With its regular news updates, information on drugs and diseases, quizzes, conference overviews, and educational courses, Medscape, which just turned 20 years old, strives to be a kind of one-stop shop for medical professionals (and consumers). It appears to be succeeding.
Dr. Unger chose Medscape to get the word out on ME/CFS for a good reason. Not only will her message get out to more doctors but the medical website has had a surprisingly enlightened approach to ME/CFS.
Producing dozens of news stories a day, it is, according to SimilarWeb, the #2 ranked health and medicine website.
Easily the largest provider of continuing medical education credits (CME’s) globally, Medscape is, with its active user base of 725,000 MD’s and 1,700,000 nurses, the place to go for healthcare providers to get their CME credits. Its CME courses are accredited by three separate accrediting organizations.
Medscape doesn’t just sit back and let doctors come to them. It uses sophisticated algorithms and targeted emails, search engine optimization, and other features to get its articles and courses before as many applicable health care professionals as possible.
Given all that, it’s no wonder the CDC went to Medscape to get its video and CME course on ME/CFS produced and distributed to the widest audience possible.
The CDC Video and CME Course
Dr. Unger’s video introduction to ME/CFS “Chronic Fatigue Syndrome: It’s Real and We Can Do Better” hits the right notes. (You have to register for Medscape to see it.)
It starts off by providing Dr. Unger’s bona fides – she’s Chief of the CDC’s Chronic Viral Diseases Branch (CVDB) of the Division of High-Consequence Pathogens and Pathology (DHCPP). Striving for clarity, Unger delivers a sober, fact-based overview of the disease that emphasizes its seriousness and biological underpinnings, and ends by telling doctors that they can do better.
From Dr Unger’s talk:
An estimated 836,000 to 2.5 million Americans suffer from ME/CFS, a serious, long-term illness that can severely impair the ability of those affected to live normal lives. But the majority of those affected are not diagnosed, and many struggle with symptoms for years before receiving a diagnosis.
The absence of a definitive diagnostic test contributes to this problem. In addition, most medical schools in the United States do not include ME/CFS in their physician training. Less than one third of medical school curricula and less than half of medical textbooks in the United States address ME/CFS, so many healthcare providers need more information about this condition.
ME/CFS is a biological illness, not a psychological disorder. Patients with ME/CFS are neither malingering nor seeking secondary gain.
The CDC’s CME course on diagnosing and managing ME/CFS, led by Dr. Bateman and featuring Dr. Klimas, Dr. Montoya and Dr. Reza, debuted this February on Medscape. Stephen Murphy, a Director of Public Health Solutions for WebMD (which now owns Medscape), didn’t have exact figures, but thought it has probably been seen by 4,000-5,000 MD’s and nurses thus far. The fact that it’s sponsored by the leading public health agency in the U.S. – the CDC – will, he thinks, undoubtedly help boost its viewership.
Murphy, who seems well versed in ME/CFS, reported that he had a personal experience with it – a relative in the U.K. was diagnosed with M.E. – and he understands the urgent need for better informed physicians. Cutting through the controversy, he says that Medscape’s job is simply to make the medical science around the disease available to as many people as possible.
A More Enlightened Approach to ME/CFS
Enlightened major medical websites aren’t par for the course for ME/CFS, but if we’re going to have one good medical website, it might as well be Medscape. While other medical websites sometimes seem stuck in the dark ages at times, Medscape, the number one physician portal, is definitely ahead of the curve.
Medscape did include the recent Reuters article – which asserted that hostile ME/CFS patients were driving CBT/GET researchers out of the field – on its website, but in general, its ME/CFS pieces have been excellent. They have included:
- Low T3 syndrome and ME/CFS
- The Clinician’s Coalition
- How an over-active immune response may trigger ME/CFS
- Mast cell activation in ME/CFS
- Energy hypometabolism and ME/CFS
- Using low dose naltrexone in ME/CFS and FM.
One particularly impactive article – given Medscape’s doctor and nurse-permeated audience – by Miriam Tucker, called ”Chronic Fatigue Syndrome Takes Down Doctors, Too” focused on four doctors with ME/CFS. They included a former chief of surgery at Long Beach Memorial Medical Center, a former family physician and Dutch national field hockey champion, and two internists.
Conclusion
Dr. Unger’s video, the new CME course and most of Medscape’s offerings on ME/CFS have been helpful indeed. Given Medscape’s prominence in the medical field and its ability to target doctors and nurses, the fact that it’s offering up good information about ME/CFS is good news indeed.
Update – Miriam Tucker offers up a superb review of the 2019 NIH Conference on ME/CFS on Medscape
- Coming up: How Pandora created a nation-wide CME course on ME/CFS
Hooay! I went on Medscape and watched Dr. Unger’s presentation, which was an excellent outreach to physicians. Then I looked at the updated materials on the CDC site, and wow, what a difference since the last time I looked at it. All of the advocacy is paying off, y’all.
How did you get there? I supposedly have a Medscape account but when I log in, I don’t see an option to see Dr. Unger’s presentation.
I even did not logged in but searched just medscape Me cfs dokter Unger and I could watch the video. For the rest, to read you have to log in. Hope this helps!
Thanks, Konijn. Your method worked perfectly!
Hi Sara R., because you where so enthousiastic about the cdc website I looked myself again. And under symptoms, maybe in the beginning of my illness, I now (decades off illnes and almost 98% bedbound for so long and even 1/2 year totally bedbound, even not being able to eat properly in bed because of no strenght anymore… I do not recognise myself in their description off the illness anymore! so help, where are for excample the muscletwitshes, the fasciculations, the burning pains, the pressure pains in my leggs, and so much more? they say a few days bedbound after overexcertion and in PEM!??? they say people may not know they have me/cfs, I could not other then really notice there was something severe wrong, could not work anymore, could not do the household, etc
I ask myself now if they are even speaking about me? If the NIH who found on a very small number of well screened patients that 1/3th where misdiagnosed.
what has for excample ron davis son then if not Me/cfs.
Or are they just describing it less serious then it is? People for decades bedbound and tubefed? Only able to brush there theith. etc
do you recognise yourself in this? do other recognise thereself in this? I often have even no strenght to breath properly! So much more complaints!
I do not know what to think and do anymore….
I had to reply to ur feeling on this article because what u wrote in response is my life exactly. I, too, have leg pressure pain that I can barely withstand the pain. My legs feel as tho they r in a giant meat press n stop just prior to crushing my bones. It’s a deep, deadly pressure that is never ending n sometimes I pray to get thru th he next ten minutes much less an entire day, only to awaken n redo the suffering all over again. 22 years now with lyme n cfs, bedridden now for 16.
I can stand for about 3 min n short walks to get to bathroom n kitchen. Even sitting is an issue, after about 10 minutes, my legs go numb n walking is then so painful n I need a wheelchair. I dont know if I fit in the normal group but u described my life exactly. At age 43, I was starting my own business, raising a family ,walking 5 miles a day. I’m loosing lots of weight now n appetite is decreasing.
It’s a lonely, misunderstood battle that I mostly take alone but after 33 doctors n millions of dollars I’m no longer seeking treatment. I really pray for the suffering to end. Thank u for putting into words my life n letting me know, I’m not alone. I’m so sorry ur suffering too n the pain is so intense I dont even try n explain it anymore. I have the perfect fake smile as folks tell me I dont look sick at all. N stress, oh my, stress, sinks me lower into the bed, I’m unable to recover like others.i pray others arent living my life. I pray God will allow me into His kingdom, as my faith is the only thing that sustains me. Love n good health to u all
I’m so sorry things are difficult for you Rita. I hope you can find a way to keep on. You never know what the future will bring. We have a story coming up of a person who was as ill as you and is now working. It can happen. Please have hope and hang in there.
I’m so sorry you suffer so severely
Hi Konijn – I am so sorry you are suffering so. I think the language they use for the strictly medical definition strips out the true suffering behind the almost innocent sounding symptoms. It seems to me that happens with a lot of illnesses, so hopefully the doctors reading the info understand the real pain behind the symptoms. “Malaise” has a real medical meaning to doctors, for example, though it sounds sort of like “boredom” to most laypeople, I think.
The CDC has made big strides. I hope that is getting across. It’s not the CDC of old.
When will the CDC make a public statement that there is no reliable evidence for the effectiveness of Graded Exercise Therapy and Cognitive Behavioral Therapy as treatments for ME/CFS?
Quietly removing GET and CBT from their website after actively promoting them for years is a poor way to reeducate doctors. Thousands of old CDC toolkits promoting GET and CDC are still out there, doctors still follow them, and the CDC has made no attempt to recall.
The Mayo Clinic and many other providers today prescribe GET and CBT for ME/CFS. Where is the CDC on this?
After promoting bad science for years, the CDC passively changes direction. It’s not enough, Dr. Unger. Not nearly enough.
Read this loud & very very clear it was the CDC that had a hallway within that carried on its walls Comedy Jokes about people with ME/CFS I say SREW THE CDC they can all Burn in the pits of Hell now & the same goes for the other Monster the NIH there is no forgiveness for these Hoods ‘ever’ expect big lawsuits they will happen & full Public Criminal Tribunals to come 100%
I totally agree, they have screwed us from day one! Unger was one of the biggest preachers of ME/CFS being caused by a psycho somatic illness, but “Oh,God bless them, even if it is all in their head the illness is still real for them”! Thanks for nothing! Of course ,ME/CFS could not exist because it would make them personal blade liable for all the damage they have caused while pushing their biologicals and piece of crap HPV vaccines-– Known to be one of the instigating causes of ME. They have done nothing, but cover up the existence of this disease, while knowing full well how devastating it is, for the past 50 years!
Chris! Do you think our ME/CFS experts believe ME/CFS is a pyschosomatic disease? If you don’t then please how explain how Dr Unger a supposed pyschosomaticist is devoting the bulk of her program to figuring out how they diagnose and treat ME/CFS.
All you have to do is look at the video and check out the CME course (and see what the CDC is publishing) to understand that Dr. Unger believes ME/CFS is a biological illness.
Aidan – that was what 30 years ago! None of the people who worked at the CDC program then are working on it now – and haven’t for a long time.
Since that time the CDC published the prevalence and economic studies that have benefited us greatly. They have done important exercise studies. One project filled up the entire Pharmacogenomics journal. Dr. Unger is and has been using ME/cFS experts in her education program, they are engaged in the mult-site study involved the top ME/cFS experts and have published nothing but biological research for years.
They may not be perfect but it’s time to give up the CDC hate!
I’m in Australia. Does anyone know if this can be used to educate our doctors here or would our medical board have to approve it or something?
Kathleen Spinks, you might have to educate the doctors in Australia yourself, starting with your own. I doubt you could do much in a 10 min. consultation with the clock ticking in the foreground.
Kathleen, I don’t know how your political system works but here in the US, I would ask my US Congressional representative (I’m lucky, though; mine is sympathetic to the concerns of CFS patients). But that’s the route I’d take to find out. Or, the stealth route, of simply sending it or presenting it at doctor appointments, to your doctors.
In the meantime, in the UK
http://www.positivehealth.com/article/cfs-me/what-can-we-expect-from-the-current-review-of-nice-guideline-cg53
CFS/ME is an inflammatory illness. Symptoms, cytokine levels and other immune markers, and brain scans support this. There is mounting evidence of a microbial/infectious contribution. Many, if not all sufferers have evidence of at least one infection. Epstein-Barr virus has been implicated, however a high percentage of the general public have antibodies to it. It is possible that another, yet unidentified virus might be at work. There are also environmental problems such as mold exposure that can trigger such an inflammatory illness. High on the list of suspects are some vector-borne (ticks, fleas, biting flies) infections: the Borrelias (Lyme), Bartonellas, Mycoplasmas, and perhaps others, all which can produce identical symptoms. Of note, vectors are not neccessary, as these infections are known to pass from mother to unborn child, and are found in breast milk. They are also found in vaginal secretions and semen, and likely sexually transmitted. Testing for these organisms is problematic, as these stealth infections do not readily trigger antibodies and are in low numbers in blood. Current CDC recommended 2 tier testing for Lyme misses about 70% of cases. It is very likely that a CFS/ME patient has undiagnosed Lyme disease.
I am an example. I meet the criteria for CFS/ME and fibromyalgia, which I initially self-diagnosed in 1988, when these conditions were more unknown and largely deemed psychosomatic. Years later they were confirmed by several physicians. But it took 32 years to discover my Lyme, Bartonella henselae, Babesia microti, Mycoplasma pneumoniae, Chlamydia pneumoniae, Rickettsia rikettsiae (Rocky Mountain Spotted Fever), Typhus, Funneliformis mosseae (a fungus that creates free-floating biofilms), and reactivated Epstein-Barr virus. There is also mold exposure illness and elevated levels of heavy metals. There is major immune dysregulation, and involvement of every body system. Commonly ordered tests are nearly always in normal range, despite profound symptoms. Deeper investigations revealed the infections and resultant inflammation and damage. Treatment is ongoing.
While some do respond to lengthy antibiotics, others do not, even when environmental and nutritional factors are addressed. These infections, once established, are extremely difficult to irradicate, as they live in immune-privileged niches such as deep tissues, inside cells, and in biofilms, where antibiotics and natural immunity can fail to penetrate. Treatment failure and infection persistence is common.
Thus far, the CDC’s handling of such infections has been abysmal. It is heartening to see an improvement in the CDC’s views on CFS/ME, but recommendations do not go far enough. Clinicians must do a much more thorough work-up, taking into account the above mentioned possible contributors. Current recommendations for palliative treatment are good, but also do not go far enough, as many sufferers might also require stronger medications for sleep or pain, including currently maligned benzodiazepines and opioids. Another CDC recommendation problem, and another issue I will not address here.
It’s been EIGHT YEARS since the CDC announced their multi-site study with much fanfare and horn-blowing.
There have been ZERO publications (excluding the 2017 protocol paper).
So tell me again about how hard they are working to find real answers.