to discharge the insidious systemic institutionalization of abuse inflicted by psych. community propaganda, and the entire medical community as a whole.
Currently they are solely interested in the continued promotion of dangerous PACE Trial protocols and the unethical principles of Wessely propaganda, which allows them to exploit, abuse and injure PWME with impunity, collect payment, and secure recurring consumer status of the ME community.
Only until the government stands together with ME stakeholders in a united front to recognize authentic ME science to legitimatize this disease, and the medical community is accurately and appropriately reeducated, will social workers, psychologists and/or psychiatrists be interested in learning about ME.
The desired result will only be secondary to debriefing and disabusing them of current prejudicial PACE/Wessely indoctrination practices.
Jan L. Wade, Attorney at Law
Phoenix, Arizona”