I assert that for ME/CFS it’s all about changing the conversations or narratives around it that are keeping it poorly funded and mostly ignored. Once those conversations change everything else will change. What was impossible beforehand will suddenly become not just possible but natural.
In this blog we check out what conversations the IOM Report “Beyond Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome: Redefining an Illness” is triggering in major media outlets.
Very quickly we can see two major messages the media is taking from the report are:
- Chronic fatigue syndrome (or SEID) is a real and serious disorder that has been misunderstood and underfunded for years.
- It’s main feature is not fatigue but exertion intolerance: i.e. the inability of patients to exert themselves without getting hammered.
That ME/CFS is not considered a real disease yet may be more than a bit upsetting to those that have it, but consider the possibility that the real reason ME/CFS is not getting the funding it should is because, in the places that matter, it’s embedded in a conversation or narrative that says it’s not a real and serious disease.
The key is to switch the listening at the NIH and CDC’s from something like ME/CFS “is not a real priority” to ME/CFS is a”real and serious disease and is a priority”. Once that message really gets home, it will start being treated like other “real diseases” and get the appropriate funding and support.
Let’s see how this report is contributing to that change of conversation in the media.
National Public Radio
“Panel Says Chronic Fatigue Syndrome Is A Disease, And Renames It”
NPR stated the obvious to us – that ME/CFS is a real disease”, but not apparently everyone else as it lead with “Panel Says Chronic Fatigue Syndrome Is A Disease, And Renames It”. NPR began their article powerfully stating:
“Because there is no specific test for SEID, many people who have it haven’t been diagnosed, and healthcare professionals often have viewed patients as complainers whose symptoms are psychological, not physical.
But a 15-member panel of the Institute of Medicine, an independent government advisory body with a lot of clout, says otherwise. In a report released Tuesday, the panel writes that the condition “is real,” and admonishes clinicians, “It is not appropriate to dismiss these patients by saying ‘I am chronically fatigued, too.’ “
Later Dr. Bateman illuminated how the name was chosen. Every word, she said, was packed with meaning. Systemic refers to the whole body impact that exertion has. Intolerance denoted impairment. Because the word disease had stronger connotations than the word disorder, it was chosen.
WebMD
“U.S.- appointed panel says illness is’legitimate”
WebMD doesn’t have the worst or the best ME/CFS information on the internet, but this very popular medical website had one of the best overviews of the report on the internet. Scoring second on a Google search, it was definitely getting around.
WebMD’s secondary headline “U.S.- appointed panel says illness is’legitimate” emphasized two important facts – the IOM panel was a federal job all the way – with all the heft that implies – and that ME/CFS is a real “disease”.
The article featured Suzanne Vernon of The Solve ME/CFS Initiative (SCMI) stating she believed the report would provide a watershed moment for this disorder:
“I believe we are at a tipping point for people suffering from ME/CFS, where we are going to be able to get people diagnosed, and with that diagnosis comes the ability for us to really lay the groundwork for much more effective treatment for ME/CFS,” Suzanne Vernon
Dr. Clayton emphasized the need for more research and then repeated – this disease is real and serious. The only figment of imagination regarding whether or ME/CFS or SEID exists in the minds of MD’s and medical professionals who pooh-pooh it:
“We expect and hope more research in the future is going to allow the refinement of this diagnosis. This is not a figment of their [patients’] imagination. This is an all-too-common, complex disease that needs to be diagnosed.”
Doctors who continue to dismiss ME/CFS are going to have to have to ignore a report stating otherwise from one of the most prestigious medical research institutions in the world.
WebMD did a good job, but after it featured an ME/CFS patient stating that before chronic fatigue syndrome
“I could run up a flight of stairs and be a little winded but otherwise fine. Now when I do it I feel like I’m on the edge of collapse. You feel like you’ve been hit by a train”, it may want to rethink its page saying that “most people with CFS” feel worse after “strenuous” physical activity. This will be a time of reeducation for many.
Nature
In their news section, Sara Reardon of Nature – one of the most popular science journals in the world – quickly highlighted the key finding of the report – that “the key symptom of the disease (is) the body’s inability to tolerate any exertion”. Every time that finding gets the disease gets redefined in the eyes of the public. Note that Sara said it was the “body’s” inability – not the mind’s inability – but the body’s inability to tolerate exertion that was key.
It was kind of ironic to see Dr. Peter Rowe of all doctors being quoted as saying that the new diagnostic criteria “will in the end get more people cared for and treated,” given he’s been overwhelmed with patients for years. Jarred Younger of the Neuroinflammation, Pain and Fatigue Laboratory at the University of Alabama at Birmingham believes the report will prompt a “drastic” increase in the number of diagnoses made. That’s good news those patients and it’s very good news for the movement as a whole. More people means more support and more effective advocacy.
The report should help with that, though. WebMD, a website focused on doctors and patients, pointed out in its article on the report that between 84-91% of people with ME/CFS are not diagnosed – a fact that underscores the need for federally funded COE’s. The report provides a strong platform for the ME/CFS community to demand more resources, and federally funded Centers of Excellence (COE) would top the request list in that regard.
The recent work from the federal advisory committee on “CFS” (CFSAC) to document the need for COE’s is looking more and more timely all the time.
Medscape
IOM Gives Chronic Fatigue Syndrome a New Name and Definition
In one of the best reports on the web, Dr. Clayton elucidated more reasons for the name in Miriam Tucker’s Medscape piece stating:
“There’s a long history in medicine of symptom-based diagnostic names…. Until the etiology is better known, we wanted to focus on just the central symptoms of the disorder. This is really is the result of the current state of the science”.
The committee agreed that the evidence did link chronic fatigue syndrome to immune dysfunction and infection but it wasn’t strong enough yet to base a name on it. The cardiopulmonary tests impressed Dr. Clayton enough for her to emphatically state that “The level of response is much more than would be seen with deconditioning,” Dr Rowe pointed out the obvious – which apparently needs to be repeated again and again – that deconditioning could not play a role in people who were physically active before they suddenly became ill.
While many in the ME/CFS community have been understandably wary of putting their future in the hands of outsiders, Dr. Rowe found that the non-ME/CFS experts in the committee quickly came to the same conclusions as the ME/CFS experts. That suggests that a key aspect of building allies simply requires finding ways to get people better informed about this illness is Once they are – they get it.
“It was a unanimous committee report…. It was interesting for us who are clinicians in the field to see how obvious the direction of the evidence was for those who are scientists, but not specialists in this area.” Dr. Peter Rowe
Dr. Clayton – the outsider turned advocate – suggested that the science is moving quickly enough that they may have to reassess their findings not in five years but perhaps in two or three.
“We really think this is an area where things are moving relatively quickly. If, as we hope, what this report does is elicit greater interest and a greater recognition from entities that they need to be funding more research, and if in fact the research ramps up in the way we hope that it will, it would be lovely if we knew enough in the next 2 or 3 years that it was time to reexamine this.”
Younger believes the report will have a “long-lasting” effect on the field and that we are finally seeing a “true push to recognize SEID as an important medical entity”.
In a SFGate report “Fatigue syndrome validated by influential group“ Dr. Jose Montoya, the leader of the Chronic Fatigue Initiative at Stanford University asserted that this report has the potential to fundamentally change the narrative surrounding this illness.
“The Institute of Medicine was able to come out and say this is real, it’s chronic and it devastates many lives…For 30 years very few voices were saying that and people were not listening. And now here comes an institute with such visibility and clout, saying those words…..(The report) has the potential to change the narrative of this disease”
Choices
The IOM report will help to break the hold on the inaccurate conversations around ME/CFS that have allowed federal funders and others to essentially ignore it. How big of a change it will make is, of course, unclear.
The Feds have a choice at this point – agree with the reports findings and significantly ramp up research funding and fund Center’s of Excellence – or find a way to dismiss the report, and go on their way as they have in the past.
The Feds are the major emphasis because they control an enormous amount of medical funding, but it’s hard to imagine that this report isn’t also having very positive effects at the research centers at Stanford, Columbia, Nova Southeastern University, the University of Alabama at Birmingham the Univ. of Nevada at Reno that are studying ME/CFS as well.
A rising tide lifts all boats.
Great article and analysis, Cort!
I think we should be happy the panel got so much right and not quibble about what we like (or don’t like) about the new name. This report gives our disease legitimacy that may lead to real progress.
Thanks. Whatever people think about the name, the report is helping greatly. The rubber meets the road at funding, however – will it and the P2P report prompt the NIH and CDC to finally increase funding? We shall see!
Excellent synopsis and analysis of the IOM report regarding ME/CFS, the proposed name change and new diagnostic criteria for SEID.
There will always be those that will dismiss this illness until there is a diagnostic test for it. Yet without funding for research and recognition that it does exist, no matter what name you give it, how do those in doubt of its existence ever expect to find a cause, a genetic marker, or test to be developed? I hope this report will encourage the powers that be to finally fund some realistic and serious research.
Keep up the good work, Cort!
Right on -until there is a diagnostic test for it – it will be open to these problems. Research is the answer!
But how can there be a diagnostic test if the criteria does not even include immune dysfunction, or autonomic dysfunction beyond “orthostatic intolerance,” which is not clearly defined? The main tests we have right now that show up lab numbers are immune, and cardiac. Even the “Post-Exertional Malaise” was significant because it showed a strained immune system 24 hrs later… without immune tests and even an acknowledgement that this is an immune disease (at least in part) what chance do we have to show proof of biological dysfunction? Additionally, they tossed the Myalgic Encephalomyelitis part of it out without ever trying to do widespread testing within the brain and spinal cord of severely ill patients to prove they do NOT have inflammation. Of course we don’t have much proof of this yet – because no one has ever funded any testing of patients, except those few who were confirmed as inflamed by autopsy!
My emotions are all over the place with this change, and I am not sleeping. I am happy in one respect that this happened, but in reading many negative comments online by non-patients, I am very worried that this has set us back even further in the public’s eye. Many people are saying this is “PC nonsense to justify certain people’s jobs” because the name sounds like a PC version of CFS. You know a large portion of this country is anti-science, and anti-scientists – so unfortunately having a panel of doctors behind this means nothing without clear lab numbers of brain images to prove this is real and not just a propping up of some specialists’ jobs. I want to be positive, but the best I can feel right now is very mixed, and very scared. I am worried I will lose even more friends now that this is in the news, that they’ll see it and say “Isn’t that what you said you have? But why are you making such a big deal of your immune system not working and being bedridden a lot if this just says you can’t exercise hard? I think you’re exaggerating for attention!” We’ve all heard this before, sadly, from people we really cared about and needed. I am also really concerned because I have seen a ton of misinformation in nearly every article I have read, and comments are filled with people self-diagnosing and saying “yeah, I had that, I used to coach teenagers for a year after work and it made me really tired afterward when I came home!” Those kinds of self-reporting cases really hurt us, and a lot of people are reading them and thinking they are real cases of what this disease is like.
Not one report mentioned that it feels like you have the flu every single day of your life, like you are dying, with constant swollen lymph glands, headaches, horrific pain, stiffness, tachycardia, etc… I strongly disagree that the main feature is that I get worse when I exert my body. Fine if that means I have a different disease than SEID, but then so do a lot of other people, and we still don’t have a name or diagnosis for us! I have been bedridden for more than 5 years, and I’d like someone to finally get that without me feeling like I have to hide the true name of my diagnosis because loved ones will look it up online and say “That’s not what it means at all! You must be faking because it is way less serious than that, you must be a hypochondriac!”
I hope they do start taking it seriously and funding it, and redefine it soon – like 2 years from now. I will try really hard to hold on that long while doctors and people I know disrespect and misunderstand me on a daily basis, until there is validation. When I could use M.E., it was easier to link to articles that accurately defined what I was going through. But now M.E. searches go back to SEID, which makes it sound far less serious, and not even an immune or autonomic disease at all. So in some ways for the patients, all the publicity makes surviving in the meantime a lot harder. I wish the panel had emphasized all of the things they have found that may in future provide leads, at least. So they could say this is only temporary that we’re defining it by one symptom, but we have seen strong evidence so far that this may end up being immune, heart, endocrine, brain, etc. etc. etc. That would have made me feel a LOT better! Then I could just have pointed to that part of the article and said to people I know – “see, that part is me. The information is coming, we just have to be patient.”
Let’s keep the momentum going forward!
I was resistant to new name but if that’s all it takes to garner real attention and support –ok. Sincerely, Hipjaven@gmail.com
It’s good that the new name takes out the word FATIGUE, but it doesn’t address cognitive dysfunction, which is one of the two hallmarks of the disease.
It’s good the disease is in the media, but I wonder how long until the patients get dissatisfied with the new name SEID.
Quote from the IOM Report:
p. ll “After extensive consideration and mindful of the concerns expressed by patients and their advocates, the Committee recommends that the illness described in this report be called ‘systemic exertion intolerance disease’ (SEID). ‘Systemic exertion intolerance disease’ captures the fact that exertion of any sort (physical, cognitive, emotional) can adversely affect these patients in many organ systems and in many areas of their lives. The committee intends for this name to convey the complexity and severity of this illness.”
Quote from Dr. Melvin Ramsay, the Consultant in Infectious Diseases at the Royal Free Hospital concerning patients who became ill in 1955 (an outbreak labelled, in a 1970 paper by McEvedy and Beard, psychiatrists who based their conclusions on inspection some of Ramsay’s notes, as ‘mass hysteria’):
“The degree of physical incapacity varies greatly, but the dominant clinical feature of profound fatigue is directly related to the length of time the patient persists in physical effort after its onset; put in another way, those patients who are given a period of enforced rest from the onset have the best prognosis.”
And: “…in those patients whose dynamic or conscientious temperament urge them to continue effort despite profound malaise or in those who, on the false assumption of ‘neurosis’, have been exhorted to ‘snap out of it’ and ‘ take plenty of exercise’ the condition finally results in a state of constant exhaustion.”
And: “Those whose circumstances make adequate rest periods impossible are at a distinct disadvantage….”
So…..finally, have Beard and McEvedy and their influence been overthrown (for B and M, read ‘Wessely and White’)? In Ramsay’s day, many patients who were hospitalised from the inception of their illness recovered. These days of enforced CBT and GET, patients get worse. Is it too much to hope for, that the IOM report’s assertion…that exertion does make us worse, does do us harm….is finally going to result in rest becoming the treatment of choice?
I have been extremely pessimistic about this report, but if these statements are taken seriously, acted upon, and the false illness beliefs of the psychiatrists finally rubbished, it will be a good day for us. So far it’s a definition…let’s see what happens when treatments are proposed…..
Cort, I think my comments, which I have posted in a few places, will not be popular…people are very negative about the new name. But I think that they are saying unequivocally that exertion does harm…what lots of us know…it isn’t just post-exertional ‘fatigue’, but an actual worsening of all the symptoms, and sometimes it is a permanent worsening. The psychiatric position is based on their insistence that we need to be talked out of thinking that exertion does us harms – IOM are saying that it does. Hope this seriously undermines the whole psychiatric thing, it should. I have been writing absolutely everywhere about complete rest as a treatment, followed by a lifestyle organised around the conservation of exertion….so I feel vindicated. Also a lot of the critics of this report haven’t seen the reports insistence that SEID be given its own category in ICD 10, not lumped with either CFS or neuresthenia…so again it seems they are taking an anti-psychiatry stance. Wessely is reported to be happy about the criteria – I don’t know why he should be…worrying if he is. The crux will be if the recognition of harm done by exertion with take them in the direction of therefore valuing rest and exertion conservation as the first line of treatment…or they somehow use it to justify GET. Don’t see how they can say that exertion does actual harm and then justify it as a treatment. Watching this space, cautiously. BTW did you get copies of my Beginner’s Guide? (It recommends rest!)
It’s eerie how on the ball Ramsey was.
“Hope this seriously undermines the whole psychiatric thing” – I don’t see how it cannot….
“The crux will be if the recognition of harm done by exertion with take them in the direction of therefore valuing rest and exertion conservation as the first line of treatment” – I agree…..
Got the copies – thanks 🙂
Thank you, Nancy! Wish I had this information when I became ill 21 years ago! Though I have realized the vital need for rest….this realization came way too late in the game for me. But it is never too late to do what is best for us. I just downloaded your book…so glad to find it on kindle! We can never have enough reinforcement regarding our need to rest, especially on our better days! Thanks so much!
Christine
(my on-line “name” is “RestingInHim”
ditto, Javen
I would be curious what the media response has been for those poor folks in the UK, they seem to have it worse than we do when it comes to the medical establishment. Hopefully this report will change some minds over there too.
Me too! What is going on over there I wonder?
I am in the UK and I have heard nothing! I only know about it from your site and through an email from the Open Medicine Foundation. I posted a link to your blog on Facebook and only one friend has commented and another person has liked it. (Both of these are in Australia.) I have friends on Facebook from my local ME Society and none has shown any interest. I just did a google search for the name SEID and came up with a new Wikipedia link and an American science news report.
I am a member of Action for ME and have searched their Facebook page and found a link to their forum. The reporting is very brief and they are asking members to get in touch with their thoughts. They will produce a response in due course.
I am so glad for this site, to keep me informed. Thank you Cort.
Here’s my own take on this report.
http://paradigmchange.me/wp/iom/
“Because there is no specific test for SEID, many people who have it haven’t been diagnosed”
I keep reading in these articles that there are no tests or treatments, but shouldn’t it read there is no single test or treatment but there are a series of tests that will show a patten pointing to a likely diagnosis? Also certain steps should be made to not make the patient worse and that various treatment can help improve some symptoms although each patient is unique.
Off the top of my head for tests
2 day exercise test low vo2 max
Immune panel NK cell function
Tilt table test or even a poor man’s lay down then stand up to see if BP lowers when it should rise,
Test for various virus activation
MRI some show spots, or more recent brain scan abnormalities
Lumbar puncture can show inflamation, and various other problems
Low cortisol
I know there are more but I keep reading in various comment sections ( from Medscape to reddit) that there is no evidence of real disease, it’s a made up thing with new branding and that the new criteria given sounds like it could be for any lazy person looking for disability.
Most people and doctors wont read the whole report just the name, which I am already seeing jokes about, and criteria. We know what exertion intolerance means but to most it seems trivial.
The OMI has a PR team and it’s doing a good job of selling their work ( Many patients are not happy with the name and criteria but only a couple articles made that point) but I don’t think they are getting across the seriousness of the disease by excluding so many of the symptoms. Between the new name and lower standards for diagnosis compared to the CCC I think it’s making it worse in some important ways.
Sorry to be such a downer when there are good things to be said but after my unscientific glance around the internet and peoples responses it left me a bit sad and frustrated.
I agree that people, including a lot of the patients with ME/CFS are not actually reading the report and are just reading the press reports and headlines and jumping to conclusions. They are missing all the good stuff in the actual report. There is so much negativity going around at the moment and a lot of misinformation, that is then leading to a lot of anger within the ME/CFS community.
Without seeming to be rude, I want to keep saying to everyone, please READ THE ACTUAL REPORT. Oops, did I just say that out loud? 🙂
Thanks Cort again for an excellent analysis.
THANK YOU, Jamie! This is exactly the point! It’s like this report was written 20 years ago, when such tests were not known about. Maybe there isn’t one test or definitive biomarker yet, but boy, there are a lot of tests with very real numbers showing dysfunction, that are not common for people with other diseases!
Claire, I’d like to agree with you, but come on – we are a significantly disabled, and in many cases completely disabled, community, with rampant cognitive dysfunction, headaches, exhaustion, and eye pain/difficulty focusing. What are the chances that most of us can read (and understand) a 200-page professional medical report? And what are the chances anyone BUT those in the patient community care enough to read it? Most people don’t even care enough to read one entire summary article on a pseudo-news website – they pretty much read the title and the first paragraph and then skip to the endless uninformed comments. That’s just the reality. If everybody in the country read full medical reports, we in this patient community wouldn’t be in the position we are, right? 🙂
Best wishes for all of us to be able to keep up with this drama, and survive on an even keel… If thinking really hard makes me sick, you can see why I am getting incredibly sick this week (as are probably a ton of us in the ME/CFS/SEID/CFIDS/etc.etc. community) – it is hard NOT to think really hard for many hours at a time when you see constant misinformation and misunderstanding on every article or news clip you see about this report. I am really trying to be patient, and I know we all have to be. In the end, this has got to lead to good changes and better understanding… I just don’t know how many years or decades it will take after this. I tend to prefer total ignorance to people being half-informed and feeling very cocky about their “knowledge.” It was terrible to have to be my own doctor and my own expert all this time, but it is worse to try to convince people who just read an article in the newspaper about it that THEY are not now the expert!
The problem is that for each for those areas the level of evidence just isn’t sufficient to base a name on it. Studies of virus activation, NK cell dysfunction, orthostatic intolerance, exercise capacity – they all tend to be small studies. Often there are conflicting results.
None of them have a sufficient evidence base to base a name on it. Don’t you think Nancy Klimas – who basically started NK dysfunction in ME/CFS – wouldn’t love to have that in the name if she could? Absolutely she would but she recognizes the evidence – at the level of rigor needed in this case – just isn’t there.
We just don’t those sets of large positive studies with consistent results that are needed.
Thanks for your reply Cort. Yes, I see the problem with using these things in the name or even criteria.
I just get frustrated reading how there are no test for the disease when the experts have been using a series of tests for many years, even though they might not have the big studies behind them. You use what you’ve got to do the best you can. Sort of old fashion doctoring of seeing a pattern. You may not have proof but it’s better than guessing based on patient description of their fatigue.
My main point being that in these articles and in the material that may be sent out to primary care physicians I would hope that they get the information of what tests may help point them to a good diagnosis even if it’s not perfect.
They could even talk about promising pilot studies, because saying there is no evidence of anything seems so wrong when most of us have tested abnormal for many things.
The experts all test for these things to help them make the diagnosis and assess treatment options even if the research isn’t gold standard yet it’s very useful information to get out there.
Thanks for all the work you do, I’m being contrarian but I really appreciate your articles and viewpoint. It’s very helpful and important.
I am so excited to hear this great news! It’s been so long in coming and I am so happy to hear that my brothers and sisters (I have Fibromyalgia) in this horrible nightmare of misunderstood diseases finally are getting the legitimacy and recognition that should have happened years ago. Science moves slow, but now that ME has received this recognition things will start happening really fast.
I do live the concept of exertion intolerance. I share that with you in addition to the pain of Fibromyalgia. I’m dead on my feet after an hour or so trying to do the simplest of house work, shopping what ever I’m trying to get done.
I hope this opens the minds of people in diagnosing so many illness that have gone undiagnosed. And I’d be lying if I didn’t say I hope this helps to grow awareness around Fibromyalgia as well. I feel you’d be hard pressed to find a doctor who doesn’t acknowledge Fibromyalgia, the issue is what to do about it. As is the issue with ME.
Congratulations to us all and thank you so much Cort for all of your hard work.
Best,
Lorraine
Lorraine, we’re with you! I have heard some 50% of diagnosed patients in the US have a co-morbid diagnosis of Fibro (as do I), so I would certainly think this can only help bring awareness to Fibro patients too. And in researching causes and treatments for either population, we certainly might stumble on answers for the other population.
For instance, despite what this new name and Dx criteria would make one think, M.E. patients actually have a lot in common also with Lymphoma patients (and certainly we have a far higher incidence of non-Hodgkins Lymphoma among our patient population, as well as in our family histories). And so, in treating Lymphoma patients, they stumbled across the Ritiximab-as-potential-M.E.-cure study, when patients had both Lymphoma and M.E. simultaneously and found the cancer drug seemed to cure them of the M.E.! So more research in related conditions can only be a good thing – which I think for us is also true for MS, Lyme, AIDS, and to some extent Parkinsons and Alzheimer’s… every time any one of us gets more funding, awareness, or treatment options, it helps all of us! I really wish some of these articles had mentioned the larger Rituximab study, not because it’s definite of course, but because it shows the immune-linked severity and the biological basis a bit more clearly for non-doctor article readers.
Hi Cort: You provide a high quality service to our community. Many in SLC read your publication regularly.
Our education committee would like to bring you to SLC to speak. Any interest?
Cort,
I read a another report that had in parentheses after systemic overexertion….both cognitive and physical…and that adds dimension to the name to me since cognitive wipes me out, too. I hope there’s some way that the cognitive impairment can be emphasized and not just the physical alone. It’s important that more and more prestigious committees and doctors are saying’this is real’.
Pris
Thanks for the great article, Cort. I haven’t read much of the report yet but it sounds good.
Best,
Janelle
I woke this morning wondering if I needed to go to ER, I had gone to a doc yesterday and so I am more sick today BECAUSE I went to the doctor. What good is this sudden ‘validation’ that I am sick and suffering? I have suffered for 30 years with this. I know I am sick. I know I suffer. I want to know about cause, treatment, cure. I don’t have much time left. I am old. I have lost my career, my spouse, my family and live supine in a dark room most of the time…suffering. Woohoo…The IOM thinks this is real??
I relate, Nina. I really hope you are more stable now, and did not have to go to the hospital. I hope you’re feeling even a little safer today. I know how terrifying and traumatic that feeling is.
I think so many of us feel this way, that it is so “too little, too late.” But, we need to try to be open to the idea that it is “better late than never.” We certainly don’t want whole new generations of people to suffer the agony that current patients have suffered. Progress is soooo excruciatingly slow, and we have been mistreated on a criminal level. But this has been true of many patient communities before and at the same time as us – people with mental illnesses, AIDS, MS, etc. etc. etc. Our medical community pretty much sucks, especially with respect to chronic illnesses, but we have to continue to take care of ourselves and stay calm and balanced, because they can only learn from us and right the wrongs of history if we are here!
This report is I think simultaneously devastating, and a relief, for many of us. It’s hard to feel all one way or the other about it. But we have to, for our own healths’ sake, focus on the positive side – which is that with increased interest and acknowledgement will come increased Dx, funding, and new doctors and researchers to the field. And with all of those things come better times for future patients, and who knows – maybe even an approved treatment or even cure in our lifetime! This report did not make that day farther off, if anything it certainly has the possibility of bringing it closer. I hope that day comes soon to ease your suffering, as well as mine.
Two ways you’ve been such a good leader, Cort, are in providing timely information AND in staying positive. We need both to stay positive and to study the IOM report to best place ourselves for the next moves in this game.
Thanks Cecilia. I see lots of possibilities and that in itself is energizing. 🙂
Cort, as always thank you for all your hard work!!
I’ve been far too sick the last few months to read through long reports but I thought this might be interesting regarding icd codes presented in the IOM report and differences between ME and SEID.
http://twenty-years-and-counting.blogspot.nl/2015/02/guest-post-ioms-seid-and-who.html?spref=fb
Kira
‘More people being cared for and treated’?
I have NEVER felt cared for OR treated, not in 25 years. Mostly they wanted to ignore me or have me go away.
Why would I want MORE people to get the same crap?
They need to fix it, not identify people they have NOTHING to offer to.
Do I sound angry enough? I have to go lie down – I can’t afford adrenaline.
Totally true. We can only laugh – if at first it is a bitter laugh, hopefully it becomes a genuine laugh over time. But it is the chicken before the egg – if we ever want to get better doctor treatment, we do need someone to admit first this is a serious disease (even if they get the criteria totally wrong), and to diagnose more people with what they believe to be even somewhat reliable results. I am doubtful because I think I’m going to get lumped with yet more people who are tired and do not have any immune symptoms whatsoever… but there has to be change to be progress. In the short term, maybe this is frustrating, but in the long-term, we have to slow that adrenaline down and remind ourselves that this change gives us the best chance that treatment and options will greatly improve. LAst week, we could not even get the medical establishment to admit that this was real! Step by step, if slowly, we walk forward. And forward, or even sideways occasionally, is still better than backwards.
To survive this disease, we have all had to learn to find gratitude for even the smallest of moments. Yay, I walked today. Yay, I didn’t go to the hospital today. Yay, I could talk to a friend for a full hour today. We have to be able to do the same with any news about our disease in the medical community – Yay they acknowledged us today. Yay they funded a new study today. Yay a young doctor heard about us today and will join the field as a researcher for our cause and eventual cure. Yay, a new possible treatment was identified. Small steps, but big gratitude. It is the only way to survive. And I am actually grateful for this disease, because it made me so much more grateful for my life and for the person I am than I ever could have been without it. Sure, I also hate it, but just like every other part of this disease, there is a good side and a bad side, and if we can’t see the good side, it only hurts ourselves and no one else. We must keep fighting to see what’s good, and breathing deeply, if only to lower the stress hormones and have a decent day. Anger isn’t bad, but it can’t be our only friend. We need diversity of thoughts, feelings, and experiences to be able to keep moving forward.
Yeah, I agree that there was a different tone in the media this time and whatever opinions one has on the name SEID (which I’m still unsure what I think myself), one thing that does seem possible is that a next obvious question would be ‘well what evidence is there that a systemic exertion intolerance’ exists in SEID patients, then you could point to the growing number of papers that document exercise intolerance, ie the growing # of PEM papers! Very good to focus attention on the hallmark symptom, IMO. If you ain’t got PEM, you ain’t got SEID.
I wonder why the only two names I recognize from all of this is Dr Younger and Dr Montoya. Where are all of our celeb docs? De meirleir, Kilmas, Chia, Cheney and all the others? (It may sound ironic but it is a real question) i’ve always hard mixed feelings about them. Aren’t they well thought enough in the medical comunity as they are with us patients?
the celeb docs??? Best I bite my tongue….
Please don’t
Let your tongue loose hehe
Please don’t
Let your tongue loose hehe
Aren’t they celebs in the me/cfs comunity? Perhaos not in the SEID comunity? Lol
This should help to get Ampligen approved. Maybe.
When Barrack Obama won the election back in 2008, one of his first responses to media was that it was “time to get to work”. No celebration. No Honeymoon, etc. The situation with ME/CFS commands the same behavior from the powers that be. F*ck any celebration, or what-have-you. Although this report is definitely a win, all of us are still in a “tortured” situation that’s essentially never-ending. It’s insane, and that goes without saying. Great! Let’s “get to work”!!!
I noticed that the following article on recent developments re CFIDS/ME/SEID is paired with an article link to ’10 of The Best Yoga Poses for Sleep’. lol
http://www.huffingtonpost.com/2015/02/12/chronic-fatigue-new-name_n_6671122.html?ncid=fcbklnkushpmg00000030
“CFIDS/ME/SEID”
for f$$%’s sake, that just shows the problem with this “SEID” bull….Even if it was adopted people would still need to refer to CFS/CFIDS/ME…as well as “SEID”…for years until people were familiar with it
sorry but this is absolute bullshit Cort…an absolute joke
Thank you, Cort, for your very good analyses of the IOM report and the media responses.
I happen to think that this report is the most positive thing to come along for the patient community in decades. The report has some very powerful statements in it, and it can be used to push the HHS departments to stop treating this disease as if it only affected a few people. We must now focus on the CDC, the FDA, the NIH (FUNDING!!!!) to do what they need to do to help patients get treatments, get more research funded, get Centers for Excellence created, get the CDC’s Toolkit fundamentally changed, etc. As one who opposed the IOM doing this study, I am delighted that the panel proved themselves to be unbiased and willing to write such a report. This is not a wishy-washy, CYA report. It is strong. It will give us clout with HHS we have never had before, and it will give us stature and legitimacy when dealing with medical professionals. The fact sheet for doctors which will be coming along soon should be a boon to patients, as obviously very few doctors would read the whole report.
For those who are too sick to read this report, Cort, maybe you could select some of the best quotes that patients can copy and use with their doctors. ??
As for the name, we’ll get used to it. It is accurate (not exercise intolerance – exertion intolerance, btw). What, after all, is Chronic Obstructive Pulmonary Disease? Try defining that. Or ALS! What’s important is that S-E-I-D is accurate and gives us a firm stance from which to say, ” ‘Chronic fatigue syndrome’ was a name that was never real. I have a real disease – PAY ATTENTION.”
I do implore everyone to stop using the term “chronic fatigue syndrome.” Dreadful, hateful name.
I am verry pleased with the IOM report but i think nothing will be changed for us. The new name isn’t going to help either. Only real objective prove like markers will change the opinion of the general scientists. This disease is to difficult and vague for doctors. This disease is hiding itself verry good nothing can be showed on the outside. You can’t see anything.
This morning KOAT news did a story on this: “Tiredness may be a disease” and it was horrific and condescending. After complaints they’ve pulled it. As usual, we’re still not taken seriously.
Though they pulled it I was still able to view it from a fellow patient’s FB page, so if you know someone who has it on FB, you may be able to view it, but fair warning, it’ll make you furious.
I HOPE that this new name isn’t set in stone.
I agree with Dr. Charles Shepherd’s view:
http://www.meassociation.org.uk/2015/02/name-change-committee-report-comments-by-dr-charles-shepherd-medical-adviser-me-association-11-february-2015/
It appears that the experience of “sea sick” or “motion sickness” is the most accurate way of describing the “malaise” part. The reason for this analogy is because we all once in our lives have experienced motion sickness at least once. Except it is persistent with us, amongt other highly abnormal conditions
Thanks, Cort, for all this work. About the IOM report: After so many years it is unacceptable that: 1. This pathology gets named, once more, after one symptom and 2. all the biomarkers developed over the years are totally ignored. WHy? What is the political and economic reality that produces this type of report? A reality in which the insurance companies have the control of health care. From here, from Europe, where we mostly have universal single-payer health care, this report is not aceptable. Of course, I understand the complicated dance the authors have to dance to put out something that will be acceptable to all the players. But it does not reflect more than 30 years of research nor the reality of all illnesses. WE ONLY WANT WHAT OTHER PEOPLE WHO ARE ILL HAVE!
Many people go to the idea that because biomarkers are part of this that it must insurance companies or some sort of conspiracy or something like that – which is understandable, particularly the way I report the news. I report the news like a finding is a done deal but I’m finding more and more that it’s not.
I think the AHRQ draft revealed what’s going on here. We just don’t have the science necessary; yes, we may have studies but we have small studies and we have studies that don’t include the statistical analyses or include the other disease groups that are needed to validate biomarkers to the standards needed.
It’s because we don’t have what other illnesses have; ie we don’t have the extensive evidence base full of large, well done studies – that we don’t have “validated” biomarkers – and that’s why the committee couldn’t go further than they did.
Hopefully this report and the P2P report will help us get there.
When I hear Francis Collins and Anthony Fauci endorse a 50 million dollar research initiative within a year I will believe the IOM report was a major sea-change. If not, with its mixed bad of good and bad stuff (that awful “new name”) it will have been another time and money waster. The tragic fact is that key people at the NIH and HHS have intentionally blocked taking this disease (which I will still call M.E.) seriously, blocked funding (I was told this twenty years ago by two different HIV researchers), and allowed our lives to remain hell. Is the IOM powerful enough to change this? Who exactly is going to make these people at HHS and NIH change their ways? The IOM made its report. Its work is done.
You’re asking for a lot Michael.
Obviously we have yet to see the effects of the P2P and the IOM reports but ME/CFS is getting about $5 million a year from the NIH right now. Its been that way for 15 years at least.
Anything that moves that figure up significantly is going to be a major advance. Anything that gets out of the doldrums we’ve been in is going to be big. So if research was doubled or quadrupled – to $20 million/year – that would be a huge step forward given where we’ve been at for so long. The creation of some Centers of Excellence would be a huge step forward. We’ve been asking for them for decades.
Either of those, while neither are adequate would be a major sea change in my opinion.
Cort, On that comment I just made can you lose the image? I don’t know why it appears.
I wish I could be as optimistic as you are about the report. But I’m results oriented and when I see results I’ll be retroactively optimistic. 🙂
michael
Well we haven’t seen any results yet and that’s where the rubber meets the road. Will the P2P and IOM reports just end up being reports or will they get the NIH to actually do something? That’s the big question.
I have no idea. What I do believe is that they give us a solid foundation to push for those results.
Excellent summary, as always, Cort! You did a great job pulling this together. In fact, I just finished my own blog post summarizing the news coverage and also opinions of experts & patients, and I linked back here:
http://livewithcfs.blogspot.com/2015/02/opinions-editorials-on-new-name-criteria.html
Thanks for all your hard work!
Sue