Don’t Silence Yourself

On May 5th, the IOM panel creating new diagnostic criteria for ME/CFS will hold its second public meeting. The only way you can provide input is by submitting written comments, unless you are an invited speaker. I’m here to plead with you to send your comments to the panel.

black-tape-mouth-shut-no-speaking-700x45_660There’s been another round of the “should we speak or stay silent” debate about this meeting, catalyzed by Eileen Holderman’s public refusal of an invitation to speak. Ultimately, everyone has to do what they believe is right. But as I have said before, I believe the risk of staying silent is simply too great.

Some advocates are in favor of boycotting the IOM meeting and refusing to answer the questions they have posed to the patient community. Their argument is that patient input makes absolutely no difference, and will only be used to legitimize the process of creating a definition to destroy us. They believe in opting out of the process and continuing to seek cancellation of the contract.

That is a huge gamble.

Right now, there are at least eight members of the IOM panel who are trying to create the right case definition. These eight people know the devastation of this disease, and they are working hard to ensure that the case definition serves our interests. They need our help to do it.

HHS blatantly refused to seek our input into the decision to give this contract to IOM. Now IOM is offering us an opportunity to provide input into their decisions. How can we complain about being left out of one decision, and then refuse to provide input into the actual case definition decision? What conclusion will IOM draw from the silence of our community? Will they be impressed with our stance on the moral high ground? Or will they conclude that we must not care that much after all?

Have you seen the agenda for the May 5th meeting? One name stands out: Dr. Megan Arroll, Director of Research for The Optimum Health Clinic in London. The Clinic uses a number of alternative medicine treatments, including techniques derived from the Lightning Process and Mickel Therapy. Their approach is based on the chronic stress model of the disease. So part of the choice we have to make is whether we will cede the floor to this perspective. Should we allow that perspective to go unchallenged and unanswered? Should we leave it to the ME/CFS experts on the panel to make that argument for us?

You have valuable things to say to IOM. I know you do. You have your own experiences with seeking diagnosis and healthcare. I know you have strong opinions about the name. By opting out, you silence yourself. You deny IOM the benefit of your experiences. The IOM panel NEEDS to know what you have been through, and NEEDS to know what you think about the disease name. Chances are, you have something unique to say, something that the rest of us – while we will try to speak for you – might miss. Are you willing to take that risk?

Even if we say everything you would say, there is no substitute for volume. If ten of us say we want the name ME, that’s nice. But if 100 of us, or 1,000 of us say it, it is much harder to ignore. Part of our power comes from numbers. Why should we sacrifice that power? Don’t you think the IOM panel will notice if the meeting room is filled or half empty? Don’t you think someone will count the number of messages they get for this meeting? And if there is anyone on that committee looking for weak spots on our side, don’t you think they will point to lack of participation and use it against us?

If this is war, should we simply abandon one of the battlefields and turn our backs on the fight?

Not me. Time and again, ME/CFS advocates draw parallels to the HIV/AIDS movement. But remember one of the main slogans of that movement: Silence = Death. I will not be silent. I will not be shamed for speaking out to IOM. I say press on all fronts. I say cover all our bases. I say SPEAK NOW! Don’t let this opportunity pass by.

The IOM panel asks “what are the most important issues that healthcare providers should be educated about when it comes to diagnosis of ME/CFS?” So tell them. Tell the panel how long it took you to be diagnosed. Tell them what other diagnoses were considered and why, especially if you were told it was all in your head. Did your doctor tell you to exercise? Did your doctor understand anything about PEM? Has a healthcare provider ever talked to you about cognitive dysfunction? Were you given the information you needed to protect your health and cope with the disease? Do you think your gender, race, or socioeconomic status had any effect on your experience of getting diagnosed? Have you even found a healthcare provider who knows anything about the disease? Have you been harmed by the kind of information put out by organizations like CDC or the American Academy of Family Practitioners?

The IOM panel asks “What are your thoughts on the current terminology used to describe this disease: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome? If you could suggest new terminology, what would you suggest and why?” So tell them. Tell them you hate the name CFS, and why.  Do you like ME/CFS? Prefer ME? Want them to come up with something new? Why? Tell them what you think, or allow them to make these choices in the face of your silence.

If you can, submit your comments before April 23rd to But you can submit input any time to, so don’t give up if you can’t send something in by the 23rd.

You are not limited to these questions, of course. If you want to tell them why you oppose the contract altogether, you are free to do so. If you want to talk about the danger of GET, go ahead. Tell them that you believe there are biomarkers, or that they should adopt the Canadian Consensus Criteria in its entirety, or that this is an autoimmune disorder, or that we need a specialty home. You should tell them whatever you want. I can’t guarantee they will listen. But I CAN guarantee that if you do not speak, they won’t hear you.


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62 Responses to Don’t Silence Yourself

  1. Gabby says:

    Eileen Holderman’s PUBLIC letter to the IOM is not a stance of ‘silence’. It is an act of PROTEST!

    Had Eileen privately refused to accept the invitation, I could have understood your claim of silence=death.

    Eileen has made a very public statement of protest. She clearly outlined all the reasons why she is protesting and what her and many other advocates have chosen to do. Whether one agrees with her stand or not, I don’t think that one can deduce that to be silence.

    As far as sending in comments, one can send in a comment of protest and explain why. That is not silence. One can state why they choose NOT to attend.

    There are ways to be heard from “without”.

    I know that we keep being told that 7 or 8 members of the panel are on “our” side. Don’t you think it is very disturbing that this being the case, the agenda still shows Megan as the speaker when it is clear that she is a proponent of GET and CBT? Even if the members were not the ones setting the agenda, where is the outcry from the?

    This committee has only one chance at working on this and this is probably the last “open” meeting and this is one of the speakers that the chose? This, despite all of our previous comments, presentations at the January meeting? This is how our overwhelming “voice” has been heard?

    I am not saying that those who choose to comment and participate, should not. It’s all a personal choice. Please, don’t put down the ones who choose to protest this whole process fully.

    • Jennie Spotila says:

      We don’t know whether some of the panelists opposed Dr. Arroll’s invitation to speak. Maybe they did object, and were overruled.

      It is not my intention to put anyone down. As I said in the post, everyone has to follow their conscience on this. Eileen has always acted in service to the ME/CFS community. However, even the public act of protest still has the effect of silencing her input and views. Eileen oversaw the CFSAC’s evaluation of the CDC’s website. She has chaired the CFSAC’s Education and Quality of Life Subcommittee. That experience is invaluable to the IOM panel. I think they need to hear Eileen’s perspective on what CDC has put out there for physician education. While I respect the principles that motivated Eileen’s decision, I wish the panel could hear her full views on diagnosis, name and education of healthcare providers.

  2. Sandra says:

    Thanks, Jennie. I agree with you. I have sent my comments in and, frankly, it felt good to say all the things that have built up in me since coming down with ME and living in the quagmire that is CFS for about 30 years, and knowing that this will be in the public record. I will never stop speaking out and fighting for the justice and recognition we have been denied for all these years.

  3. One thing I can’t wrap my mind around is that the panel is required to perform an evidence-based review. We are talking replicated studies. What we have to say is not evidence. We are just anecdotes. Our experiences, opinions, etc. fall OUTSIDE the scope of the study. It makes no sense for the IOM to seek our input because they are not allowed to take it into account. It’s everybody’s guess why they are asking for our opinion anyway.

    • Jennie Spotila says:

      Page 2 of the IOM’s Technical Proposal states: “Specifically the Institute of Medicine (IOM) will: Conduct a study to identify the evidence for various diagnostic clinical criteria of ME/CFS using a process with stakeholder input, including practicing clinicians and patients . . . ” Page 5 states: “In addition, the committee will sponsor open meetings to enlist the comments and concerns of health educators, patients family members and other caretakers, health care professionals, and advocacy groups.”

      Similar language is found in the Statement of Work/Request for Proposal document: the IOM will “Conduct a study to identify the evidence for various diagnostic clinical criteria of ME/CFS using a process with stakeholder input, including practicing clinicians and patients;” and “During one or more public meetings, the Committee shall consider the testimony of ME/CFS patients, caregivers, and advocacy groups in addition to relevant subject-matter experts such as clinicians, researchers, service providers, and public health officials.” (pp. 2,3)

      According to documents in the Public Access File, the IOM is also collecting data from a variety of sources to do its own analysis. Exactly what that will look like isn’t clear from the documents currently in the PAF.

  4. Ess says:

    I sent in written comments to the first IOM meeting, as did others, before the required date. My comments spoke to STOP the IoM contract for ME/CFS and adopt the CCC–and that any committee needs to be comprised of ALL ME/CFS experts.

    I did not adhere to the request for substantive information, and I expected to see my comments as part of the public access file–I complied within the date.

    NO–my comments were not in the public access file. Could that be because my comments did not fall within the ‘parameters’ dictated? As such, I also believe that my comments, along with others, were not given to the IoM committee members to read. I believe that is part of the set up–cull/put aside that which is not in keeping with the political agenda set-up of the IoM Committee.

    This line of ‘operation’ culls out much ‘evidence’ /comments for the public access file–and that is likely many, many, many comments sent in. Therefore, the politics make it look as they would like–for the pre-determined outcome. Their tactics are deceptive.

    As for the parameters ‘set’ for the evidence-based review–the IoM committee can only use what they have been given/supplied with under the work task–same for our comments–if our comments do not fit within their ‘scope of questions’–they are not included–by their rules.

    So, no, we are not limited in our answers to the questions–we can say what we want–however, our comments will just be left out in cyberspace. There is no accountability.

    This whole IOM contract is a RUSE–and this third IoM meeting with space for public comments is a continuation of their game.

    Invited speaker Megan Arroll of the UK–ME/CFS is caused by a maladaptive stress response–psychobabble fixes for a biological disease–they ought to have just invited Sir Wessely himself.

    • Jennie Spotila says:

      Actually, your four page comment from January is in the Public Access File. I just double checked my disc.

  5. I agree with Gaby entirely. But I really do hope that the panel picks the speakers since the chair was so adamant about the committee not being beholden to any outside influences. So, the fact that they picked Megan Arroll either means that our experts are being ignored or, and that is scarier, that they think the Arroll is a suitable speaker for the meeting. If the choice of Arroll doesn’t convince ppl that this “study” is headed for a cliff, then I don’t know what will.

    In terms of challenging her speaking slot, remember when some patients sent in lengthy comments regarding potential conflicts of interest of committee members? Not a single committee member was replaced. How many times do we have to be turned down for a date before we stop asking the IOM out?

  6. Gabby says:

    You state Jennie that we do not know if committee members have objected to the choice of Megan Arroll as a speaker. This is true, since we do not know what happens behind closed doors. But, if that is a fact that there has been a majority who objected to her but, The IOM is still forging ahead with this agenda, we have even more to worry about than I originally thought.

    That would mean to me that this is, has been and will continue to be a process controlled by….(you can fill in the blank) Who is driving this train?

    Like Ess who posted above, I too sent in my personal comments to the IOM within the time frame stated and it does not appear in the public access file either.

    • Jennie Spotila says:

      Ess’s comments are in the Public Access File. Your two page submission with the results of your Phoenix Rising poll is also in the File, Gabby.

  7. Milo Paradiso says:

    All the evidence based that is recorded comes from CBT and GET from the UK. Take a look at the Cochrane database. It’s hair rising. The Cochrane database is the most respected collection of reviews for all diseases, except well ME. We all know why.

    Patients need to state loud and clear that they are indeed very sick and that CBT, GET, Mickel Therapy, Lightning process will cause harm. Hell, there is a clinical trial going on with children on effectiveness of Lightning process.

    That is very scary stuff.

    We need to speak. Because we cannot walk the streets. Most don’t have money to head to Washington or San Francisco to protest, and even if they did, they cannot take their bodies to do that.

    Speaking from our bed is out only opportunity.

  8. Ess says:

    Good to know these comments have been posted. Will check that out further, thank you.

  9. Darlene says:

    “Right now, there are at least eight members of the IOM panel who are trying to create the right case definition. These eight people know the devastation of this disease, and they are working hard to ensure that the case definition serves our interests. They need our help to do it.”

    This is absolutely crucial IMO. Thanks for the inspiring words, I’ll get busy drafting a letter. (It’s comforting to know that they’re showing up in the public record.) The price of silence is indeed too high if it’s in any way construed as apathy.

  10. Jane L. says:

    Thanks for this, Jennie. If I understand correctly, we should submit our comments to the email address if before 4/23.

    You wrote: “The IOM panel asks “what are the most important issues that healthcare providers should be educated about when it comes to diagnosis of ME/CFS?”

    Are there any other questions they have specifically asked for public comment on, and if so, where would one be able to find them? (I understand that we can submit any thoughts related to ME diagnostic criteria, etc. but was curious to find other specific questions they have posed, if any.)

    Thanks so much for these updates.

    • Jennie Spotila says:

      That’s the right info for submission. The other question they’ve asked is your preferences for the disease name. Thanks for speaking out!

  11. Mary Dimmock says:

    I’ve objected to the IOM and even more so, the P2P, from the beginning. And I have the same concerns voiced here.

    But as long as these processes continue, I agree with Jennie that it is essential that we use all means possible to voice out concerns on the process being followed, on the failure to clarify the scope of disease and on especially on how these non-specific fatigue-focused CFS definitions and medical education have destroyed the lives of patients.

    Otherwise, the only thing in the IOM public record will be a push to continue on with overly broad CFS definitions and the use of CBT and GET as treatment.

  12. Ren says:

    “Dr Megan Arroll… has a PhD in ME/CFS…” * // “Megan completed her PhD at the University of Surrey under the supervision of Dr Victoria Senior and Professor Jane Ogden within the area of health psychology.” ** // From Arroll (07-2013), “ME/CFS can be conceptualised as a maladaptive stress disorder…” ***

    * (The Optimum Health Clinic website Disclaimer page)



  13. I strongly agree with everything you say here, Jennie. After 30 years we finally have someone yearning to hear our experiences. Those stories are valuable and paint a true picture of the struggles we endure.

    During the severely ill session at the IACFS/ME conference, Elin Strand, a clinical psychologist from Oslo Norway, spoke about sickness behavior and how patients are not as sick as they believe. She spoke highly of CBT and GET. It was challenged by several people in the room including Dr. Raymond Perrin. If this methodology is going to be presented to the IOM committee by Dr Megan Arroll, it must be countered!

    The IOM needs to know about harmful therapies and how it leads to morbidity and mortality. I was bedridden for 4 years because of physical therapy. I will not remain silent and will tell my story with passion. Silence=Death!

  14. Billie Moore says:


    I, too, agree that to be silent is to be invisible and of no use in the fight to get the IOM to come to the right conclusions with this study. I wish Eileen had agreed to go. She is one of the best advocates we could have had there. Let’s face it. This study exists; it’s in motion; we aren’t likely to stop it. But we must keep at them with our comments whenever possible!!

    Like others, I am not encouraged by the choice of Arroll to be a speaker. Love to know how that happened and by what criteria she was chosen.

    I do not read the second question as you do, Jennie. I find the wording of the question ambiguous. You are reading it as – what name do you prefer to describe the disease? I think that the question could also be – how should ME/CFS be described in literature, papers, etc. I much prefer the question of what name and will answer it that way. Just not sure that’s what the question is actually asking.

    Do you know who the patient advocate(s) are for this meeting?

    And could you let us know the link to the IOM public comments from the January meeting, please?



    • Jennie Spotila says:

      I do not know who is speaking on the patient panel. And the Public Access File is not online. You need to request a copy from the Public Records Office at IOM.

  15. Ess says:

    More of ‘the set-up plan’ with the HHS, CDC, NIH–IoM contract and P2P–entrapment and destruction for ME/CFS people/patients–despite the explosion of reams and reams of biological evidence for ME/CFS.

    Also, remember that—Dr. Peter White, Psychiatrist in the UK—was chosen in the US as Chair of the Committee (2009) to evaluate the CDC’s 5-year plan for CFS–and this is now the year 2014. WHY would a psychiatrist be tasked with this job? To fulfill a predetermined scripted set-up psychiatric outcome.

    We also remember that UK Psychiatrist White did not disclose his executive position with two insurance companies when he chaired this US CDC committee. On the CDC website ‘still’ highly recommending CBT and GET for ME/CFS–White’s psychiatry practice links there.

    Why did the HHS, CDC, NIH refuse to listen to and follow the recommendations of the ME/CFS Experts and Researchers in stating the need to adopt the CCC and stop the IoM contract?

    There seems to be a highly vested interest by ‘the powers that be’ to bury ME/CFS and p/w ME/CFS. AND, the IoM committee–stacked as it is–and restricted as it is in being provided with ‘biased’ information to review–along with the P2P, are the rammed in set-up vehicles to do just that.

    These ‘tactical behaviours’ = dangerous abuse, deceit, neglect and misuse of power — ‘the powers that be’ in their actions and inactions are directly responsible for causing an epidemic/pandemic of ME/CFS.

    These ‘powers that be’ are outright destroying human life by the millions–while science is trying to correct this gross misdeed and injustice perpetrated on and against the ME/CFS patient population.

    Yes–I think all this and more has been already communicated to the IoM committee–the HHS, CDC, NIH, et al!

    Sooo–now–what happens next at the upcoming third IoM committee meeting?? An invite to Dr. Megan Arroll who has a PhD in ME/CFS–(in citing Ren’s info above)–and as recently as 07-2013 “ME/CFS can be conceptualised as a maladaptive stress disorder …”

    Realllly–Dr. Megan knows ‘that’ and she has a PhD in ME/CFS. It’s time to become a ‘life-long learner’ and ‘open up’ to what science is revealing about the physical biomarkers of ME/CFS.

    Hmmm–I wonder if that bubble bath, brainwashing mantras that I am not really sick–this sick–it’s all in my mind–ohh, and that Lightning huba-hooba, etc., etc. will fix ME/CFS. NO–it is NO fix!! This is a real physical illness, it IS debilitating and it is NOT psychological. Sooo, let’s stop mucking about with that which has no significance and is if NO help–hellloooo–the disease is epidemic–while all the psychobabble goes on.

    Time to give some REAL research money to the physical science of ME/CFS.

  16. julia cosgrove says:

    Ive had ME for many yrs and am appalled at drs reaction ive been sent to psychiatrists and psychologists and told its just stress the neuro dr I saw was a waste of time as she doesn’t believe in ME. My gps face an upward battle to get me treatment when they refer me as the information out there is so misleading and as a patient im disgusted at the way im treat and disbelieved. Im a 42 yr old woman treat like a 5 yr old child x I need people to understand that any form of exersize results in SEVERE lactic acid. Incredibly painful and my brain fog is more like dementia and the liver tests always come back as normal till last minute whaich is dangerous I just need people to understand that over the yrs readin the research I probably know more about this illness than the drs.

  17. Pamela Edelson says:

    I’m the parent of a ME/CFS child who has been sick for 11 years; my daughter first got sick at age 13 and is still sick at age 24, but is functioning because she is under the care of a true CFS doctor. Before she began with this doctor, she was cared for by some well meaning chiropractors, nutritionists, etc. However, due to a severe flare at age 17 which left her unable to attend school, she became very depressed. Subsequently, she began treatment with members of the psychiatric community. I can only say that this time period was a nightmare for her and the whole family. Even when these people professed to believe in the physical part of the illness, they totally pushed the belief that depression was a primary cause.. and of course, could be remedied by medication and CBT. The high doses of medication left my daughter with a permanent tremor and my daughter actually resented the CBT; in fact, in a therapy program that she attended, she told me that she simply gave them the answers that they wanted so they would leave her alone. The IOM panel needs to continue to hear from the patient population so that this kind of situation does not continue to repeat itself indefinitely, as I know it still is….I agree that the ME community cannot remain silent, even if we feel that our voices are still not being heard. I agree that Silence= Death.

    • Jennie Spotila says:

      Pamela, I hope you and/or your daughter will be able to submit comments to IOM. You can speak to their first questions (what do healthcare providers need to know) and to the invitation to Dr. Arroll to speak at this meeting. I’ve heard from several sources now that comments submitted by the deadline are given to the panelists in a book of meeting materials. It is part of their responsibility to read those materials before the meeting. I can’t guarantee that every single panelist reads every single comment, but I believe it is so important for us to at least make the information available to them.

      Remember that comments from the public go into the Public Access File. We will have a record of everything submitted to the panel. If they make bad decisions, at least we can counter that and say that the right information was available to them. But if the information isn’t there, we will have a hard time justifying complaints about a bad decision. We have to try.

  18. Jan van Roijen says:


    ME -We don’t Need a Workshop…! Help ME Circle, 4 April 2014 Co-Cure: Quote:

    Jennie Spotila:

    *I am very happy to report that an effort is underway to secure Congressional support for a $7-10 million RFA for ME/CFS funding at NIH.

    And there is something YOU can do to help!*

    (See Co-Cure above)




    Don’t Silence Yourself

    April 8th, 2014

    Jennie Spotila


    “On May 5th, the IOM panel creating new diagnostic criteria for ME/CFS will hold its second public meeting.

    The only way you can provide input is by submitting written comments, unless you are an invited speaker.

    I’m here to plead with you to send your comments to the panel.”



    This is an interesting blogpost.

    Jennifer Spotila says:

    “Right now, there are at least eight members of the IOM panel who are trying to create the right case definition.

    These eight people know the devastation of this disease, and they are working hard to ensure that the case definition serves our interests.

    They need our help to do it.”

    How does Ms. Spotila know this?

    Does she have some secret information that the rest of us do not know (shades of Cort and CAA!)?

    Who are these eight people?

    How does Ms. Spotila know what is going on behind the closed doors of the IOM?

    And why should we believe Ms. Spotila’s bald assertion that eight members of the IOM panel are trying to create “the right” case definition?

    And – what is “the right case definition”?

    Is this “right case definition” the one Ms. Spotila’s buddies at the CAA choose – including Suzanne Vernon who was a member of the IOM committee that renamed Gulf War Illness “Chronic Multisymptom Illness.”

    Ms. Spotila further says:

    “Some advocates are in favor of boycotting the IOM meeting and refusing to answer the questions they have posed to the patient community.

    Their argument is that patient input makes absolutely no difference, and will only be used to legitimize the process of creating a definition to destroy us.

    They believe in opting out of the process and continuing to seek cancellation of the contract.

    That is a huge gamble.”

    Why is this a gamble?

    We all know what the IOM is really doing is devising a psychological definition – on orders from the HHS, who are paying them to do so – in order to recommend that ME/CFS patients get antidepressants, CBT and GET – just like Ms. Spotila’s BFF Suzanne Vernon’s IOM committee did to Gulf War Illness (“Chronic Multisymptom Illness”).

    The IOM committee is required to do an “evidence-based” review, as pointed out by Jeannette Burmeister in the comments to Ms. Spotila’s blogpost.

    And, as Ms. Burmeister also stated, what patients say and write is not evidence.

    So patient statements cannot be considered by the committee anyway since they are not evidence.

    The fact that the IOM has been instructed to hold at least one public meeting and to seek patient input does not change their charge to make an “evidence-based” review.

    Hearing or reading patient statements does not mean that the IOM is to consider them in making their review; that review is required to be “evidence-based,” not anecdote-based using patient statements.

    The IOM would not even give Eileen Holderman the opportunity to speak at the May meeting if she wanted to speak in dissent.

    They invited her to speak, but apparently chose not to hear from her if she did not agree with them.

    So why should ME/CFS patients believe that the IOM wants to hear from any of us?

    If they wanted to hear why we are opposed to what IOM is doing, they would have scheduled Ms. Holderman time to speak in dissent.

    Ms. Spotila’s contention that boycotting the IOM completely is a gamble is ridiculous!

    The real gamble is ME/CFS patients taking their own precious energy to compose written statements to the IOM (which they can count as patients participating without indicating that they were speaking against what the IOM is doing) and use patients’ own efforts to falsely say that patients agree with what IOM is doing as evidenced by their participation.

    Lucy (by the name of Jennifer Spotila) is holding the football – again.

    And she (and the IOM) are asking us to try to kick it one more time.

    Will ME/CFS patients fall for it again?


    • Jennie Spotila says:

      Jan, I’ve allowed your comment through although it consists of two quotes from my blog and the full text of a comment Wildaisy posted on her forum. I hope you have Wildaisy’s permission to post that comment in its entirety, since she herself chose not to post it here.

      As I said in response to her original comment, I do not have inside knowledge about the IOM panel’s deliberations. Neither does anyone else. The panelists are abiding by their mutual agreement to hold all their deliberations in strict confidentiality. I have tried to get comments from some panelists, and all have refused because of their confidentiality agreement. So while I can’t prove that I am right, no one else can prove that I am wrong – unless they have evidence obtained in violation of the confidentiality agreement.

      Anyone who reads my posts on the Gulf War case definition report would see that I was not happy with the report, despite Wildaisy’s accusation to the contrary. I also must point out that this IOM panel is not charged with recommending treatments for ME/CFS. I will be commenting on the implications of this to the IOM in my next submission.

      Wildaisy (and others) can make assumptions about who my BFFs are (or draw analogies between me and cartoon characters) all they like. I don’t see how that gets us anywhere. I made my case for why I believe we should provide input to IOM. Obviously, some people may disagree. As I said in the original post, everyone must follow their conscience on this. It’s unfortunate that anyone feels the need to refute my position with insults and accusations.

  19. Ess says:

    Basically, the IoM contract and the P2P are tantamount to a life and death situation for us.

    Cancelling of the IoM contract and adopting the CCC–both as recommended by the ME/CFS Experts and Researchers to Sebelius, Department of Health and Human Services–would give us, and next generations, a chance at life with biological answers and research–in the hands of the ME/CFS Experts and Researchers. It is they who hold the keys and the promise to cracking the biological code of ME/CFS and they are ‘hot on the trail.’

    Conversely, ME/CFS definition/redefinition using ‘evidence-based’ medicine as set up by the HHS for the IoM contract/committee and Pathways to Prevention in a restrictive and ‘biased’ backdrop using NON-ME/CFS experts–is a furthering of our demise / death sentence for us.

    The ‘situation’ with the IoM contract and P2P is NOT science; this is utter lunacy, bias, politics, egos, abuse of power, arrogance, stubbornness, more nonsense, involves insurance/disability rulings and payouts, and egos not wanting to admit to past and ongoing mistakes causing serious harm to ME/CFS patients, etc.

    We in the ME/CFS community do not need this continued harm thrust and forced upon us!

    Take a bow on this before you leave the stage, Ms. Sebelius, as you have enabled this ongoing destructive horror show. Your department of HHS could have changed the world for the better from the pandemic of ME/CFS had you taken the advice of the ME/CFS Experts and Researchers in the action of their unprecedented letters sent to you–ME/CFS EXPERTS advising you to STOP the IoM contract and adopt the CCC for ME/CFS.

    Rather, you join the ranks of those who have damned us to a non-existent life and a death sentence of ME/CFS. The ME/CFS epidemic/pandemic is coming everyone’s way . . . We have been warning you to fix this!!

    We must continue to fight this IoM contract all the way!! Our lives and others depend upon this!!!

  20. kathy d. says:

    Everyone’s argument is so compelling. There are reasons to give explanations to the IOM about what living with ME/CFS is really like, the disability, the isolation, the total change in one’s life in every respect. And there are many reasons to refute a new case definition that the IOM comes up with, and to refute GET and CBT, and what other absurd “treatments” are being bandied about.

    I can’t decide what anyone can do, and I’m in the kind of ME/CFS shape where I can’t really write up a summary about my life and an appeal to reason, an appeal for scientific research and real treatments. I’m just not at that point right now. If I wrote something, it would be jabberwocky, in my opinion. If I can get it together to write something by the deadline, I will.

    I think a multi-pronged approach is needed. Expose the reality of this disease to the IOM, its physical causes, and call for scientific research and real treatment. Explain why CGT and GET are not helpful at all. In fact, exercise often exacerbates the disease’s symptoms — especially, muscle pain and exhaustion, in my experience.

    At the same time, continue to be independent of the IOM, denounce what is said by their panel if needed, issue statements, a press release — if we can circulate it. Or see if we can get a journalist to publish a response.

    Keep on plugging away.

    And, what, by the way is a PHD in ME/CFS? Never heard of this before. Are they universities actually dispensing PHD’s in our disease? What do these distinguished students take courses in?
    How to hoodwink people who can’t move, are in awful pain, have bad headaches, muscle pain and joint aches, are up all night — into thinking it’s all in their heads? Impossible to even imagine.

    • Jennie Spotila says:

      As far as I know, there is no such thing as a Ph.D. in ME/CFS. It’s my understanding that Dr. Arroll’s degree is in psychology.

  21. Ess says:

    Questionably interesting that the IoM committee would invite a speaker with a PHD in psychology–vs. any one or more of the knowledgeable biological ME/CFS experts or scientists/researchers–e.g. Endlander, Peterson, Chia, Cheney, et al. Ohhh–right–the HHS/IoM want to avoid bias . . . when their bias is psychobabble that has no basis in ME/CFS as the disease.

    Scientific biological information leading to biomarkers in ME/CFS is NOT bias–it is the truth in science.

  22. kathy d. says:

    Science is definitely not bias. It’s the truth. Tests showing biomarkers in gene expression or changes in the brain or any number of objective findings show truth, not a feeling or bias. Science isn’t a belief system. It’s the real world.
    It seems that the reality of scientific findings is being ignored by the government. Both science and non-science are being pitted against each other like two sets of ideas, when one is based in fact; one isn’t.

    It’s like arguing over the age of the planet, when there is scientific evidence showing this fact, but some deny it.

    It’s kind of astounding in this day and age that science is refuted or ignored here and in Europe.

    All so the government and insurance companies don’t have to provide medical care, disability insurance and other services for people with disabilities.

    It may be even tougher now that Sec. Sebelius has retired. Her replacement’s job is to keep costs down of medical care. So, we’ll see how this plays out for us.

  23. Billie Moore says:

    I just saw “Dallas Buyers’ Club.” If you haven’t seen it, DO. It is now available via Netflix. It makes painfully clear that the FDA, CDC, NIH, HHS have not changed in 30 years. Different bureaucrats, same attitudes. If we, for a second, think the FDA or any of the other agencies are helping us or hearing us, think again. The FDA is just as recalcitrant about actually aiding us as it was initially of aiding the AIDS patients. And the only reason the FDA changed course in the 1980’s was from political pressure. The FDA is the key – they could do much more to get a treatment going. We don’t need definitions – we have a perfectly good one. We need TREATMENTS! The new FDA guidance document gives little guidance or incentive to pharma to develop ME drugs. And they should have approved Ampligen at least in 2009.

    Those who are thanking the IOM or the CDC or CFSAC or the NIH or the FDA for anything are deluding themselves. The entire FDA stakeholder meeting in April 2013 was driven by a community-wide full-court press on them to, it was expected, have a meeting with the major pharmaceutical companies, experts, patients, and FDA reps to pursue ways treatments could be encouraged and fast tracked in some way. That did not happen, and it still is totally off the FDA planning schedule. What we got instead was a day where the FDA could finally get a sense of the pain and suffering the patients endure for years on end and a few blathery talks the next day. (Lily and Jennie – this does not refer to your talks!)


  24. Ess says:

    I saw ‘Dallas Buyers’ Club’ too–I thought the same thing–there we are–ME/CFS all over again–as with HIV/AIDS patients. AIDS patients HAD to fight for their rights to LIFE; fortunately they could physically ‘get out there.’ AIDS patients DID eventually get their MEDICAL needs met–having had to fight for their rights–research money poured/pours into HIV/AIDS because people were dying and the disease was spreading.

    To our detriment, we are caught up in a MUCH longer life-time time-span in our fight for JUSTICE than the HIV/AIDS patients were. We, p/w ME/CFS are barely existing in our lives–stuck in our houses–every aspect of life stolen from us in this biological disease of ME/CFS. We are locked away with ME/CFS. ME/CFS IS spreading to human life all the while!! HHS–guilty of this atrocity!!

    DECADES later, in advocating and speaking up, the HHS, FDA, CDC, NIH, in their ongoing pattern, still have NOT listened to ME/CFS patients, EXPERTS and RESEARCHERS. We aren’t seen to the public in our ‘invisibility’ to be in an ‘immediate death’ time-frame–so HHS sees fit, and has GOTTEN AWAY with continuing to sweep ‘us’ under the rug–intent on perpetrating the WRONGful MISleading DEceitful information–the constructed LIE–that ME/CFS is a psychological illness.

    HHS through its agencies KNOWS the truth that ME/CFS is a debilitating biological disease–yet their political agenda/game is to DENY the TRUTH–DENY us the right to LIVE our lives–STEALING our lives away and KILLING us; all the while the disease SPREADS! HHS–GUILTY of this atrocity!!

    The ‘actions and inactions’ of the HHS and affiliates cause nothing but HARM to us–and the disease spreads day by day, year by year, decade by decade, country by country, continent by continent–to our loved ones–destroying lives–individual lives and life as a **family unit for those involved!! HHS–GUILTY of this atrocity!! **(The newly appointed Secretary of HHS speaks in regard to health of the importance of family . . .)

    Any doctor that knows well about ME/CFS IS extremely concerned about this EPIDEMIC/PANDEMIC as they know ME/CFS to be–they see it SPREADING–to more and more people here at home and globally!!! The ‘powers that be’ continually puts its efforts into DENYING the TRUTH about ME/CFS–and, instead, puts all effort into what amounts to HARM to ME/CFS patients.

    From time to time, the HHS and its arms/agencies attempts to placate ‘us’ with ‘seemingly’ little ‘dribbles of nuggets’ and ‘busy work’ thrown out at us in an aim to appease and ‘make it appear ‘as if’ they are doing something ‘productive’ in ‘partnering’ with us. BOGUS!!!

    That is very right what you say, Billie. “We don’t need definitions — we have a perfectly good one. We need TREATMENTS!”

    The HHS IoM contract is a constructed political farce in full swing! Don’t be fooled!!

  25. kathy d. says:

    I agree without seeing Dallas Buyers’ Club (although I will see it) that HIV and AIDS were ignored until a strong movement of gay activists and their supporters insisted, demanded, pushed to demand research, care and treatments. Absolutely. Nothing was done until they did this.

    And people were dying at an alarming rate. This became an emergency, and the movement put it in the faces of the medical profession, government, pharmaceutical companies, etc., and they were successful.

    We’re limited in what we can physically do, so we have to strategize to figure out what we can do. It’s got to be strong and seen by the media.

    • Jennie Spotila says:

      This is not directed at you, Kathy, or any one specific person.

      It amazes me that so many ME/CFS advocates talk about the HIV/AIDS movement and its success, but cherry pick what they think needs to be replicated. Yes, we need demonstrations and urgency and so on. But does anyone actually believe that the HIV/AIDS activists would not have shown up for an Institute of Medicine meeting?

      Furthermore, some (but not all) of the people who are advocating that we boycott the IOM meeting also despise the CFIDS Association, and maybe even some of the other organizations. I don’t know what the CAA plans to do in reference to this second IOM meeting, but it seems likely that they are going to participate in some way – either by being there or submitting information. I find it very puzzling that the anti-CAA advocates would just hand them the IOM microphone and let them do their thing.

      If people want to write to Congress and/or the media about IOM, I think that’s fantastic. In my opinion, we need to be in everybody’s faces – not just IOM. But while some advocates will focus on Congress and the media, some of us think we also need to be speaking/writing to IOM. I will not be shamed for believing that it’s important. And the advocates who choose to boycott IOM will have to accept what follows – whether it’s that organizations they don’t like will fill the void, or that IOM will conclude we don’t care enough (or that we think they’re doing fine).

      The more I learn about Dr. Arroll, the more appalling it is that she has been invited to speak. I intend to tell IOM that. I hope other advocates would join me in doing so.

  26. kathy d. says:

    I didn’t advocate boycotting the IOM. In my post of April 12, I suggested a two-pronged approach. Telling the IOM what the real nature and symptoms of this horrid disease are, how debilitating the disease is, the scientific findings on biomarkers et al., and to insist on research funding and treatments THAT WORK, not bogus ones.

    Then I said if the IOM does things that are disastrous to us, even having spokespeople who insist on GET and CBT, ignoring the science that says our disease is caused by a physical illness, putting up an absurd definition and symptoms’ list, etc., then we denounce it, publicize our point of view and the science behind it. We call for funding for research and treatments, based on the science thus far.

    I never said boycott the IOM. I specifically suggested two scenarios, both strong and neither one contradicting the other.

    • Jennie Spotila says:

      Kathy, I tried but perhaps failed to make clear that my comment was not directed at you. Your two prong approach makes sense to me!

  27. kathy d. says:


    It is astounding to me that we have to fight for science to be heard! I feel like it’s back to the leeches and bloodletting for us because the powers that be don’t want to look at the findings of biomarkers and the other real evidence of our disease. And equally absurd is that Dr. Ian Lipkin, virologist extraordinaire, has to do his own fundraising — and among people with this disease, rather than get government grants. It’s the Twilight Zone here.

  28. Chris Heppner says:

    Hi, Jennie–very glad you are back at work–and I hope feeling better too. I am working on an email to the IOM, but just wanted to say a couple of things here about Megan Arroll, after reading two papers with her name on them and taking a look at the website.

    I don’t feel quite as alarmed as some here–the notion that ME is a form of self-propagating and destructively self-continuing stress response is in no way specific to Arroll–Gordon Broderick, whom I think most would count as one of the “good guys,” has played with versions of it, and it would help to explain the occasional sudden recoveries–I have met (and written about on PR) one young man who did just that. Broderick wrote an elegant short paper some years ago suggesting, first as a thought experiment, but also as a possible real life trial, the notion that any complex system has several “stable” states, and that a big and sustained enough stress can push it from a benevolent state to a malevolent one. So maybe a big enough push in either the same direction can force the whole system to return to its original state, or….

    Anyway, I don’t think it is a crazy or necessarily irrelevant line of thought. I have very grave doubts about some of the things tried in her clinic–don’t know much about NLP, and find EF comic rather than credible (though have never tried it) but am myself interested in trying hypnosis–was once hypnotized by a good clinical hypnotist while taking a course given by him on the history and theory of hypnosis–still remember the feeling of instant deep relaxation–worth trying to recover, I think!

    Arroll does take nutrition seriously, and the paper on “nutritional therapy” repeats many good things, some taken from Myhill, in the context of what sounds like pretty good testing protocols. The other paper is very modest about its power, and records honestly the very large % who dropped out of the psych arm–probably fed up with the EF stuff? I recall the word “pacing,” but no references to GE–maybe I have forgotten something.

    In any case, I don’t regard her as the enemy in any serious way, though I do have very grave puzzlement over why she was invited to talk to a group focused on definition–I simply cannot imagine what she might have to offer as a psychologist practising over a variety of modest therapies, all of them aimed at improving a patient’s managing of their disease, but avoiding all reference to the word “cure.” She would not seem to be the ideal kind of person to illuminate the area of “neurocognitive impairments” -all of us could suggest names that we think would be much more relevant and helpful.

    So I am like you left wondering why she was approached, and by whom. On the other hand, there are enough really informed and smart members of the committee to deal with any seriously erroneous or misleading statements she may make about such impairments.
    Best, Chris

    • Jennie Spotila says:

      IOM released a new agenda yesterday and Dr. Arroll has been replaced with Dr. Gudrun Lange. Dr. Lange is much more qualified to speak on neurocognitive impairments.

      I have deep concerns about Dr. Arroll, and I will be submitting some comments to IOM about that. I think it’s very important to ensure the record reflects what we’ve learned about her, and what we can learn from this going forward.

  29. Tina says:

    I don’t see where researchers or scientists depend on patients for legitimacy. Do medical journals make sure a patient is one of the reviewers of submitted papers? They gain legitimacy through academic degrees or certifications, peer-review research of new discoveries and honors or awards, again, from their peers. Oh sure, it’s nice to be liked, to be popular among patients or to have patients express appreciation for your work. But it adds no legitimacy. The IoM committee is coming up with a definition or giving approval to am existing one. They must consider many factors, particularly specificity and sensitivity. These are scientific questions and so the answer is a scientific answer. Even the name question must have its basis in truth.

    We can point out scientific evidence that leads to the best conclusion. The IoM report will not be less credible if patients abstain from giving comments. However, if we don’t give them the evidence, then the thing we fear, a bad definition, is a more likely outcome. The lack of action because of fear can create the very thing that is feared.

    Our experts on this panel certainly do not think it is a foregone conclusion because they are not being paid for their work on this committee. They believe this IoM process has the potential to have a positive impact on patient care. Let’s help them succeed.

    At what point do we main stream this illness? When do we start talking and educating the medical professionals in positions of influence or power? What do we need to do to get our experts and the disease respected and no longer only for what most consider the unscientific fringe of medicine? Will isolation from or opposing the processes applied to other conditions increase the credibility of this disease or our experts?

  30. kathy d. says:

    One of my pet peeves with so-called “experts” is that some claim telling people with ME/CFS how to “pace” themselves, as if we don’t all already do that.

    We could not survive if we did not pace ourselves. We know to do this. We know if we have to attend some event or go to an appointment or do errands, we have to plan ahead, rest and not be overly ambitious on what we’re doing, and then rest afterwards. If we don’t do this, we have horrendous relapses.

    I keep overestimating what I can do. A few weeks ago, I planned several errands in my neighborhood. i got half of them done and had to sit in three places on the way. So I learned something again. Today I did a few errands and got wiped out, so I’m resting.

    I had to deal with an apartment problem this week. I keep saying I can fix one problem a day. This took me four days to deal with, wore me out, exacerbated the muscle pain, etc., and now I realize I can fix one problem a week. That’s it. I am still learning after all these years.

    But any expert who tells us to “pace” ourselves has no idea what we all go through daily, weekly, sometimes hourly.

    I’m glad Dr. Arroll has been replaced with Dr. Lange. Sounds like a good move. I look forward to reading more about this here. The updates are appreciated, as is the analysis.

  31. Ess says:

    That’s exactly right, Kathy. ‘So-called’ pacing is NOT a ‘magical’ treatment and not a treatment to recovery. It is what we do to exist within the confines of the ME/CFS world, as you say–hourly, daily and weekly.

    It was not necessary for a ‘fancy study’ to define ‘PACING’ for us as if it is some new great revelation and concept–and, indeed, with seeming claims that ‘pacing’ will give us our lives back. We need biological medical science for that!!

    Everything we do is a push–every little thing in a day–we are extremely confined and limited in what we can do. The body is in an ongoing debilitating energy crisis as part of ME/CFS. Once a week for an outing into the world (appointment, errand, etc.) is my limit–and even at that–it is too much–and sometimes doesn’t happen–especially in the month of January after Christmas activity.

    Ohhh, yesss, we ‘come to understand’ this horrid disease that has taken over our bodies, and do our best ‘in hidden existence’ around it–with NO MEDICAL HELP available to us.

    ‘Understanding our situation’ does not change the fact that it is a pathetic way to ‘live’ a non-existent life–very ill–and for the most part ‘in social isolation’ locked away in our houses while the world carries on all around us.

    This decades-long abuse and disregard of the disease of and persons with ME/CFS is nothing short of absolute criminality.

  32. kathy d. says:

    Amen, Ess. Agree on your points. Understanding our situation, as you say, helps us to plan our tasks and know we have to rest, in “social isolation,” while the world carries on around us. I often feel like an observer of my life.

    I do, however, count as positives these blogs with like-minded individuals who articulate who we live with, as well as ideas and analysis of what’s going on in the ME/CFS world. And luckily, I read mysteries, about which there are wonderful blogs, and newspapers. Lately, I’ve watched more TV as my reading skills seem to have ebbed or my ability to read more than a few pages at a time. This is new; I hope it doesn’t last.

    And allergies, terrible. I hate to take too much medication, as everything keeps me up all night and hyper. Nothing like being hyper at the same time as being exhausted. No medical practitioner understands that phenomenon.

  33. kathy d. says:

    Sorry, meant to say “who articulate what we live with (our illness symptoms), not “who we live with.” Yikes.

  34. Tina says:

    I forgot to mention that there is such a thing as PhD in ME. I learned about it from Dr. Ray Perrin, who is a osteopath. He was surprised we didn’t know about it. We said in U.S. universities, there isn’t such a thing. He explained that there is like a major specialty for PhD and minor one. The major one is the broad topic you got a doctorate in. The minor one is the one you wrote your final doctorate thesis on. Must be something only in UK, maybe.

  35. Justin Reilly says:

    @Chris Heppner
    From what little I have read from Dr. Arroll, she doesn’t seem as bad as a Wessely or White, but she’s no good. It’s the same old stuff about that we feel stigma because there is no single biomarker for our illness, CBT and graded activity are the only ‘therapies’ proven to work. Dangerous stuff as usual.

    • Jennie Spotila says:

      Actually, her background and beliefs about ME/CFS are quite dangerous in my opinion. This is why I invested the energy of documenting it and sending it to the IOM committee.

  36. Justin Reilly says:

    @kathy d.
    While Arroll has been ‘replaced’ in that speaking slot by Dr. Lange, it does not mean they haven’t moved Dr. Arroll into one of the secret sessions so that we won’t know she is testifying and won’t protest.

    • Jennie Spotila says:

      My understanding is that all comments from the public – including invited speakers – must be given in public session. The closed sessions are for committee deliberations only.

  37. Justin Reilly says:

    I can see both sides of this issue.

    Personally, I didn’t submit substantive comments to the panel. For me, by now, I feel it is a distraction of my energy from our battle against the IoM contract. I don’t have the energy to waste on really speaking to this panel other than literally saying: “you’re illegitimate, disband and HHS must adopt CCC and “ME.”

    If you have the energy to both fight the contract and comment, I think that’s good.

    For people who are protesting and not submitting substantive comments, I feel it is very important to directly tell IOM and the committee this, rather than remaining completely silent. If you are not going to comment substantively, PLEASE join me in doing this in one quick, easy, quick way:

    Email your support of Eileen Holderman’s and Jerry Spinhirne’s letters to the IoM Committee and various other parties. I urge you to mention that HHS must adopt the CCC and go back to the “ME” terminology. Info below.

    Eileen’s letter:

    Jerry’s letter:

    email to: (; Kathleen Sebelius (; Howard Koh (; (; (; Marilyn Tavenner (; (; (; (

  38. Justin Reilly says:

    After you’ve done the above : )

    PLEASE Sign this email from to protest the IoM contract. VERY EASY- the form automatically emails many crucial Members of Congress and HHS employees!

  39. Ren says:

    This is a late fyi, but someone elsewhere recently wrote that beyond Dr. Arroll’s controversial psychology work, she’s also understood to be involved in acting/modeling, under the pseudonym Meg Oxley.

    In 2008, Arroll co-starred in “Alone with the Dead” – a short, zombie-horror film produced by Mad Science Films (of which she is in 2014, according to FB, still a fan). The film can be viewed freely on the Mad Science Films site (see below). The previous info (which to my knowledge has been neither confirmed/denied by Dr. Arroll) is linked to the following sites (including FB):

    Violence warning:

    “Alone with The Dead”‘s opening narration states that there’s a pandemic, which was first ignored by government and media.

    Soon, we see a man running up stairs with a large knife. He enters a bedroom where a person is lying in bed, fully covered with a blanket. The man rips the blanket off the person, a woman, whom he begins repeatedly stabbing. (The infected, we begin to learn, are sensitive to light.)

    Dr. Arroll’s character, Helen, soon enters the storyline… In the film’s “alternate ending” (spoiler alert), she’s seen covered in blood, dragging an ax behind her, and we are to infer that she has killed her co-star. The End.

    Where does the line for professional ethics end though?

    Can a psychologist/researcher who promotes controversial theories (and potentially harmful “treatments”) for a seriously-misunderstood disease with an abused patient population also ethically promote the fake-science horror genre, as an ax-wielding slayer of humans?

    • Jennie Spotila says:

      I have a very poor opinion of Dr. Arroll’s science. But I don’t see why her acting career would have any bearing on her scientific ethics. Are we going to investigate every single scientist, clinician or policymaker for their creative pursuits, and draw negative conclusions about their science if those creative pursuits are strange? What about other hobbies? Or other personal habits? What line should WE draw in how far we investigate someone? And if we investigate one person, shouldn’t we investigate everyone? Shouldn’t we investigate the people we agree with AND the people we disagree with, just to be fair?

      I haven’t seen “Alone with the Dead” and I don’t plan to. But so what? Arroll’s science fails on its own merits. My opinion isn’t changed because she was in a (presumably) bad zombie movie. My opinion wouldn’t be changed if she was in a good one, either. She could win an Oscar for her acting, and it would have no effect on my opinion of her science.

      I don’t think appearing in a bad zombie movie makes her professionally or scientifically unethical. A good way to test this is to take out her name and insert the name of a researcher whose science I admire. Would I care if Dr. Lenny Jason was in a bad (or good) zombie movie? No. So why should I care if Dr. Arroll does it?

  40. Ren says:

    And of course each is welcome to his/her own opinion. As someone who has been traumatized and abused by medical professionals, as many ME/CFS patients have been, I would not feel comfortable knowing that my doctor had starred in a slasher film, etc. as noted above. (I wouldn’t feel comfortable if my dog’s vet had starred in an animal-slasher film either.) I understand that others might not care. I understad that others may care though, and I don’t feel that it’s inappropriate to pose these questions and share this info, as especially related to violent imagery, and especially related to a “diseased” population.

    “Do Physician ‘Rules of Conduct’ Extend to Physicians Working Outside of Medicine?” is a recent opinion article on medscape that also explores this topic.

    • Jennie Spotila says:

      Ren, do you have a link to that Medscape article?

      You raise an excellent point about the doctor-patient relationship. I agree that many ME/CFS patients have been traumatized by healthcare providers. In that context, I agree that a provider’s extracurricular activities become more relevant.

      In my response to your earlier comment, I was only thinking about Arroll as a researcher, partly because I would never consider seeing her as a patient. Her science stops me waaaaay before I get to her hobby. I apologize if you found my remarks dismissive. I was approaching the question from a different vantage point.

      Of course this raises a different ethics question. Over the years, I’ve heard rumors about the drinking habits of a few clinicians/researchers. I wouldn’t repeat them because it’s not first hand knowledge. But given your point about many patients being traumatized by healthcare providers, what is our obligation to disclose this kind of info to our fellow patients?

  41. Ess says:

    Logic and common sense or lack of it speak loudly to a viewing audience.

    Dr. Arroll’s psychobabble opinions and questionable treatment program regarding ME/CFS are not upheld by scientific research.

    Aside from upholding her PhD in unscientific psychobabble, Dr. Arroll has acting interests, such as co-starring in the likes of a short zombie-horror film, produced by Mad Science (a Freudian slip??). This is not the norm, although a personal choice, and does most assuredly add to the greater picture and question as to Dr. Arroll’s credibility–that which is already in question.

    A very interesting story line for this zombie-horror film that Dr. Arroll appears in with a co-starring role–a pandemic that was first ignored by government and media . . . (Freudian slip?).

  42. Ess says:

    P.S. All things considered–for a start–I wonder whose money backs this zombie-horror film co-starring Dr. Arroll. Opening up yet another can of worms–perhaps, the tip of the proverbial iceberg?

  43. Ren says:

    Sorry to write so much – I know there are far more pressing issues, and as always, thank you Jennie and to all who help circulate much needed info and recommendations for action.

    The medscape opinion piece is here:

    Also, I’ve only very superficially skimmed the American Psychological Association’s (APA) ethics guidelines (as an example), but I understand APA to make a distinction between professional and private behavior. APA guidelines are described as ideals that help shape professional behavior. Again, emphasis on professional though – so I think that’s good to know.

    There is an APA page though devoted to mass media violence and the negative impacts APA believes such violence to have upon society and individuals. In this sense then, it seems to appropriate to ponder possible conflicts-of-interest and influence of individuals with a foot in both camps. Like everything, I suppose it’s complex.

    Re the earlier-named film (2008), I’m disturbed by the violence, but also that the violence is directed toward people who are depicted as becoming monsters after (presumably) an infection of the nervous system. I can’t help but experience this scenario, in part, as part of larger narrative, which includes repeated failures on the part of governments and healthcare to treat victims of infectious disease in an ethical manner.

    I discovered a CDC essay (2013), which tries to validate the use of zombie imagery as a tool to discuss healthcare-related topics. Again I only skimmed, but there were several statements which I believe are not acceptable for a government publication, and I’m concerned that the medical profession’s casual relationship with zombies crosses a line where those with serious chronic illness are dehumanized — by the very people who’s charge it is, in part, to guard against this. (And dehumanization coupled with austerity of course is an even worse recipe.)

    For example, in this CDC paper, zombies are repeatedly compared to individuals with infectious disease; Individuals with “degenerative diseases, like rabies, Alzheimer’s disease, or even cancer…” are also compared to zombies (to elicat sympathy, according to the author).

    From the CDC paper:
    “…our former example of officials beating to death 50,000 potentially healthy dogs due to a rabies outbreak can be juxtaposed to the Kantian ethics behind killing potentially uninfected humans…”

    “…creating satirical or dramatic public service announcements to promote defensive community strategies against infectious disease outbreaks by using zombiism as an analogy; 3) using…[various media]…to enable the public to safely experience the natural progression of real epidemics on different levels of aggregation (e.g., individuals, communities, policymakers, medical and public health officials, both infected and uninfected), with and without intervention strategies such as vaccination, quarantine, or *extermination*;”

    “…Some of the [bioethical] guidelines explain the threshold at which a person can no longer be considered a human (e.g., being bitten by a zombie) and when and how to kill a zombie in a morally acceptable manner.”

    Again, sorry for the length. I understand there are bigger fish to fry, but I just wanted to note the above as kind of a footnote, should it be useful to someone at some future time.

    • Jennie Spotila says:

      Ren, this is actually quite interesting so I hope we can sustain the discussion as long as it seems worthwhile. I want to start by separating two of the issues you have raised.

      The first issue is that of professional ethics: what rules govern the “extracurricular” conduct of physicians and psychologists? The Medscape article didn’t seem to reach firm conclusions. He writes, “if a person with an MD uses that label to gain advantage over another in a power relationship or to gain a position of undue influence, that MD is obliged to follow the ethics and laws of medicine in that representation. If the activities are wholly unrelated to the MD label, perhaps the rules of that other activity, whatever it may be, override. But then again, perhaps not.” I wish he would take a position! I agree that if person is using their degree to gain influence or power, then professional ethics apply. But I think that in truly wholly unrelated activities, a lower standard applies. Certainly, I don’t think doctors should be making pornos (although undoubtedly some have). But unusual or unpopular hobbies (acting in bad horror movies, modeling one’s tattoos at conventions, riding a Harley, using a composting toilet at home – whatever) that are unrelated to the professional context should receive a lower level of scrutiny. Certainly if one objects to tattoos or Harleys or composting toilets, then one is free to seek healthcare elsewhere. But I don’t think it’s fair to conclude that a doctor with an unusual or unpopular hobby is automatically unprofessional.

      Part of why I am reacting in this manner is because both my husband and I have hobbies that might be unpopular or unusual to some people. My husband competes in target shooting, and we both enjoy scifi media and conventions. That may seem weird to people, but it doesn’t make either of us unprofessional. We’ve both experienced misunderstanding from others who didn’t like these hobbies, so I am sensitive to making similar judgments of others.

      The second issue you raised is about zombies specifically, especially in light of that CDC article. I actually found that article quite disappointing because it omitted many important aspects of zombies in media. First of all, George Romero’s film Night of the Living Dead was controversial when it was released in 1968 for its incredible race commentary. It’s a groundbreaking film, even now. Second, in several zombie films (I’m thinking specifically of World War Z, The Walking Dead, and 28 Days Later), characters make very difficult choices when other characters get infected. At least in those specific films, the killing of the infected is not callous or dehumanizing. The victims usually WANT to be killed before they turn. Once it is established that infection leads to “zombification,” the characters want to avoid that transformation to mindless killer. There is no cure in any of those films. You are infected, you become a zombie. So people have to kill their loved ones to save them from turning, as well as to protect themselves. That ethical angle is not included in the CDC article – and changes the issue significantly, in my view. The only analogy I can think of is killing a rabid dog to spare it the pain of its inevitable death AND to prevent the spread of infection to other dogs or humans.

      Zombies are actually a good tool for teaching about infectious disease because the topic is accessible to the general public. Many of these films portray epidemics in superfast motion, because there is almost no incubation period for a zombie infection. The analogy is closest to cell culture. In cell culture, a virus replicates and spreads very fast and the cytopathic effects can be observed over a short time frame, maybe 24 hours. Zombies do that but use humans instead of cells. For an audience that does not have a strong scientific background, it might make more sense to illustrate infection with zombies – at least to start. But I think that CDC article is a bit overenthusiastic about the opportunities for using zombies in public education. I would rather people actually learn the science!!!!

      You mentioned the larger narrative of dehumanizing the infected, and government neglect for the same. These are good points. Believe it or not, many zombie films actually point fingers at the government. For example, in The Walking Dead, the characters go to the CDC expecting some kind of help. The CDC admits they screwed up and can do nothing about it. It’s a moment of deep despair for the characters, and there’s no positive reflection on the government. In Romero’s Night of the Living Dead, and in 28 Days Later, the government either perpetrates more violence or abandons people to their fate. Actually, now that I think about it, I’m not sure there is a zombie film that portrays the government in any kind of positive way. That’s probably more likely in films like Contagion, where the government saves the day to some extent.

      I’ve probably wandered far afield, and this may be helpful to nobody. But you’ve given me good questions to think about, Ren, and I’m glad we’ve exchanged ideas here.

  44. Ren says:

    The CDC link:

    “Zombies—A Pop Culture Resource for Public Health Awareness”

    “…Ms Nasiruddin is a master’s degree candidate in the Program in Public Health at the University of California, Irvine. Her interests are neurological and psychiatric disorders and the integration of the arts and humanities in medicine.”

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