Credit: Robert Van Vranken
The IOM panel on ME/CFS held its second (and likely final) public meeting on May 5, 2014. On display near the meeting room was this painting by Robert Van Vranken: Untitled (Everything at once, or one thing at a time?). (read more about the painting here) Written on the wall within the painting is the beginning of a quote from Prometheus Unbound, “Hear the sum of the whole matter in the compass of one brief word . . .”
To hear the sum of the whole matter in one brief word: this is precisely the challenge before us. How do we convey the full sum of ME/CFS – all of the issues, science, suffering, truth – in a brief word? When we say ME or PEM or cognitive dysfunction, will the IOM hear the full compass of what we mean? And can their diagnostic criteria – in a few brief words – transmit the fullness of that knowledge to the world?
This was the overarching theme of the public session on May 5th: communicating the reality of ME/CFS, and the uncertainty over whether the message was heard.
Agenda Structure
The agenda for the meeting was organized around gaps in the panel’s knowledge. A patient panel was asked to address obstacles in interacting with the healthcare system. Dr. Leonard Jason presented data on challenges and issues in the diagnostic criteria. Dr. Akifumi Kishi presented on sleep disturbance and Dr. Gudrun Lange presented on neurocognitive impairment, two issues that rank high in studies of ME/CFS symptoms. Every invited speaker was given a list of questions by the panel to answer in their presentations.
Taken as a whole, the speakers emphasized the core symptoms of PEM, sleep disturbance and cognitive impairment, and Dr. Jason addressed key issues in devising diagnostic criteria. These are critical areas for the committee to consider. Some advocates asked why no immunologist or expert clinician like Dr. Peterson was invited. But there are committee members with that expertise: Dr. Klimas for clinical immunology, and Drs. Klimas, Bateman, Lerner, Natelson and Rowe for experience treating people with ME/CFS. The panel does not have expertise in sleep or cognitive impairment, and Dr. Jason’s expertise in ME/CFS criteria issues is unparalleled. The meeting agenda structure plugged some of those holes for the IOM panel.
Patient Presentations
Two patients (Joe Landson and Bob Miller) and two caregivers (Denise Lopez-Majano and Annette Whittemore) spoke on the obstacles that ME/CFS patients face in diagnosis and healthcare. The presentations were moving, and all four acknowledged their good fortune in being able to get as much from the healthcare system as they have.
Joe Landson and Annette Whittemore pointed out that patients usually know more than their doctors, but remain hopeful that they will find help and confirmation of the diagnosis. Annette told several stories about doctors refusing to offer treatment to her daughter Andrea because she carries the CFS label. Denise Lopez-Majano talked about how doctors gave her no guidance on how to care for her sons or help them recover. Even basic advice about PEM and cognitive impairment would have reduced their suffering. Bob Miller described how it wasn’t until he found Dr. Peterson fifteen years after getting sick that he finally received adequate diagnostic testing and treatment.
Both cognitive impairment and PEM featured prominently in the presentations. Joe talked about how the “clutch in his brain has snapped,” and that even simple cognitive tasks are now beyond his capabilities. Denise described her son Matthew losing focus while speaking or eating, as if “his brain was stuck on hold.” All the panelists described the unpredictability and severity of PEM, offering specific examples. I’m not sure if the IOM panelists keyed in on the significance of one of Denise’s comments: that her sons were prescribed exercise only after they were diagnosed with ME/CFS.
Dr. Lily Chu and Dr. Klimas were both interested in the presenters’ thoughts on the name of this disease. While all four were emphatic that “CFS” should be abandoned, only Annette Whittemore offered an alternative: Ramsay’s disease. Denise, Bob and Joe all declined to specify what name they preferred. Many advocates saw this as a squandered opportunity. None of the speakers addressed the fact that ME already has a diagnostic code, nor did they connect the name question back to the diagnostic criteria.
The sense I got was that the speakers felt put on the spot by the name question, as if they were being asked to speak for the entire advocacy community, but I think they could have offered their own opinions. The IOM requested we address the name question in written comments for this meeting. In my own written submission to the IOM panel, I said, “If your case definition resembles the traditional definition of myalgic encephalomyelitis, as I believe it must, then I urge you to retain the traditional name as well.” I hope many other people expressed their opinions, too.
Dr. Jason and Criteria Challenges
Dr. Jason was asked to address many questions in his presentation, and given only 30 minutes in which to do it. I strongly recommend watching the video of his presentation to get the full details. In my opinion, the most important take away was the issue of reliability and criterion variance.
Studies have shown that anywhere from 50-90% of people who meet the Fukuda definition also meet the Canadian Consensus Criteria. Dr. Jason said that one possible explanation for this wide variation is that doctors are not applying the criteria consistently. Without an agreed upon set of biomarkers or assessment tools, there is potential for great differences in the actual application of any case definition.
One way to solve this problem is with an assessment tool like the DePaul Symptom Questionnaire. Dr. Jason presented data showing that the DSQ can distinguish between ME/CFS and depression with 100% success. However, the DSQ is not as good at distinguishing ME/CFS from autoimmune diseases like lupus or multiple sclerosis, and his research is ongoing.
Another way to create better diagnostic criteria is to use frequency and severity cutoff scores. This means that we don’t just ask if the person has a symptom, such as dizziness. We have to ask how frequently the person is dizzy and how severe the dizziness is. Dr. Jason presented a powerful slide showing that when a definition requires symptoms to occur a little of the time and be mild (referred to as 1/1), almost 34% of healthy controls meet the Fukuda definition. But when symptoms must occur about half the time and be moderate in severity (referred to as 2/2), healthy controls are almost completely eliminated.
The many questions from the IOM committee members may give us clues about what they are grappling with behind closed doors.
- Why is PEM not reported by 100% of patients? Answer: self-report questionnaires are not perfect, patients may have adapted coping skills to reduce PEM, or it may not be present in 100%.
- Is both frequency and severity required? Answer: identifying low frequency is important because it is less debilitating to patients.
- Impact of even higher cutoffs, gradual onset, psychiatric comorbidity, gender, ethnicity, controls, and good day vs. bad day? Answer: much of this has not been studied, and data is limited by the collectors (such as biobanks).
- How do we create a definition that is not too complicated for clinicians to use? Answer: focus on the core symptoms, and give doctors tools like questionnaires and scoring rules to help them make the diagnosis.
This issue of creating a simple definition came up during the patient presentations, too. Several people supported a one sentence description of the essence of the disease. In order to be inclusive, subtypes were suggested as ways to separate patients within that broader category. To be honest, this makes me nervous. It opens the door to a broad definition, with subtypes used to truly delineate those with this disease. I’m not sure that’s much different from what we have now. However, Dr. Jason did present his data on the core symptoms (PEM and cognitive dysfunction), and showed that other symptoms may cluster patients with immune or autonomic abnormalities. That paradigm was well reflected in the patient presentations.
Sleep and Cognitive Dysfunction
Following in the theme of core symptoms, Dr. Akifumi Kishi presented his data on sleep dysfunction in ME/CFS. I found his presentation very difficult to follow, and was disappointed that he did not provide a more comprehensive survey of this area of research. His data show that ME/CFS patients have abnormalities in their sleep stage transitions, but not in the actual stages themselves. The data also show that ME/CFS patients slept better after exercise, which is completely at odds with what many of us have experienced.
Dr. Kishi was pressed hard by the panel on multiple issues related to study design, statistical power, outcome measures, and comparison to overtrained athletes. Dr. Kishi could not answer many of these questions due to a lack of data or failure to consider the issues during study design. It was disappointing that his studies have been so small and so preliminary, and I’m not sure how useful this data will be to the IOM panel.
Dr. Gudrun Lange gave an overview of cognitive dysfunction in ME/CFS, including her fMRI studies and patient evaluations. Overall, her data show that ME/CFS patients have impaired processing speed and working memory. In untimed tasks, they show little impairment. Decreased attention and concentration, less information available “online,” and an inability to organize learning and make quick decisions are all manifestations of the dysfunction. Her imaging studies show that even when ME/CFS patients complete the same tasks at the same level as healthy controls, they need to use more of the brain to do so.
Dr. Lange was questioned on comparisons to other groups, such as sleep deprived controls and patients with fibromyalgia or ADHD. She also highlighted the differences between ME/CFS cognitive dysfunction and those with dementia or stroke. ME/CFS patients are very different, and testing conducted by neuropsychologists not familiar with the disorder can appear to give normal results when the impairment may actually be severe. While Dr. Lange said that no short form testing has been validated in ME/CFS patients, she suggested giving a patient 6 or 7 steps of complicated driving directions and asking them to repeat it back. We rarely can.
It was fitting for the meeting to end on the subject of cognitive dysfunction, since that had been a significant focus of the patient/caregiver panel. And I can share one example of my own cognitive fallout from attending the meeting. I traveled to the meeting with a friend by car (unable to hold directions in my head, as Dr. Lange had highlighted). I had the following text exchange with my husband after a pit stop on the way home, perfect evidence of me losing focus and substituting words:
The Elephant Not In The Room
One audience member commented to me that this meeting was very different from the January public meeting because of the absence of protesting advocates. Bob Miller said during his remarks that patients are protesting the meeting because they have no faith in the system. If the patient community actually believed the IOM process would help them, Bob said, the room would be filled.
My position on participating in the IOM process is well-known. I’ve been criticized for it, as were the advocates who chose to participate as panelists at this meeting. I won’t revisit the controversy in detail here. All I can say is that while some people noted the absence of many advocates, that absence made it easy for the panel to focus on its own agenda. When they asked for opinions on the name, they only heard the uncertainty of several panelists and whatever was submitted in writing. Anything the other advocates would have said was simply lost. Those of us who have chosen to provide input to the committee are trying to represent the diversity of opinion in our community, but I’m sure we are not fully successful.
“Hear the sum of the whole matter in the compass of one brief word.” Have we done enough to tell the IOM panel the truth about this disease? Have we done enough to point them in the right direction, and give them evidence sufficient to reach the right conclusions? Were the protesters heard through their silence? Have we been effective in combining the power of that silent protest with input from those willing to speak and write to the panel? Will it be enough?
We can only guess, and hope, and try, and wait.
Good Summary Jennifer. I did think this Public Meeting provided some great information. I know I heard many important topics that helped me to realize cause/effect, symptom behaviors/quality of life, and biophysiological understandings of the disease as I live these 10 years now. It was useful to make those connections for myself. There are several things I would draw attention too from your enlightenment and that of the meeting.
First, there are 3 subtypes that surfaced from my perspective. They noted the ME/cfs et al Community as those who approve, and those who disapprove of this IOM approach by HHS. The third group is the invisible elephant out of the room, that being those of us who wanted to be there for support and advocacy, but are not well enough and/or can not afford to journey in person due to loss of income. There is power in numbers just as a demonstration of the severity and enormity of the spread of this disease. I wish the room would be stack packed with as many people with this disease, just to make that awareness on the record whether we agree, disagree or are on the fence about the IOM Mandate.
This issues of numbers of afflicted individuals crossed my mind when Dr Jason was presenting. in your quote of one part of his response is the following statement: ”
Dr. Jason said that one possible explanation for this wide variation is that doctors are not applying the criteria consistently. Without an agreed upon set of biomarkers or assessment tools, there is potential for great differences in the actual application of any case definition.”
While he was making his impressive presentation, I sensed an overwhelming fear that the inexperienced/biased Panel Members would interpret much of it to a somatic mental health diagnosis. My thought was that once a truly identified 2-2 Case Diagnostic Criteria is published. Perhaps to Force Feed the Health Care Providers across the Medical Profession, this should be a “Reportable Disease”. I looked at this list of which there are 60 Reportable Diseases that include Lyme Disease, Q-Fever, Poliomyelitis, and my personal two favorites, Tetanus & Diphtheria. If this could be done, it may give us more accurate numbers of people and areas where there are higher prevalence of ill people. More importantly, Providers will have a check list of what to look for in a patient, how to diagnose and then treatment can be determined quickly and accurately. Nor more of this “All your Tests are FINE!” malarkey.
Another benefit is that Providers will be held accountable to acknowledge this Disease. No more change-ups of basic idiopathic chronic fatigue, and mood disorders. We do have to accept that if an individual had a mood disorder pre-illness, and then become ill with ME/cfs et al, that they still need interventions for the mood disorder but it should not rule out a new diagnosis. The only exception I would make to this is that, I believe, way too many people and caregivers develop PTSD because of the treatment they receive during the initial onset of their illness and the 10-15-30 years of denial by the treating professionals. Hopefully the Reportable Diagnosis list will look at cognitive impairment without venturing into mental illness as well as mandate required lab testing beyond the basic, proper Specialty Referrals early in the disease, and greater respect of the nature of the beast within us.
Finally, the sleep issue. I agree Dr. Kishi was both disorganized and did not have all the answers regarding essential deficits. What we do not know is if he is one of us, and also not able to process many of the questions put to him. That said, I believe many of our cognitive impairments are correlated with defective sleep initiation, and the transition issues he presented. This is what makes this disease as ugly as it is. It does not seem to ever be enough “REST” to restore with this disease. Sleep deprivation is more than a deprived life, it is debilitating beyond imagination. With a CPAP after 9 years and with Modafinil, I finally look normal to Dr. Sleep when I have my visits. Unfortunately, she will not, or possibly can not classify my sleep issues as “Central Sleep APNEA”. And even if she could, there is still that blasted impact of PEC over my Breakfast! I think with the severity of thyroid issues that come standard equipment with this disease there are problems with blockages of the airway during sleep, but given all the other CNS deficits there is good cause to consider at least a “Mixed Sleep” deficit.
I agree with you, I am trusting the Specialists on the Panel who know what we are suffering with to bring the Panel Member who know nothing about the disease out of the darkness. The IOM will be successful if they can initiate nationwide proper patient care, and mandated Health Care Providers to attend and become educated through honest to goodness Continuing Educations Credits to be licensed. If it was as easy as one word or one sentence, ME/cfs et al would be as commonplace as Cancers, Lung Diseases and Heart Defects. And, none of us would be sending mystery messages back to the family to interpret. I am surprised he even questioned “record?”! Thanks for all you do to keep this information understandable. I hope you lie low, grab a blanket and re-cover until your rest is sufficient to challenge the next meeting.
Diane, a few things: PANDORA Org had a representative there, our secretary Shannon Cassidy. Also, when we met with Unger in the CDC after she was appointed, we urged her to make ME/CFS a reportable disease. There may still be cluster outbreaks and if these were identified early, better research can be done. Also, it would make doctors have to learn about the disease. Now next is my own personal belief. I cannot see any chance that Ron Davis, whose son has a very severe case, or outspoken Nancy who hears the repeated horror stories of patient experience with other clinicians, or Lily, who is astute and has the disease, or Learner who thinks it’s viral or Rowe who sees the connection to NMH or Bateman whose sister died from surgery complication from lymphoma no doubt caused fro the ME/CFS she had (and who sees the gene expression from exercise) or Keller who sees the aerobic dysfunction will allow something to come put that is worse than what we have now or indicates psychological.
I also believe that if I was in a room of people who actually published research on a disease and saw patients for decades that I would listen with respect to what they have to say. I know there are egos, but you must admit when a Nancy or Rowe or Bateman is there that they know more about the disease than me or the others there.
I totally trust in our Specialty Leaders, and with every meeting I have been able to attend, I have returned with greater respect for all their dedicated work. I am grateful that they also have respect for me when I approach them with a question or comments that they have stopped and taken time to explain to me in a conversation. They do this even when on a tight meeting schedule. If I could, I would not miss any public meeting knowing my dilapidated presence does more than just take up space. I encourage others to try to attend the meetings when they are able. I am waiting for my 18 month relapse to give me a break….and then I will back in action.
I would still advocate for this to be “Reportable” for the sake of all those providers who minimize our misery. The “Mandatory Td Vaccine Booster” took my life, ‘mandatory disease reporting” takes a few hours from the Physicians busy day. But it also sends a message that this disease is critical to get properly diagnosed, tested and treated effectively with all it’s nuances before the first year one becomes afflicted. Maybe if the IOM can resolve this Million Dollar Assignment, they can then figure out how to Clone the Special Team of Dedicated Task Force Practitioners you have named above. I would include Dr Jason with them and many others who have made a career commitment to our misery. I know no one in Maryland who even comes close to these knowledgeable and caring Treating Researchers and Practioners.
I apologize to Dr. Rowe, he is in Maryland! But, of all the Specialists I have been to with Johns Hopkins, only one knew of this disease but could not provide care. She happened to be a Miller School of Medicine Graduate MD, who also was a part of ME Research with Dr. Klimas. She honestly did no harm. All the other Doctors at JH mocked me and my misery and gave improper interventions. I suffered unnecessarily! Dr. Rowe is a very special physician but he can not accept new patients.
I do not believe for a minute that the IOM is actually paying any attention to what patients have said; they were hired by HHS to define ME/CFS as a psychological illness, which requires only treatment with antidepressants, CBT and GET. The purpose of this is to give the government an “out,” an excuse for not having done real biomedical research on this biological illness for the past 30 years, while ignoring the thousands–possibly millions–who are suffering and dying.
And now we have our phony so-called “patient” organizations, CAA and PANDORA, with the assistance of the Whittemores from WPI, telling us this is a good thing!
Ms. Tidmore says:
“I also believe that if I was in a room of people who actually published research on a disease and saw patients for decades that I would listen with respect to what they have to say. I know there are egos, but you must admit when a Nancy or Rowe or Bateman is there that they know more about the disease than me or the others there.”
No, Ms. Tidmore, I do not assert, as you do, that “a Nancy or Rowe or Bateman” know more about the disease than I know. They have studied some illness–or more often, people with idiopathic fatigue–while I have intimate knowledge of the beast. I have been living with this illness, daily–suffering the slings and arrows every single hour of my life–for decades! I care! It appears to me that those you named, “a Nancy or Rowe or Bateman,” may have some limited knowledge of some fatigue illness, I know absolutely and from personal experience just exactly what is this devastating illness from which I suffer. I also know the intimately the damage it can do to peoples’ lives, which “a Nancy or Rowe or Bateman” does not.
One could add to your list Simon Wessely and his friends–and Bill Reeves of the CDC and Steven Strauss of the NIH. They all “studied” what they said was “CFS.” I have no idea whether those patients they examined had anything whatsoever in common with me or with the devastating disease from which I suffer. But I know very well that none of them cared. If they did, they would not have said that ME/CFS is all in my head and that what I need for treatment is antidepredssants, CBT and GET. And if HHS/IOM cared one whit about ME patients, they would not be asserting that the incompetent IOM define the illness; they would leave the definition to real experts–and those experts made their opinions very clearly with an open letter to the HHS Secretary before HHS made this abominable contract. (See: http://www.mecfsforums.com/wiki/Open_Letter_to_Hon._Kathleen_Sebelius_9/23/2013 ) The real experts have already spoken, saying ME should be defined by the CCC. No amount of spin will make this IOM contract right. It is absolutely wrong and will wreak devastation, again, on ME patients.
I am acquainted, to one degree or another, with Drs. Bateman, Klimas and Rowe. I also know patients of each of them. The patients of theirs whom I know personally all have ME. I completely agree with your assessment of Wessley, Reeves and Strauss, but Klimas/Bateman/Rowe do treat ME patients.
I don’t know why people are surprised. The agencies involved had tried to bury this illness 30 years. Did anyone really think, that they were actually helping these agencies by working with them? Im sorry, these agencies did not hear one word, because if they did, they wouldn’t of asked the ridiculous question of “what do you think the name of the illness should be?”
They also wouldn’t of done this IOM thing to begin with, experts sent a letter asking not to.
In all due respect and no disrespect intended, but that basically a gullible thing to do.
As the old saying goes “You cant walk with God in one arm and walk with the devil in the other”
it doesn’t work and it comes back to bite anyone doing it.
The supposed experts have how many patients each? Did any of them show up there?
If their own patients that could’ve made the trip had any faith, they would’ve done so.
There are patients who aren’t as debilitated and could still do things like take a trip.
That says something right there, that is very telling actually.
15 patient/advocates/carers spoke in January, they speak the same language as the people on the panel, so what they said should’ve been understood and its all on video, they could’ve reviewed the replays. Those 15 people who spoke, made it quite clear how the majority of advocates and patients feel about this IOM process and the elementary thing such as what the name of the illness should be, was already known by the supposed experts for years.
The panel obviously were not listening in January, which was expected, which was why people didn’t show up, because if they were listening, they know what the patients want the illness to be called. If they listened, they would know that we all want fatigue thrown out and for the illness to be called what it is, and that is M.E. period, no exceptions, no excuses.
The 4 people patients/caregivers asked to speak should’ve said ME. The only person out of the 4 I will give a pass to was Joseph Landson, he was severely cognitive impaired, he didn’t look like the same person who was there in January. He looked so bad, he looked like he was a dementia patient. The other 3, they should’ve said ME, no excuse. Especially after all of the years of suffering, not just them, but the whole patient community, they couldn’t say ME?
The name shouldn’t of been an issue, the supposed experts have know that for years. They have known the name is an almost 30 year old question. The patients have begged like beggars on their knees for the name to be changed.
As far as the panel, it was obvious that Alegria isn’t paying attention or reading any of the literature. Lenny Jason said “read the study.” Why Alegria didn’t know some of what Lenny Jason was saying as far as controls, as far as im concerned is unacceptable. She is on the Harvard Research team, she should know. She is also a highly sought out public speaker in psych circuit right along with Dr Joseph Biederman for psych conferences, who is a walking money maker for the pharmaceutical companies and a corrupt one I might add, his story is in the NY Times.
Unfortunately, when Landson was trying to tell his story, which he had a difficult time doing, Someone like Alegria was probably wishing she could hold his hand, pat him on the back and tell him that his problem was a somatoform disorder since that is a big thing at Harvard these days.
The sleep doctor, Dr. Kishi, it wasn’t his fault. He is a post doctoral fellow, he isn’t in practice yet, he is still in training, he shouldn’t of been there. He is also very young, he doesn’t have the confidence yet to speak up to a panel of supposed experts, and one of the people he is under the supervision of is Dr Natelson. Dr Natelson set up that sleep testing study that was done. Dr. Natelson set up a one day test, that should’ve been a two day test. Dr. Kishi probably does not know that anything having to do with exercise, as far as testing for ME patients require a 2 day test, Natelson probably did not tell him.
No one should be making Dr. Kishi a patsy. Dr. Kishi actually looked very interested and he may be a future doctor in the field, I did understand what he was saying and he believed that the ME patients have sleep problems after exercise, he said the CPAP didn’t help them as well during the sleep study. And, also, common sense, his heavy Japanese accent made him hard to understand to people including people on that panel, and this was known ahead of time. There should’ve been someone transcribing subtitles of what he was saying on a screen, no excuse for that not to have been done. If you tube does it for almost every video on the you tube website, the IOM could’ve done it for him, they have been paid well!
The problem with some of our supposed experts, for some reason, they keep insisting on saying the word “Fatigue” which has actually hurt us all of these years along with all of the other the problems with these government agencies, CDC/NIH/HHS who have tried to bury us and make us disappear like Stephen Straus said in the letter to Fukuda that can be seen on the CFIDS Report blog/website.
These experts, they all know things like what we all want the name to be. And, they need to stop using that “fatigue” word, its an insult to us now because its not fatigue its severe weakness, that’s why we describe it as the flu that never went away. The flu symptom or viral symptom is severe weakness, not fatigue.
Remember, its not only going to be results of the IOM that are going to be taken into consideration, but also that P2P study. That P2P study is set up so bad, anyone who reads that, common sense says that the results of that will be psychiatric, its a GET and CBT trap.
Non-Medical lay people are also part of that, non-medical lay people have no idea what this illness is. Those non-medical therapies on that review may look good to those non-medical people, and that’s something we do not need, that’s something that brings us not to even the Fukuda definition, but to the Oxford definition that is cited on there, the Wessely school special.
The results from that CDC multi center study that Unger is doing wrong, is going to be part of it too. If Unger were ethical, she would be doing the testing properly. Unger hasn’t heard a word that anyone else has said. She said it herself months ago, that “2 day CPET test was not negotiable,” its a waste of time talking to someone like her when she has her mind made up already. If anyone thinks they are going to change her mind, I have a bridge to sell them in Brooklyn.
Why should anyone trust these people, they have proven to be not trustworthy everytime.
Patients and advocates have basically spoke to the wall for 30 years.
To be quite frank, any medical person, who listened in medical school, would know after reading about any one of those documented ME epidemics, that a polio type virus was the culprit because the only disease prior to this one that presented itself in clusters the way this one does was Polio, starting with a flu like illness or some type of infection.
I myself didn’t go to Harvard’s school of nursing, I went to one of CUNY’s colleges for nursing and we were taught all about polio, that it came in clusters, especially in the late summers, that mothers were scared to death to let their children go to places like the movies or anywhere there was a crowd because all of the people who got polio in that crowd of people, got it at the same time. We were also taught that 90% of people who got Polio didn’t know it was even polio, that only 1-3% suffered paralysis, that most of them didn’t know that flu they got was actually polio until 20 years later when they started suffering from Post Polio Syndrome. We could have patients in our own community who actually may be Post Polio Syndrome patients since “CFS” is one big waste basket.
When I first read the documents to one of those ME epidemics, I knew right away it was a virus from the same family as the polio virus, which is one of the enteroviruses, its no mystery. I actually gasped and thought, how could this have been missed????
Clusters were still going on in NYC in the 90’s in almost every hospital in NYC, I know because I worked there. Dr Susan Levine would ask me everytime I went to her office for an appointment which hospital I was working in again, because she got a slew of patients from this hospital and that hospital. I also knew of other people who worked in many of the other hospitals who were patients too. That is why, there are over 100,000 people in NYC (Manhatten, Brooklyn, Queens, Bronx, Staten Island) today, with this illness.
Almost all of my nurse friends, have this illness, we used to go together to our appointments to Dr Levine’s office. Fortunately for them, they didn’t become as debilitated as I did and did not have to fully stop working altogether.
Remember, Dr. Chia found those enteroviruses, he dug deep because his son was ill, now his son is in post grad school and helping with the research along with Chia’s wife and they have a generous donor to help them do that The interferon study he did proved to be very successful. He himself said that unfortunately the FDA would never approve interferon, thus Oxymatrine AKA Equllibrant.
But notice, Dr. Chia is being ignored by many, he is talked about, but has anyone else replicated his studies? And maybe those ego’s have a lot to do with it. Shame shame on those people with their ego’s. There are millions of human lives we are talking about who are dying now and many of them are choosing the suicide way out. Shame shame again on those egos!
All anyone has to do is look at a post polio website such as this one: http://www.post-polio.org/edu/pabout.html , and take a look at the list of symptoms, who do they sound like?
They sound like us! They have PEM/PENE, they cant exert themselves (notice they don’t call it PEM or PENE), etc.. If they had labwork like we do, their results would probably be the same as ours with the viral tirers, immune system issues, etc..
Why all of this song and dance for 30 years, I have no idea, its actually not malpractice by the CDC, its criminal negligence and fraud.
Quite frankly, the only way this panel will be convinced of anything the patients have to say is if God Himself came here to tell them and even then, some of them still wouldn’t believe!
I for one want to say thank you Jenny for providing input. I highly value your balanced approach towards the issues!
I also want to thank you, Jennie, as always, for your reporting and advocacy!
Thanks for well-balanced review Jennie. I hope that Lennie gets the money he needs to do all that work!
I’m glad Lange got her time to give her take on the unusual nature of cognitive symptoms in ME/CFS – it was important that the panelists got that.
The sum of the whole?
This comes right down to the HHS ramming in its appointed IOM contract to redefine ME/CFS—red flag. 50 international ME/CFS Experts and Researchers responded to this detrimental action to ME/CFS sufferers in a letter to HHS then Secretary Sebelius calling for termination of the IOM contract and adoption of the CCC – as written by all ME/CFS Experts defining ME/CFS.
HHS has totally disregarded the advice of the ME/CFS Experts—the experts of this disease ME/CFS—red flag.
Notably, the IOM committee was set up by HHS and appointed with a majority of NON-ME/CFS experts; this is extraordinary and inappropriate—red flag. This IOM committee format/make-up of NON-ME/CFS experts stands in the face of all logic and reason—and with an influence towards psychobabble—red flag—the IOM contract is a political ruse—with an HHS agenda restricting the ‘evidence’ for the IOM committee to review within a set parameter/framework—red flag.
The ‘evidence-based’ literature review of ME/CFS is based on old, outdated, biased unscientific misinformation focused on a psychological bias—red flag—with recommended treatments of CBT, GET and anti-depressants—red flag.
And let’s not forget the P2P jury model put in place alongside the IOM contract/committee to complete the task for HHS—red flag.
Contrarily, at the same time medical ‘science’ and biological research are exploding and getting ever closer to identifying biomarkers for ME/CFS. HEY–this is what we persons with ME/CFS need!! Yet, the HHS wants none of that; hence, the IOM contract to define ME/CFS ‘their way’—with NON-experts in ME/CFS and a psychobabble bias—red flag.
Red flags at every corner, at every turn; at every step of the way there is yet another roadblock put up by HHS in getting to the biological answers to ME/CFS.
There is a huge problem here, Houston!! HHS, CDC, NIH and agencies—lies and cover-ups—in continuing to bury the disease of ME/CFS and the masses of people plagued with this life-stealing debilitating disease—HHS now using the set-up IOM committee and P2P jury model to complete the HHS predetermined mandate in defining ME/CFS.
How dare you destroy human life like this!! How dare you, HHS?
HHS, CDC, NIH—you are directly responsible for the continuing spread of ME/CFS at home and globally—you are knee-deep in criminal negligence to public health and safety.
You need to do the right thing now and take action to fix this travesty of ME/CFS that you have plagued and cursed us with–and all the while ME/CFS is spreading. The time is NOW! IOM is NOT the answer for patients—the IOM contract is a political ruse set to harm ME/CFS patients further. This harm was also stated in the letter of the 50 ME/CFS Experts and Researchers to HHS Sebelius.
Listen to the ME/CFS Experts and Researchers and adopt the CCC; cancel the IOM contract–put this aside.
This is the sum of the whole as enacted by HHS, CDC, NIH–filtering down through to the IOM committee and P2P.
The name has got to go. It’s just so harmful and trivializing. Ramsay’s disease sounds ok to me.