Awareness Reboot

Today’s post comes from Denise Lopez-Majano. She makes a powerful argument for the kind of awareness campaign we need.

rebootThe release of the Institute of Medicine report resulted in an unprecedented amount of media coverage and public discussion. As has long been the case, not all comments and discussion have been constructive. In fact, the nastiness of many attitudes held by the public and healthcare providers makes the case for a large-scale awareness campaign to correct misinformed views about patients and this disease.

In his post Alone in the Woods, Joe Landson aptly points out that we all have at least one “dear” friend who knows all about the simple way to overcome our disabilities. These people bubble over with bad advice. But in the 10 weeks since the release of the IOM report, I have seen scores of disparaging and demeaning comments, so many that it was quite difficult to cull just a few.

For example, there are published comments such as this, on an article in The New York Times:

me not frugal
California 25 February 2015

Those claiming to be suffering from CFS are often their own worst enemies. Even the writer uses the loaded word “ignorant” in reference to physicians who did not agree with her self-diagnosis. In my many years of dealing with chronic migraine and nerve pain issues — researching treatments, reading blogs, visiting the neurologist and other caregivers — I have come across innumerable self-diagnosed CFS martyrs, both in person and online. They tend to be people who rant, accuse, judge, whine, compete for who hurts the most, and hold on for dear life to that one thing that makes them feel special and deserving of sympathy. Chronic Fatigue Syndrome. The bald-faced truth is that CFS, whether it is a real medical condition or a compilation of malaise and unhappiness, is the life ring of attention seekers.

And these comments on a Medscape article:

Dr. Wallace Schwam Feb 10, 2015
Absent hard biological evidence, Chronic Fatigue Syndrome might [sic] lots of people as “Sick” who are in monotonous jobs, bad marriages, or plain bored with life.

Dr. James Weber Feb 10, 2015
A new name —–now “BIG PHARM” will come out with a new drug for it !! Oh…… I can see the profits rising !!!!! Nebulous disease, nebulous exam and no definitive test, prospective patients for life !!!! Whatever happened to SSRI’s ?

Views like those of Dr. Forbes, posted on an AAFP article about the IOM report, show up far too often:

Dr. Robert Forbes
3/5/2015 4:27 AM

I have been a family physician for 43 years.

Have practiced in rural Nova Scotia, the Canadian Arctic and Mississippi.

I am sorry but I don’t buy any of this!

I have had patients with chronic fatigue, fibromyalgia (which I call fibro- my life sucks!), attention deficit disorder, autism, chronic yeast infection, premenstrual dysphoric disorder, and now, systemic exertion intolerance disease. Try lazy!

All of them seem to want disability, disabled parking stickers, amphetamines, narcotics or Xanax. And they usually get them only to add to their problems.

I fear we contribute to this in a big way by legitimizing their complaint.

We have become a very dependent society, and I am ashamed and concerned.

Fortunately I am semi-retired and fear no retribution for my free speech.

I did try to be respectful.

Thanks for the opportunity.

Just saying…


Dr. Forbes apologized in a second comment claiming he felt like venting to colleagues–but he vented in a public forum. The truth is that wherever he was venting, his comments are demeaning and derogatory.

It is completely inappropriate for healthcare professionals to speak publicly and disparagingly about patients. People must stop blaming patients for what they (HCPs and others) don’t yet understand. Indeed, the IOM report called out problems with views held by healthcare providers:

…a 2011 study found that 85 percent of health care providers still believed the illness was wholly or partially a psychiatric rather than medical one (Unger, 2011). Numerous studies also have documented skepticism among clinicians about ME/CFS being a distinct clinical entity (Bayliss et al., 2014). (p.257)

A third type of misinformation that must be addressed involves things like this tweet from 26 February 2015 by the Office of Women’s Health (OWH), which conflated chronic fatigue and ME/CFS:


#Chronicfatigue is real, and women are 2–4x more likely than men to be diagnosed with it.  #MECFS

It took the efforts of several advocates to get OWH to delete one erroneous tweet sent on behalf of the office that houses the CFS Advisory Committee (CFSAC). One would think that of all places within the Department of Health and Human Services (HHS), OWH as home to the CFSAC would disseminate accurate information. If OWH spreads incorrect information, there is obviously much to be done to ensure that all of HHS and its agencies understand this disease.

As a community, we don’t have the wherewithal to address each comment, or to educate each healthcare professional. The problem is far too widespread for our scant resources. And if we don’t have the capacity to educate healthcare professionals, it follows that we don’t have the capacity to educate the general public.

We must stop playing “whack-a-mole”.

The changes needed are far more extensive than simply a revised CDC Toolkit.

Mary Dimmock believes a policy reboot is necessary. I agree.

I believe that one component of the policy reboot must be a national awareness campaign. It must be a top-down, comprehensive, authoritative, fully-funded education campaign, one that is emphatically endorsed by HHS and that is clear about the disease under discussion.

A wide array of stakeholders (including patients, advocates, clinicians, and researchers) must be equal partners, in full and open collaboration with HHS in the development, implementation, monitoring, updating, etc. of the entire campaign.

The campaign must point only to validated criteria/material, and must be unequivocal that this is a physiological illness that causes severe disability and a heavy economic impact.

The campaign must include a timeline with clear objectives and goals, as well as provisions for accountability and consequences. It must incorporate an effective means of assessing the campaign’s progress and effectiveness.

In order for this campaign to be successful there must be several areas of focus:

  • It must penetrate throughout HHS and each of its agencies.
  • It must educate healthcare professionals in all specialties, professional organizations, professional/scientific journals, continuing medical education, medical schools, insurance providers, and licensing/accreditation bodies for healthcare professionals, as well as school nurses, pharmacists, home health professionals, and so forth, and must improve public and institutional policies.
  • The campaign must have a public education component.

Each component must address stigma, bias, and misconceptions as well as emphasize assessment and knowledge of this disease, and the need for appropriate diagnosis and care. This campaign must nurture a culture of responsiveness and understanding.

The IOM report suggested the:

Designation of an HHS Point Person

HHS should consider appointing an individual to oversee the dissemination of the new diagnostic criteria nationwide to health care professionals (i.e., a “SEID” czar, within the department). This person should have access to the necessary resources and the authority to implement the dissemination plans for the new criteria and address any questions or concerns that arise. Having such an individual in place will also help demonstrate HHS’s responsiveness to this issue. (p.268)

To be truly effective, I think the campaign must be broader than what is suggested in the IOM report. HHS must partner with stakeholders to develop, implement, and aggressively disseminate a comprehensive education campaign designed to eradicate stigma and bias associated with ME/CFS. It must be absolutely clear about the disease and have the wholehearted endorsement of HHS. It must be fully funded, fully staffed, and take the time required to achieve the necessary changes in negative attitudes among healthcare professionals and the public.

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30 Responses to Awareness Reboot

  1. Merry Speece says:

    Terrific post, Denise. Thank you.

  2. Cecelia says:

    The evidence of ignorance, prejudice, misinformation and lies continues to be discouraging and destructive, yet the tide will probably not turn until biomarkers and effective treatments are achieved through scientific research finally getting an accurate picture of what is wrong, especially learning what are the drivers of this illness. Absolute cause has been a red herring for years–unobtainable–but identifying the current drivers of illness which has gone on for years–current drivers–should be achievable. With that–biomarkers and treatments follow. On the other hand, research that just nibbles around the edges, or that starts from ignorant or erroneous premises, keeps us in the hole we are in. So, before the big campaign to change views, I still think we need some powerful research.

  3. Chris says:

    Thanks, Denise, for an excellent piece–with some very disturbing comments recorded, some almost ranking with that appalling blog by Edward Shorter a while back. But how to persuade HHS to pursue such a program? I think there is a good body of research now to document some of the real issues–including the recent paper from Julia Newton’s “muscle gymn” and the classic papers on 2 day VO2 Max and so on. But how to get the good stuff circulated–the IOM report is an excellent one, but too long to try to persuade all doctors to read. The CDC website might be a good home for a short version, in other words a revised “toolkit”–might that be something, already requested, to focus on now?

    • Denise says:

      @Chris – I am open to ideas on how we persuade HHS to undertake this campaign.
      As for the CDC website being a good home, many healthcare professionals go to UpToDate, or Medscape or colleagues, etc rather than the CDC site so while I think the CDC site needs to have (only) validated and appropriate information, I think what we need requires a broader reach than just info on the CDC site.

  4. PKKühl says:

    STUNNED!!thats all

  5. billie moore says:

    Denise, while all you say is true regarding the terrible comments that reflect the ignorance of the general public and physicians about this disease, I cannot agree that what we need is an awareness campaign. This was done before, in about 2004-06 by the CDC under Reeves. What did it get us with an expenditure of, I think, $4 million and a national campaign of the CDC and the CFIDS Assn? Nothing that lasted until 2015, for sure. That money could much better have been spent on research into causes and treatments. Now, there is even less money designated for ME/CFS in the NIH budget and probably far less in all the HHS dept. budgets which could be used for such an awareness campaign than there was at that time (relative to inflation and more recent Congressional funding cutbacks). And now there is even more need for money for research, Centers of Excellence, and new physician guides (the IOM Clinician Guides are a fine place to start) for national dissemination. The doctors need training in this disease! That is much more needed than a public awareness campaign and would be far more helpful to patients than an effort to better educate the general public.

    What we need is a campaign focused on the HHS depts. to get an assertive, ME/CFS-knowledgeable point person designated to coordinate those items listed in the IOM which will really help patients. We need to use some of the many undeniably good recommendations and thoughts in the IOM study, because we are very unlikely to get any HHS support if we dismiss or simply ignore what that study has to offer. We don’t have to love the name; we don’t have to agree on the diagnostic criteria. But with focus, we can help change both of those in the near future and get the information out to educate those who need it most – the doctors.

    • Denise says:

      Billie I don’t think this campaign is “all” we need – in fact I say above that I view it as a part of the necessary policy reboot proposed by Mary Dimmock.
      I believe that doctors (and other healthcare professionals) will be more willing to learn about this disease and refer patients to COEs if they are aware of the severity of this disease.
      To educate healthcare professionals, we must engage professional organizations, journals, healthcare schools and curriculum, continuing education, and more in order to get patients appropriately referred to healthcare professionals who can help patients manage this disease.
      Awareness will also draw more people in to do the sort of biomedical research that is needed.
      This campaign must be broader than a single point person designated by HHS to disseminate the IOM report. We must be part of this campaign to ensure that the information disseminated is appropriate. Being part of it will also mean greater visibility for us all which may in turn help spur things along.
      The campaign must have clear objectives and goals, a timeline, and metrics for assessing effectiveness. There must be accountability. (I don’t know if the 2004-6 campaign included the above.)
      I wholeheartedly agree more funding is needed for biomedical research. Despite lean times, NIH has been able been able to find significant funding increases for research in certain areas. And NIH and HHS both found money for things such as the IOM and P2P projects.
      I see this campaign as an integral part of what is needed for us and I think HHS should take this on as an extension of the IOM project (with us as full partners throughout the campaign).

  6. Tina Tidmore says:

    So much attention has been given to other parts of the IoM’s recommendations that many forget about the dissemination Czar recommendation. I really think this is the key. the IoM criteria and name and physician guidelines are an improvement over Fukuda-CFS. It’s not perfect, but it’s better. Perfect requires more science, more money, and more time. What do we do in the mean time? I say we push, as Denise says here, for this czar and more. Just educating docs and the public about the strange sickness symptoms from activity or stressors (vaguely called “post-exertional malaise”) will be big. it is the key to our disease and the least understood part of our disease.

  7. Betsy says:

    So discouraging to read those comments, and to think they’re just a few of many. Doctors sure can be arrogant and illogical.

  8. Rebecca says:

    Thank you. It’s good to document these bigoted comments, using the commenters’ real names where possible.

    Don’t forget Ed Shorter’s bigoted rants in Psychology Today this winter.

  9. marcie myers says:

    I continue to maintain that until my diagnosis is taught in our medical universities as well as to practicing physicians that any campaign will be to little avail. Dr. Unger is/was in charge of seeing to it that CFS or ME or SEID is included in the medical school’s curriculum. I await that day. marcie

    • Denise says:

      I agree that this disease needs to be taught to healthcare professionals but I think we must be clear that those who teach it must not be biased against the disease as they would likely pass along that bias to their students.
      To ensure that such bias does not creep into curriculum I believe that we must be part of the campaign so as to make certain that stigma and bias are eradicated and that appropriate material is taught to healthcare professionals (physicians included).

      I was not aware that Dr. Unger is in charge of getting this disease included in curriculum. That is very interesting – please share your source(s) on that info.

      • marcie myers says:

        Hi, Denise. About 2 years ago I spoke on the phone as a patient advocate to the CFSAC members regarding the need for medical school curriculum. Shortly thereafter, I received an email from Dr. Friedan, Director of CDC, telling me that Dr. Elizabeth Unger who heads the CDC division that CFS/ME/SEID falls under (chronic illnesses) was in charge of developing the medical curriculum. She has confirmed this with me via email as well as a phone conversation. However, once the modules for curriculum are tested out and ready, the American Association of Medical Universities AAMU must approve it as well. I know that in a recent article by Cort, Dr. Unger mentioned once again that she is working on this medical school curriculum. As to when it will be ready, I haven’t a clue. And as there are no protocols for treatment currently, all it can consist of is proper diagnosis.
        The IOM has helped push this issue of education forward and I am most grateful for that.
        Another curiosity is which specialty will assume the responsibility for those of us with this debilitating illness…. immunology, rheumatology, infectious diseases…. and that has yet to be under consideration to my knowledge. marcie myers

  10. billie moore says:

    Denise said, “This campaign must be broader than a single point person designated by HHS to disseminate the IOM report.” I was not suggesting one person do the entirety of disseminating information. Rather, one person is needed to coordinate the efforts of any and all HHS depts. in getting out the new information to all the professionals who need it, including school nurses, etc. regarding Pediatric patients. And, it goes without saying that this person and those departments should be working in concert with the patient community to determine things like content, who gets what, which dept. sends what, etc., which has rarely been done; even CFSAC gets no real input. There must be a czar, because these HHS departments work entirely alone and never seem to speak with, much less coordinate with the other depts., it seems. For instance were both IOM and P2P necessary? (Never mind that neither was probably necessary!) Without a lead figure, with authority, it would be like having a war fought with no supreme commander; every service would have their own plans and be going in their own direction, which is exactly what the HHS does now.

    And I still oppose a general public awareness campaign. There are much higher priorities for the very few dollars being thrown our way.

  11. Lisa Petrison says:

    In terms of its substance, the IOM report was a step forward. Not a huge step, but a significant step.

    In terms of the way that the disease came across in it to casual readers such as physicians, the IOM report was not any sort of step forward at all. I would argue that it actually was a step backwards.

    The name “SEID” never was going to get any respect from anyone, especially from medical professionals.

    And while there is some appeal in the idea of stripping down the criteria to something simple that doctors could remember easily, the items that were chosen seem so genetic that they inevitably were going to reinforce the beliefs of skeptical professionals that the disease is nothing special after all. And that we are being whiners for wanting it to be taken seriously.

    These were avoidable mistakes. The committee had the chance to do this right and – from a marketing point of view – they failed. As these comments pointed out by Denise demonstrate.

    We all knew deep down – be honest now, didn’t we? – that the name and the oversimplified criteria were a mistake the moment that the report came out. And for anyone who wasn’t sure, the problem became even more clear in this report.

    Nonetheless, many influential advocates in this community decided that it nonetheless was a good idea to support the report unconditionally for fear of losing its good points, rather than to criticize it openly with the goal of making it better.

    My own feeling was that this was not an either-or choice that had to be made.

    My own feeling was that it was possible to praise the substance of the report in terms of its taking the disease seriously – while at the same time pointing out that the name and the definition made this disease look trivial and silly to casual readers, including medical professionals.

    And then to figure out what to do about that problem, so that it wouldn’t continue to be a problem.

    Maybe CFSAC and HHS will end up fixing the problem, without these influential advocates having helped out. Miracles do happen.

    But regardless, we do not, in my opinion, need an awareness campaign. That is the last thing that we need.

    We need to fix the marketing problem that the IOM committee left for us. Which is not an awareness problem. At all.

    Thank you, sincerely, to the IOM members. They had good intentions and in general wrote a good report.

    But in terms of marketing, they left us with a mess. And one that needs to be fixed.


    Lisa Petrison
    Ph.D., Marketing/Social Psychology, Kellogg School of Management, Northwestern University, 1998
    Assistant Professor and Director for the MS in Integrated Marketing Communications Program, Loyola University, Chicago, 1998-2001
    ME patient, 1994-present

    • Jennie Spotila says:

      So the “silence” of unnamed “influential advocates” will be to blame if CFSAC and HHS don’t fix the problem? Despite the fact that many influential advocates have been very critical (publicly and privately) of the report? If we’re going to blame unnamed “influential advocates,” shouldn’t we also blame those who refused to speak to IOM directly? Perhaps a large scale name survey would have influenced them. Perhaps raising issues about marketing and change management would have helped IOM avoid creating some of the obstacles that they did. We are facing long-term entrenched prejudice against our disease and against us. Even a perfect IOM report would not have solved that problem. Even a perfect marketing campaign will not solve that problem. There is more than enough blame to go around, but laying that at the feet of any “influential advocate” is misplaced, regardless of whether they agree with the report or not.

      • Lisa Petrison says:

        I don’t think that anyone is wholly to blame for anything to do with this disease. It’s a mess from start to finish.

        But it certainly is my understanding that there is a coalition of influential advocates who made a united and purposeful decision to publicly support the IOM report without reservation despite its flaws, and to work to persuade (or in some cases attempt to coerce) others in the community to do the same.

        That does not mean that everything that is wrong with how this disease is treated is those advocates’ fault. I most certainly would not say that!

        But from a marketing perspective, how the IOM report positions the disease to casual onlookers is in my opinion a serious problem.

        Insofar as the continued position of certain influential advocates results in this problem being shoved under the rug rather than fixed, I do think that it is reasonable that those advocates should take some responsibility for the ramifications of their decision.

        In general, I believe that insofar as people are trying to change negative public perceptions about something, consideration of marketing issues is important.

        Important enough that the IOM committee members should have considered them in their decisionmaking.

        Important enough that the coalition of influential advocates should have considered them in their decisionmaking.

        Saying “We need an awareness campaign” is not marketing. Because awareness is not the marketing problem we face.

        And especially with the history of this disease, some savvy marketing is going to be needed if progress is to be made.

        When the influential experts and the influential advocates realize that, maybe we’ll start getting somewhere.

        In the meantime:

        Yes, I will take my share of the blame for not doing a naming survey a year ago, so that the panel would have had the results at their disposal. Probably it wasn’t in their million dollar budget to pay for one, even if they had thought it was important, and so would have needed someone like me to do it for free if it was going to be done. And just because they didn’t have enough respect for marketing to have asked me doesn’t mean I shouldn’t have done it.

        Of course, not being able to test a specific name since the committee likely would have been unwilling to share their contenders with me would have made that a little difficult. But perhaps I could have come up with a survey that would have provided valuable information to them anyway, if I had put enough thought into it.

        Usually people only get blamed for what they actually do (e.g. serve on a committee that writes a report or work in unity with others to stifle criticism of that report), rather than for what they fail to do.

        But in this case, I do wish that I had done a naming survey a year earlier than I did, and I’m willing to accept a substantial part of the blame in this fiasco as a result of my not having done that.

        • Jennie Spotila says:

          there is a coalition of influential advocates who made a united and purposeful decision to publicly support the IOM report without reservation despite its flaws, and to work to persuade (or in some cases attempt to coerce) others in the community to do the same.

          That sounds like a cabal or conspiracy. And that is a very serious allegation to make. I certainly know individuals who have decided to support the report without reservations, just as I know individuals who reject the report without reservations and others who are somewhere in the middle. But a coalition that made a coordinated decision and is now convincing or coercing others? Like Mary, I am not aware of such a group. I am wary of conspiracy theories without supporting evidence.

        • billie moore says:

          I have not found two advocates or patients who “support the IOM report unconditionally” or who agree on the facets we like or don’t like. We would be better off if the majority of the community was either for or against it pretty solidly. Then we would have a clear course of action. However, as it stands, we have thousands of differing opinions and no clear path forward. What are we even going to ask of the HHS that was recommended or discussed in the report – more funding? Centers of Excellence? Correct information on the CDC website for the use of the public and medical professionals? Epidemiological studies of the prevalence of the disease among adults and young people (two studies) in the U.S.? So far there is no consensus and no plan of action. I do know though, that just to disapprove and work against the IOM report with no positive feedback to or requests for action from the HHS is going to have the community in the same situation in 20 years as we have been in the last 30 years – bed bound, housebound, suffering, and dying. How can we get the HHS FINALLY to get cracking on treatment approvals, significantly more funding from the NIH, better education of medical professionals, etc.? The HHS is our place to push, not each other.

  12. Betsy says:

    There sure are some intelligent women on this blog. I wish I had a fraction of your wonderful minds!

  13. Mary Dimmock says:


    I agree with your point that the IOM report failed from a marketing perspective. While part of the failure was due to the name and criteria, I think the other huge aspect was that IOM failed to consider the magnitude of the bias and entrenched misperceptions and account for those factors in its initial communications plans.

    I also agree that this was important enough that it should have been accounted for. But speaking for myself, I know that I did not submit any comments to the IOM to recommend that this issue be addressed in the initial communication largely because it was not clear at that time how the initial communication would go. I’d be surprised if anyone submitted comments on this to the IOM public file.

    Regarding an awareness campaign versus a marketing campaign – I dont have a marketing degree but when I read what you and Denise each said, the labels may be different but it sounds like you are both talking about the same problem – changing the narrative on this disease in a coordinated, focused way.

    Regarding your view that there was a united and purposeful decision to support the IOM report by some group of named advocates… what I’ve seen is a wide range of opinions on the IOM report. I know of no “united decision” to push the IOM report and “sweep these issues under the rug.” As Denise’s blog points out and you acknowledge, the fact that ME continues to be swept into the CFS wastebin is a serious issue that must be addressed if we are to change the future of ME patients.

  14. Kathy D. says:

    Wow! These comments put out on social media and elsewhere by doctors are really stunning and alarming. After all of our advocacy and speaking out, the IOM panel’s report and the test results and knowledge expressed by Dr. Jose Montoya, Drs. Madi Hornig and Ian Lipkin, the Lights, Harvard Medical School, Dr. Peterson, Dr. Cheney — and so many more in the U.S., not to mention in Australia, Japan and elsewhere, there are still naysayers. Not only naysayers but “medical” professionals who are
    destructive. I can’t even imagine a poor patient seeing one of these doctors and leaving, feeling scolded for being sick. What is wrong with this people whose
    motto is supposed to be “First, do no harm!”

    I just personalized and sent on a letter to HHS. It was adapted from a very good form letter sent to me by Courtney Miller. It calls for massive funding for research for CFS.

    The above remarks by doctors are another reason why it’s important that HHS respond positively to the IOM report and define our disease and its symptoms accurately and make recommendations to health care professionals. I wonder
    how widely the IOM report has circulated to doctors and other medical workers.

  15. marcie myers says:

    It appears that many people are demanding something that isn’t available yet: testing that will 100% indicate a diagnosis of CFS/ME/SEID. Any of you reading the research should be aware that this is all it is at this point. Research with mixed results, subsets, some cytokine elevation indicating an inflammatory process, some PET scans indicating brain changes, some immuno changes in NK cells, and on and on. This will remain a diagnosis of exclusion for a good while longer. Unfortunately, it’s not going to be as easy as finding brain lesions on MRI and diagnosing MS because this is a multi-system illness and no one has discovered its origins. Until then, the IOM came as they close as they could to making a hard statement about what is known: that our various body systems are unable to toleration mental or physical exertion. What more can be stated with assurance? I’d like to hear from some of you regarding the current state of what we really do know for sure about this disease. Mayhaps I’ve missed something. marcie myers

    • Tina Tidmore says:

      Marcie, you are right. And by the way, diagnosing MS is not as straight forward as many think. I have a friend who had MS for 6 years before she was diagnosed. Bladder control problems were the first symptom. The lesions in MS brain are not as constant or easy to find, also.

      The difference with our disease is that our symptoms are not distinctive, or so it has been said. MS has motor control and blindness. That’s not commonly seen in other illnesses. So when a person has noticeable blindness or motor control, it’s easier to diagnose even without a lesion shown on an MRI. Similar with Huntington’s disease. The shaking gate and history of psychiatric problems are distinctive. Similar distinctive signs and symptoms in Alzheimer’s and Parkinson’s. Admittedly, most often the disease has to progressed a while before these distinctive features of these other diseases are seen. So a person will have one of these diseases for quite a while with symptoms so mild they are not attributed to a disease or other symptoms leading the docs to pursue another diagnosis.

      This is why I like the IoM report, criteria and name (although they aren’t perfect). I think that the activity or stressor-induced sickness symptoms should be the focus because when it is understood, it distinguishes our disease from others that have fatigue, body aches, headaches, etc.

      • marcie myers says:

        And didn’t the IOM make specific statements regarding the need for education of medical students and current practitioners? And an urgent call for more funding? I didn’t read the entire report but what I did read indicated that they took it as far as they could given the current research.

      • marcie myers says:

        Hey there, Tina! Long time no hear or talk. After 20 years, my fever went away except for one day when, of course, I panicked. Not well but it sure feels better. Have no idea why. I already said that I only read the IOM summary but found it to be as well developed a plan with strong suggestions to HHS and the CFSAC (?) as any before. I only wonder why they didn’t add the inflammatory note as I’d thought this was becoming an accepted measure but mayhaps insufficient studies. I do wish that the CDC would remove our diagnosis, whatever the name, out from under “chronic illnesses” where it’s lumped with heart disease, diabetes, etc. and put it under its own division along with MS, Lupus, Parkinson’s and other assumed autoimmune diseases. At least the division head, Dr. Unger, seems to have climbed on board finally and is charge of developing the medical curriculum which I believe she’s working on now and this may have even been the reason for calling the IOM forth. Remember that great video that you handled to get it distributed? So, how are you? Heading up any orgs? I generally only read Cort’s stuff because I can only focus on so much…. and so much in-battling. Catch ya! Marcie

  16. Rivka says:

    A big thanks to Denise for this blog post — all her activism. She is one of the few parents of children with ME who is out there on the font lines, fighting for us patients. I feel deeply indebted to her and the other parents working to help us.

    • marcie myers says:

      Several years back there was a contest re: who could produce the best CFS PSA to be distributed to local TV stations. The best one was selected (y’all ask Tina Tidmore the details) but I believe that very few people participated in seeing to it that it was distributed to their own local TV channels. I managed easily to get in contact with the local PSA person and the CFS info video was subsequently shown on 3 local stations in Augusta, GA as well as several in Columbia, SC. I’ve been game for a billboard PSA for a long time now as the billboard companies will do them at cost which ends up being quite affordable for an organization. Doing nothing…. well, you know the deal there. Time for another PSA CFS/ME/SEID video contest with people seriously participating in seeing to it that their own local channels show it. Done!

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  18. marcie myers says:

    On May 16 I received a phone call from a friend who’d seen a CFS PSA on one of our local TV stations. Does anyone know where it came from? I unfortunately did not see it. marcie

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