The New York Times is the most influential paper in the English speaking world. It gets hundreds of op ed applications a day, and it just chose to publish a powerful, powerful editorial on chronic fatigue syndrome.
Coming on the tails of the Institute of Medicine report Julie Rehmeyer, a journalist with ME/CFS, hit’s all the right notes in her piece aptly titled “A Disease Doctors Refuse to See” (literally and metaphorically).
Julie asks whether the IOM report will result in doctors and the NIH taking this disease seriously or will they chose to continue not to “see” it? Will they ignore the widespread distress out there and continue doing nothing about it?
Can the feds keep sticking their heads in the sand?
It’s a great question for the officials at the NIH – who will be immediately aware of the editorial – to grapple with. They have a lot to grapple with right now. The Pathways to Prevention (P2P) and IOM reports were federally funded. Produced by prestigious organizations (IOM and NIH) – not wild-eyed advocates, they were created to produce…pathways to preventing this illness. The P2P’s authors, in particular, (a group of individuals with no associations with ME/CFS), laid out a roadmap that asserts major changes are needed at the NIH.
Whether we will see those changes and what can we do to promote them is the big question we as a community will be facing in the aftermath of the IOM and P2P reports (uncompleted).
It’s not going to be easy. Julie pointed out some of the callous and even juvenile comments some doctors left in response to the recent positive Medscape article. The same smirky comments have no doubt floated through some circles at the NIH.
If significant progress is going be made NIH officials are going to have reexamine assumptions. Assumptions like these diagnoses are diagnoses of convenience (wastebasket diagnoses), that people chose them to get out of working, that these are second-order disorders not worthy of significant funding.
“Federal agencies will have to start making an investment in this disease that’s proportional to the devastation it causes.” Julie Rehmeyer
They’re going to have accept that these diseases cause real ‘devastation”. Milquetoast, second-order disorders do not cause “devastation”. Sore throats do not stop people from working. Allergic rhinitis does not cause people to lose their careers – to end up bedridden.
Striking a
“blow for freedom”
There is an immense amount of suffering in ME/CFS and FM but I believe suffering must be present in the NIH as well. I think some people there know this disease is real. That it causes profound suffering; that they as an organization have a lot to answer for.
Knowing ME/CFS is real and doing nothing about it – that is suffering as well. Burying an illness like ME/CFS and knowing you’re burying it – that is painful.
It takes a lot of courage, however, to take a stand that ME/CFS is real and serious in an environment that’s been belittling it for decades. To take a stand that we are as a organization have to change. That we can’t go on this takes enormous courage.
We have to help them out. The IOM and P2P reports and Julie’s piece are giving them room to speak out and we have to keep creating that room. We have to keep creating the “space” they need to come forward – to advocate for change – to be our partners. Every piece like this, every positive action we take is a blow for freedom for us – and for them.
- Check out Julie’s op ed piece here.
And also today, an article by a patient with myalgic encephalomyelitis (rather than “chronic fatigue syndrome”) in the Washington Post.
http://www.washingtonpost.com/news/to-your-health/wp/2015/02/25/new-chronic-fatigue-syndrome-report-doesnt-help-us/
The extra symptoms were left out because further studies indicated they weren’t necessary and because they could have lead to higher than normal rates of ME/CFS patients with psychiatric diagnoses being focused on in studies.
The psychiatric disorders were included because high enough rates of psychiatric disorders such as anxiety and depression are present in ME/CFS that you’d have to exclude an unacceptably high of patients (perhaps 25-50%).
Since inflammation appears to account for about 30% of depressed patients it’s very possible that high rates of inflammation induced depression are present in ME/CFS (and FM). That could be an important subset of patients that you wouldn’t want to exclude from research studies and clinical trials.
It’s important to note that including patients with anxiety and depression and ME/CFS in ME/CFS research isn’t new. People with anxiety and depression have NEVER been a priori excluded from research studies. Sometimes researchers choose to exclude them and sometimes they don’t. The Fukuda definition excludes extreme mental disorders like schizophrenia from it but not anxiety and depression.
The article also downplayed the fact that many ME/CFS experts were included in the committee and other reviewed. I think Klimas, Bateman, Chu, Lerner, Natelson, Davis plus Peterson and others know what they’re talking about when they’re talking about exclusionary and other aspects of the report.
Excellent points, Cort!
The depression caused by the general “malaise” that ME/CFS causes creates a major stumbling block for anyone trying to work through ME.
Doctors immediately write it off as “Depression”, when we all know what caused the depression. One must provide irrefutable evidence above and beyond the criteria set by the Social Security Administration in order for the illness to be considered “real”. The onset of “depression” is immediate upon gazing on what was once a full wallet.
ME doesn’t cause depression. I have ME, and I’m not clinically depressed at all. Being sick makes people unhappy; this is more than obvious. Facing a future in which you will always be sick, and there isn’t even an approved treatment available, much less a cure – that’s depressing.
But this is normal, everyday depression, not clinical depression.
If someone with ME has depression, it should be regarded and treated separately. It’s entirely possible for someone to have both diseases – depression isn’t exactly uncommon.
Malaise may make a person sick enough that they seem depressed to other people, but that doesn’t mean they actually have a mood disorder.
Everyone needs to stop conflating this illness with psychological disorders.
Donna, It is hard to tell from two paragraphs, whether Gary is suffering from depression or ME/CFS, but the inflammatory response of ME/CFS can definitely cause what is referred to as depression. When the immune system is activated pro-inflammatory cytokines act on the brain and cause sickness behaviour (malaise). What doctors sometimes define as depression, may very well be, an activated immune system (ME/CFS).
Depression is the opposite of ME/CFS. People with depression are down-regulated, unmotivated and have a poor immune response. While in ME/CFS, a hyper-immune response is what makes sufferers feel so very unwell.
Dantzer on “The Neuroimmune Basis of Fatigue” – and Chronic Fatigue Syndrome
http://www.cortjohnson.org/blog/2014/11/17/neuroimmune-basis-fatigue-anne-faulkner-lecture/
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2919277/
As Cort pointed out, depression is common enough that some patients with ME may also have (or had, pre-illness), clinically significant anxiety and depression.
I have severe ME and along with it came depression and anxiety of a severity I had never experienced pre-illness. This depression and anxiety was NOT related to the obvious depression and anxiety that comes along with having a chronic illness.
Unfortunately, it took me years to get a proper diagnosis (2-day exercise test, etc.) because MDs presumed it was depression.
Yes, indeed – no studies suggest ME/CFS patients have higher rates of depression prior to becoming ill; it’s a part of the disease.
Interestingly, researchers often examine the effects of depression on their findings and I can’t remember a single study in which depression made a difference one way or the other – except for Natelson’s findings…
Donna, you hit the head of the nail. My wife had M.E. for 20 years and killed herself on Feb 22nd. I was diagnosed in 2012 but onset was probably 2009. How can you NOT be depressed by the constant mistreatment by physicians and yes, even family. My wife lost hope when Herpes Simplex disseminated throughout her body ending up in her head. It caused what we referred to as “brain episodes “, like mini strokes. How depressing
I agree with you, Cort. We should all be asking how we can partner with the IOM sponsoring agencies to bring about the changes we all want and need. Fighting them on points of disagreement wastes our grand new opportunities. If I worked for the NIH or CDC I would want no part of working on ME/CFS as it comes along with fierce, combative adversaries in the patient population.
Let’s move forward, work together to make the positive changes we have the opportunity to make, and push for more later, after securing what is on the table now.
Well said, DK! I completely agree!
I agree that we need to go forward with something. We need a diagnosis code that comes with financial backing by Medicare and mainstream insurance. No doctor will want to spend more than 15 minutes with me unless they will get paid to do more
I’m really glad to see this op-Ed in the NYT, and I was onboard until she through an a random comment about how avoiding mold helped her. Comments like this really don’t help, it’s a bit of a red herring. If CFS/ME/SEID were as easy to solve as “avoid mold” it would be a non-issue. I guarantee you there are more patients for whom mold is not the answer than those for whom it is. un fact, if mold is really this patients number one trigger, not only is she not a good spokesperson but she may not even have CFS. Toxic mold poisoning is a condition all its own. (not that I’m judging her experience, my point is that throwing in that random aside did more harm than good).
Dr. Nancy Klimas on the topic of mold, in an interview with Lori Kroger earlier this week.
https://www.youtube.com/watch?v=ldu843XAAHw&feature=youtu.be
*
Dr. Nancy Klimas:
Mold’s certainly an important issue.
The reason that we were attracted to environmental medicine is because there’s two big areas in environmental medicine that rang true to chronic fatigue syndrome particularly, even more so than Gulf War.
One was the mold toxins, the mycotoxin story, which is rarely worked up. We see tremendous damage to the immune system in chronic fatigue syndrome patients, and yet there’s very little work on whether mycotoxins might have played a role. And there are treatments available for mycotoxin exposure.
So we thought this deserved a much more thorough, evidence-based approach. Which is what we offer.
Here we are, an academic center, set up, that’s what we’re going to do.
Here’s a field that has a lot of well-meaning doctors working from their experience, their art, and some really good science. But they don’t necessarily have – they have even less funding, if you can believe it, than chronic fatigue syndrome.
So the state of the science for their work is either too small numbers of subjects in their studies, or they’re not placebo or controlled studies. They’re either case series or they’re really little studies. So they just need some really good science going on to help them.
So this mycotoxin thing is really cool work that’s got some good science started up. It’s certainly encouraging. We’ve all heard stories of patients who discovered after the fact that they were being poisoned by the homes they lived in or the exposures they had to mold at some point.
These are not just any molds, but molds that are known to put into the air toxins that hurt the immune system. And it can be very difficult to know whether they’re in your house or not. You actually have to do some studies to figure it out.
That’s kind of cool. It’s a good area where we can really help people.
And yet again, although it will not be allowed! I agree with the author of the IOM report as Julie Rehmeyer stated, the only thing that’s going to get us money is to get some activism as the AIDS movement did- even just pesky lobbyists to bug the House/Senate for more money.
🙂
Jeez……not encouraging is it?
My primary doctor today told me that FM is only depression, that the chronic pain we complain about exists because we think about the pain all the time (back to “it’s all in your head”). His example was that if you stub your toe it only hurts until you start to think of something else. The doctor I visited before this profound thinking doctor said, “oh yeah we are all tired and we are all in pain, the “2115 disease”” and with a roll of her eyes and a wave of her hand I was dismissed.
I can not beat this illness but damned if I will be pushed aside and be quiet. My life is just as important as anyone else’s life and I’m going to find a way to take a stand and I will soldier on to find a doctor who embraces the opportunity to learn and to care about his/her patient!
Hi Judi,
Wow!! This doctor is so unprofessional !!! Get a new one for starters.
I have had ME/CFS for since 1979. I disagree with Dr. depression comes and goes but the pain does not. Taking St. John’s Wort by Solaray 900mg. a day.
I do better with natural products. Sometimes I have had to double the dose with side effects.
I would also write her a letter letting her know how unprofessional she is & no one would recommend this type of Dr.
Write something on Yelp telling how she was as a professional. I had Dr.s like this in the 80’s,90’s and now some are ignorant for being so called Dr’s.
I had this happen but don’t let yourself get down because of it. You know yourself.
If she’s part of a hospital group I would send your story to them and give them a link to the IOM report.
Judi, I would have been tempted to stomp hard on the doctor’s toe and then say, “Now think about something else…” How patronizing! 😛
I’m so sorry you have had these bad experiences, but fortunately there are more and more doctors out there who take fibromyalgia seriously. You clearly are a woman of courage and you are absolutely right to soldier on and find a doctor who will help you!
PS- That emoticon looks like a smile, but it was supposed to be a tongue stuck out in disgust.
Jeez……not encouraging is it?
My primary doctor today told me that FM is only depression, that the chronic pain we complain about exists because we “think” about the pain all the time (back to “it’s all in your head”). His example was that if you stub your toe it only hurts until you start to think of something else. The doctor I visited before this profound thinking doctor said, “oh yeah we are all tired and we are all in pain, the “2115 disease”” and with a roll of her eyes and a wave of her hand I was dismissed.
I can not beat this illness but damned if I will be pushed aside and be quiet. My life is just as important as anyone else’s life and I’m going to find a way to take a stand and I will soldier on to find a doctor who embraces the opportunity to learn and to care about his/her patient!
Judi, I’m infuriated as I read this. I’d report your doctor to your health insurance or doctor’s network and then I’d write a scathing review of her and give details. I’m talking about those website that review doctors. This is so unacceptable and you were basically abused. When the not-so-bright doctors can’t make a diagnosis they call it depression.
Yep, you shouldn’t wait time in doctors like this. Just get up and leave.
Also, I’ve said more than once, people should start recording their appts. I did.
Imagina if we have enough data of this? Enough people dismissing the disease, calling it emotional or even just gayness… It would be a fun way to go viral.
Excellent idea Folk!
It’s not only doctors either. I’ve had it for ten years. I wish I had recorded some of the comments made by the lawyer who advised me to sign off my right to health insurance because “you need to be quadriplegic and on a breathing tube, and yyou don’t even look sick” and “I’m not spending thousands of dollars on a medical opinion when you’re just depressed and not trying hard enough.” It was after years of equally uninformed and insensitive doctors that I felt so demoralized and having lost faith in these supposed professionals that I let him bully me this way…I was beyond exhausted with trying to explain how it really is to live with this, and how it affects those around me and my loved ones. Clueless, callous, and careless…and totally lucrative, because he collects a third and put nothing into it.
Cort my comment posted twice may want to remove one not sure if there is a way for me to delete?
581 comments have been received on this op/ed piece in less that 24 hours. It is no longer open to comments. People are reading and responding. This is good, regardless of their points of view. Visibility increases awareness and minds can be changed.
It’s frusrating when despite the new reports, the doctors continue to be in denial. But I was also told by my mom today, that if I wanted to continue having a good relationship with my sister, to avoid discussing my health issues. So what should we expect, if our own family won’t believe and support us, why should we expect any one else too? It’s infuriating.
I’m so sorry that you were treated that way, Fibrosuffer! That is so unkind. But please feel free to discuss your health issues here. We understand and we support you!
Also, have you ever visited the website ME/CFS Community? It is a an online community for people with ME/CFS/SEID or Fibromyalgia. There are specific discussion forums and group for people with FM. Here is a link if you want to check it out: http://cfsknowledgecenter.ning.com/
There seems to be a misconception among some patients as to the role of the IOM. The IOM does not have the authority nor are they mandated to make any changes as recommended in their report. This was mentioned by the chair at the IOM panel discussion. They are not charted by their funder. The NIH decides on the final outcome. NIH can trash it, accept it or change it. To date, nothing has changed! Remember, there is still the HHS P2P report that still has to be published.
I have no sympathy for HHS in shirking their duties and responsibilities by allowing a patient community to suffer such unimaginative mental, emotional and physical abuse at the hands of those who are suppose to help them. To face the horror of pain and suffering, social isolation, poverty, belittlement, lost of life and a career, day after day, week after week, month after month, year after year, requires an accountability of those responsible and leaves no excuses.
Just as the Tuskegee experiment has proven, as patients suffering with the name of hysterical paralysis for MS, governmental organizations task with the responsibilty of taking care of their citizens must not fail in that duty. These were not innocent acts. The agencies charged with the responsibility to oversee healthcare, knew the scope of this illness as pointed out for the last 3 decades by countless advocates and medical experts. To provide support or sympathy to those who did us harm, only mocks the memory of your friend Tom Hennessy.
Ecoclimber,
Your response is eloquent and powerful. It gave me some much needed validation. Please consider writing an op-ed piece for a major publication. Perhaps some gov’t agencies would respond better if they received a little public shaming.
I am poor, alone, live in a very rural area. I’ve lost access to any doctor who acknowledges how sick I am. I just got a new primary because my previous physician laughed every single time I mentioned M/E. or CFIDS or mitochondrial dysfunction, inflammation, pain…etc. The new primary referred me to a neurologist after I had asked for a referral to a rheumatologist. The neuro referred me for…get this: cognitive behavioral therapy. I thought that the Dark Ages were over. I guess not.
That’s exactly what happened to me. You are not alone. I had been through the stream of specialists for years. I was sent to a neurologist who did a muscle biopsy and EMG, both negative as well as blood tests etc. On my last app’t she flat out told me to go see a psychiatrist. I was furious. At that point I had been sick for about 5 years, now 15. I did end up going to a psychiatrist after my family doctor, at that time, had me on slow-acting morphine as well as fentanyl and gabapentin. I was a mess. The psychiatrist I was sent to specialized in addictions-well you can guess how that made me feel. However, he was a God-send in the long-run. Got me off narcotics-yay and helped me through some extremely stressful life events. At first he believed the pain was “in my head” and I know he thought with time and decreased stress I would heal. Well guess what, I have not healed from ME and FM. I got worse and worse. All my doctors were telling me to get back to exercise-I had been very athletic before ME. So not only has psychiatry failed to heal ME, increasing my activity through exercise has failed time and time again. One of the very best and well-thought of psychiatrists in the major city where I live failed. I used to love being active, skied, hiked, swam 42 lengths etc. It was a big part of my life. Did all these doctors think I would just drop it all so I could spend every day in this very boring house, lose my friends, my job! I now and then take a research report from Stanford or any doctor doing research on ME, to my doctors. They now accept I have ME. We now have a clinic that specializes in ME, FM, Lyme etc and I finally was properly diagnosed, confirming ME/FM. There is hope.
Hi Nina,
These Dr’s are not as smart as they think. This is all real what thousand of people go threw.
That is because they can’t prescribe you a pill for your systems…I know I have dealt with this 36 yrs. and have gone to many Dr.’s in my life. They just want to prescribe depression meds.
Which I do better with Solaray St. John’s Wort one daily(900mg) which have no side effects.
Wish you the best & God Bless you.
First, to Judi and anyone else who has doctors who don’t believe them – get a new one! If you can’t find any who believe in the disease, you might be better off with none. These ignoramuses do harm!
And related to that – I refer people to the comments coming in on the NYT op ed article. Very depressing. VERY depressing. The clued ones are obviously those with This Disease (my new name for it). But so many, including a number of doctors, are horribly cruel, ignorant, and even hateful The article and many others like it will have little effect on these people, who represent probably about 90-98% of adults in this country. BUT – get a drug approved, and This Disease will become REAL in their minds. If they see it advertised on TV, must be for a real disease, no matter the name or if people agree with the symptom list.
Coined Microwave Sickness by the military over 50 years ago, electromagnetic radiation induced sickness causes debilitating symptoms. Doctors are clueless on these patients.
Many refer to the symptoms as ElectroHyperSensitivity or EHS which include headaches, skin rashes and prickling, heart palpitations, internal vibrations, sleep disturbances, diabetes, ringing in the ears, etc.
Man-made electromagnetic fields emits electric and magnetic radiation from wired devices. Wireless devices such as WiFi, cell phones, cell towers, iPads, etc emit microwave RF radiation.
Wireless microwave radiation is a Class 2B Possible Carcinogen in the same category as lead, DDT and chloroform.
I am probably in the minority, but I do not see these stories as helpful when they are published in the media. You can see by the comments from doctors and the general public, many of which I read, that people do not want to change their minds or investigate the research and large body of evidence. It is being equated to the trend of ‘everybody’ now thinking they are glucose intolerant, and similar quasi-health crazes.
The kind of thing that will make a difference is when researchers and clinicians themselves publish prominent statements and articles in plain language with bold statements such as:
1. People are being left in horrific pain and without medical treatment which is a VIOLATION OF THEIR HUMAN RIGHTS,
2. There is a large body of clinical and scientific research evidence which shows absolutely that this is a bio-medical illness.
3. That it is diagnosable using specific criteria developed by a body of a esteemed professionals in the field.
4. That Nobel prize winning scientists are studying it as a serious and critical illness THE UNDERSTANDING OF WHICH WILL HAVE BROADER IMPACT UPON OTHER AREAS OF HEALTH which readers may benefit from.
5.That Prof. Lipkin, for one, is having to spend time in crowdfunding efforts for his important bio-medical research, because government bodies are only providing a small fraction of the funding that is allocated to better understood diseases and even things like male pattern baldness.
6. That every doctor takes an oath to do no harm, and has a duty of care to treat patients with respect, common sense, and dignity, as well as to provide medical treatment for medical illnesses…… I could list a few more. These are the statements from someone of the stature of Dr. Klimas in the popular press, NY Times, etc. that will have impact. Following all of those provable facts, I believe that other insulting and dismissive comments would have less effect. Additionally, the health professionals reading it would recognise that this is not just another sensational story about some health craze or a patient lobbying group.
I do not believe that patient lobbying is going to have half the effect that strong statements such as those would have. When the general public have the word of an authority which is not dry data and numbers that mean nothing to them, but statements such as we ME patients all know very well and quote in our own social media sites, there will be outrage which will surround the issue. They don’t yet have a reason to think this is a serious issue.
Why? Because when people complain that they are sick, tired, mistreated, ill, unable to work, etc. our cultures (I am in the UK) have prepared us to think they are at best complainers and at worst thieves who have come up with some way to cheat the public out of hard earned tax dollars.
Petitions for things such as transparency with regard to government contracts, tax evasion, and ecological issues are getting a groundswell of public anger and determination behind them. We are not going to get that kind of momentum and power from articles by one sufferer or one health and science writer talking about an illness. Think BIG and BOLD and hitting the public where it hurts. The public does not want to think that it is being lied to or that people in authority are ignorant and not doing their jobs. The public wants to believe and trust their average family doctor and particularly the specialists/consultants at their local hospital. They do not want to think these people are as clueless as they truly are. It’s going to take a lot to open their eyes to the injustice and ignorance.
I applaud the clinicians and researchers for their work. I know that it is tireless and they do not get half the respect they deserve from their peers. They also become targets of various factions within the ME/CFS community who want to poke holes and distrust them for various positions which differ. I am weary of these factions and fighting in the community. I want to see some real, strong outreach to the public a media campaign, if you will, but not made up of stories such as this one, which though I do not doubt any part of it, I fear has only stirred up more dismissive attitudes in those that saw or read it.
I completely agree. I felt dismay when I saw the article: another personal history that will inflame the doubters. I couldn’t bring myself to read too many of those negative comments; it was too painful. Anything that doesn’t advance scientific understanding will only have a negative effect, imo.
Cort
I appreciated the NYT op/ed and your thoughts about it. The WAPO op/ed concerns me a bit. Can you please share your thoughts on it?
It sucks..in my opinion…:)
The extra symptoms were left out because further studies indicated they weren’t necessary and because they could have lead to higher than normal rates of ME/CFS patients with psychiatric diagnoses being focused on in studies.
The psychiatric disorders were included because high enough rates of psychiatric disorders such as anxiety and depression are present in ME/CFS that you’d have to exclude an unacceptably high of patients (perhaps 25-50%).
Since inflammation appears to account for about 30% of depressed patients it’s very possible that high rates of inflammation induced depression are present in ME/CFS (and FM). That could be an important subset of patients that you wouldn’t want to exclude from research studies and clinical trials.
It’s important to note that including patients with anxiety and depression and ME/CFS in ME/CFS research isn’t new. People with anxiety and depression have NEVER been a priori excluded from research studies. Sometimes researchers choose to exclude them and sometimes they don’t. The Fukuda definition excludes extreme mental disorders like schizophrenia from it but not anxiety and depression.
The article also downplayed the fact that many ME/CFS experts were included in the committee and others reviewed it. For me I give Klimas, Bateman, Chu, Lerner, Natelson, Davis plus Peterson and others the benefit of the doubt. I think they know what they’re talking about when they’re talking about exclusionary and other aspects of the report.
(I’m going to post this comment below Lisa’s comment as well)
Cort, another thing that bothered me was the article’s reference to a “committee of eight non-experts and seven experts.” I wonder if the average member of the public reading the article might think that “non-experts” refers to eight laypeople, not eight highly respected medical doctors who simply weren’t specialists in ME/CFS prior to joining the committee. The last thing we need is the public thinking that this report was prepared largely by “non-experts.”
I feel that the presence of a diverse group of doctors only strengthened the report. Take the chairperson Dr. Ellen Wright Clayton for example. ME/CFS was not her previous area of specialty, but she was outstanding at the press conference. I actually got tears in my eyes listening to her passionately advocate for our community.
Any patients who have not yet seen the press conference, I highly recommend watching or listening to it: https://www.youtube.com/watch?v=Uj1l-tmkRvw
Thanks Cort.
Both OpEds concern me…I feel they do us a diservice by sounding like they represent us all and even sounding knowledgable until they go off into their own stories and their own theories and beliefs as to what helps. The WAPO rejects the IOM completely with arguments that to me are not supportable. I think the public has enough trouble sorting through the scientific reports to then be further confused with high profile personal opinions Reading the NYT comments was depressing and draining. I didn’t have the courage to look at the WAPO comments. I think our Experts are doing a great job on our behalf and the non-experts were impressed by the evidence.
This disease, and the people who have it, is (are) complicated and diverse. The IOM has captured the key symptoms we share, and the many others will probably eventually separate out into the sub-types. And Cort, you do an amazing job of synthesizing all this complex information for us. I can’t thank you enough. You are my credible go-to source for info on ME/CFS/SEIDS.
Thankyou again.
Robyn
Good news on a Canadian news site today!
“Researchers say they have found ‘unequivocal’ evidence that chronic fatigue syndrome is not an imaginary illness, but a genuine condition that causes the immune system to go into overdrive, leaving patients feeling perpetually exhausted.”
“We now have evidence confirming what millions of people with this disease already know: that (chronic fatigue syndrome) isn’t psychological,” lead author Dr. Mady Hornig, with the Center for Infection and Immunity and associate professor of Epidemiology at Columbia University, said in a statement.
http://www.ctvnews.ca/health/chronic-fatigue-a-real-measurable-illness-say-researchers-1.2257005
The full results of their findings are published in Science Advances:
http://advances.sciencemag.org/content/1/1/e1400121
First biological proof that ME is real found by scientists
Columbia University has found that changes to the immune system represent ‘the first robust physical evidence’ that ME is a biological illness rather than a psychological disorder
http://www.telegraph.co.uk/news/science/science-news/11440372/First-biological-proof-that-ME-is-real-found-by-scientists.html
Cort, thanks for this. I find you last few paragraphs hugely important:
“There is an immense amount of suffering in ME/CFS and FM but I believe suffering must be present in the NIH as well. I think some people there know this disease is real. That it causes profound suffering; that they as an organization have a lot to answer for.
Knowing ME/CFS is real and doing nothing about it – that is suffering as well. Burying an illness like ME/CFS and knowing you’re burying it – that is painful.
It takes a lot of courage, however, to take a stand that ME/CFS is real and serious in an environment that’s been belittling it for decades. To take a stand that we are as a organization have to change. That we can’t go on this takes enormous courage.
We have to help them out. The IOM and P2P reports and Julie’s piece are giving them room to speak out and we have to keep creating that room. We have to keep creating the “space” they need to come forward – to advocate for change – to be our partners. Every piece like this, every positive action we take is a blow for freedom for us – and for them.”
Well put.
Let’s fight for change – most importantly for public funding on biomedical ME/CFS research on par with that of other similar diseases.
Read more: Powerful New York Times Op-ed Strikes Blow For Chronic Fatigue Syndrome http://www.cortjohnson.org/blog/2015/02/25/powerful-new-york-times-op-ed-strikes-blow-chronic-fatigue-syndrome/
Yes, indeed! Thanks Anne 🙂