The reverberations from the IOM Report continue. In their first official response to the 300 plus page IOM Report (Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness) the CDC stated it was archiving both its brochure on ME/CFS: “Recognition and Management of CFS: A Resource Guide for Health Care Professionals“and it’s much maligned Toolkit.
An anachronism from the day it was published, the 17 page, large-type Toolkit looked like a cartoon copy of how to identify and treat ME/CFS next to the 42 page, densely detailed IACFS/ME Primer released in 2012. It was a Toolkit with decidedly few tools.
An anachronism from the day it was published, the Toolkit was finally knocked out by the IOM report
The limited recommendations in the Toolkit, and before that on the CDC website, have been a source of frustrations for patients and knowledgeable medical providers for many years. It’s been exhibit one for patients wishing to portray the CDC as being out of touch.
The Toolkit stated that a team of doctors and mental health professionals and physical therapists were best suited to treat ME/CFS. It emphasized therapies that addressed coping, symptoms and activity management.
Several assertions in the Toolkit that came out of the CDC’s randomly sampled population studies using the Empirical Definition people were controversial. They included statements that people ME/CFS are more likely to be obese, experience insulin resistance and have metabolic syndrome.
To its credit, the Toolkit did note the need for lower doses of medication, asserted that antidepressants were effective only for those with clinical depression and, while promoting exercise, provided substantial warnings about it.
Cognitive behavioral therapy (CBT), graded exercise therapy (GET) and sleep, however, were the only treatments covered in any kind of depth. While the Toolkit stated exercise programs should not increase patients symptoms, it also suggested that exercise therapy would ultimately enable people with ME/CFS to “go about their daily life(s)”.
The Toolkit has been buried deep in the CDC’s website.
In contrast to the Primer which identified what are now accepted as core symptoms of the disorder, the Toolkit stuck with symptoms associated with the 20 year old Fukuda definition. The Toolkit identified seven co-morbid condition – several of which are questionable; the Primer – 48. The Toolkit identified ten illnesses that can mimic ME/CFS; the Primer – 55.
The Toolkit provided no specific recommendations on drug treatments; the Primer provided 49 recommendations. The Toolkit provided no recommendations for managing pain; the primer provided recommendations on both non-drug and drug approaches to pain. The Toolkit provided no recommendations on cognitive issues, orthostatic intolerance, gut problems, etc. The list goes on and on.
The Toolkit has influenced the treatment recommendations on many major medical websites. Now, in response to the IOM Report, it’s essentially gone. You can find an archived version of it on the website, but the CDC is clearly not standing by the Toolkit anymore.
It’s abrupt removal suggests major changes are in store. With the IOM report proposing new diagnostic protocols that was expected. It couldn’t have happened too soon.
It’s about *(#*^$% time.
Well said…:)
I concur.
I was about to say the same thing!
Really! Its way past time, but maybe this IS a Gamechanger!
I agree this IS the Game changer that has been needed for many years. We have to keep on keeping on with this battle to get it right once and for all. Millions of people lives are depending on this now that the IOM is out~ so many years of suffering and playing with the medical health of so many only caused the stigma to remain in the box~ well it’s coming out now once and for all I pray~ being in remission and with only minimal residual side effects after having this since 1987 I am one of the blessed ones~ I hope to be an inspiration to those that can see it that way and help others to maintain and obtain the quality of life that they are able to reach~ we are not all the same with this illness which means different levels of success will vary from time to time but in time I do hope the majority of the masses will get the much needed compassion and help that they need~
As we say in the South, “Hot damn!”
Great timing, I dropped off a copy of the IOM report (the clinicians version) to my Rheumatologist today who I will be seeing next week to discuss a diagnosis of ME/CFS SEID. I hope he will spend time to read it and we can finally get on with treating me for this illness.
Can you provide a link to the clinicians report, so I can print it for my rheumy?
http://iom.edu/~/media/Files/Report%20Files/2015/MECFS/MECFScliniciansguide.pdf
The Presentation Slides are also a great summary although if you wanted to give these to someone, I suggest not printing the whole thing. For me, pages 5-30 are the key ones. http://www.iom.edu/Reports/2015/ME-CFS.aspx
Physically lying here ~ Mentally jumping on the bed, doing the Macarena, Roger Rabbit, Running Man, & Flipping Cart Wheels; all while shouting,”Oh yeah, we knew it, you blew it, you wronged it, re-“right” it!!!
This is positive news. However, as a patient who has been hanging on a thread one has to ask; how could dr Beth Unger with her background and multiple visits to clinical experts sites where she was quite aware of the viral, immunological, and inflammatory dysfunction of this disease NOT have the moral code to recommend Ampligen approval and archiving of the toolkit. Surely , it shouldn’t take the IOM’s direction to make this change.its troubling that while patients die or linger in existence person of knowledge and influence like Dr Unger cannot do more sooner than waiting on the Iom. Peoples lives are at stake and until appointed officials in government held public health position take action on their own, patients will continue to suffer in a bureacratic system. It takes a person of character who understands the suffering to stand up to bureaucracy.
Totally agree, but this is a move in the right direction, clearly they are starting to feel the pressure. Hopefully, if its true compassion they will be pushing for Ampligen, we deserve that treatment.
My guess is that Dr. Unger may have some constraints put on her by the system she’s in. She may have difficulty recommending anything that doesn’t have study evidence to back it up. Hopefully the ME/CFS experts study will provide her that and we’ll have a Toolkit that fits what ME/CFS doctors are doing that’s helpful for people with this disease.
I am cautiously optimistic about this development but will wait to see what they replace it with before I dance in the streets.
During the recent update presentation by Dr.’s Unger and Montoya, Dr. Unger did say that this would be changing. They have a process for change and they are following it. Like many careful processes, it is not happening quickly, but it is happening, and I think it will be well thought out and mirror the IOM report.
Yay, progress!
Yeah, that was the brochure/toolkit for that new fangled yuppie disease.
Yippeeeeee!
Yippee!
Fabulous news. I’m also bringing the 4-page IOM synopsis to every doctor I see (as my appointments come up). I’ve found it helps for me to sort of joke with them that I about sparing them the full 304-page report (of course none of this is a joke, but sugar helps more than vinegar in building any relationship). I will continue to also print out a copy of the primer and take it to every doctor I see. If we bring it to them and then they see some of this news on their own, we double the impact.
Dr Unger ought to be the next thing to get archived by the CDC.
Her refusal to accept a two day CPET protocol for her research is ridiculous and her position is (in so many ways) untenable.
She is a waste of the space she occupies and the air that she breathes. Get rid of her.
Wow, really? Attacking the people who are trying to help is a great way to drive every last one of them out of ME/CFS!
You may be quite fond of the 2 day exercise test, but it is expensive, has yet to be replicated on a large scale, and it tends to cause harm. I know at least 5 people who have taken the test and had long lasting crashes from it, as in 6 months to a year and a half- and counting. I don’t know anyone with ME/CFS who has had it who would be willing to ever take it again, or advise anyone else to take it, not even one woman whose results finally got her social security disability.
Dr. Unger is looking for useful markers and tools that do not harm the patient/research subject. That’s a good thing. If she hangs in here with us, despite the abuse from patients, and sacrificing a better income to do so, she will do us all a great good.
I Soooooo agree!
I have to disagree with this. Dr. Unger’s taking a comprehensive look at how ME/CFS experts diagnose and treat ME/CFS patients. Despite its shortcomings the exercise study will also have real value. (Just about any exercise study is a good study.) Dr. Unger has also explored natural killer cell dysfunction, telomere length and gynecological issues in ME/CFS recently. They may or may not be my top priorities but she’s concentrating on physiological studies.
We could and have had far worse.
No test should have a harm to patient ratio as this one does. There are many tests that can go awry such as a spinal tap but there is also a very high success rate of spinal taps that do not harm the patient. This test CPET always harms the ME/CFS patient and to a great degree.
Blood tests, even a spinal tap and the very expensive fMRI are the way to go.
As someone said above, people’s lives are at stake. It is so hard feeling so bad to not have a life and yet people see us and can’t tell there is anything wrong. We lose our identity that we had in our careers. The lost years of income that all started from having a virus that then takes us down an unknown and frightening road. We all share it and with all the big businesses that have lost employees to this illness, you would think there would be more funding behind it. My mind is just tired from all these years. What a waste. How much do we even know about whether our life will end prematurely due to this illness.
This belongs to the USDOJ. They all knew what caused ALL the neurological syndromes, psych and cancers when they gave IT to you for decades!
http://www.lymeneteurope.org/forum/viewtopic.php?f=13&t=5147&start=20
They are up against a wall trying to decide if they are going to treat everything or exterminate everything.
YOUR lives were more important than trillions spent on lies for 14yrs. of WAR “they never even budgeted”.
Mel– I am trying to find a trusted FB friend to help me out. I need your help–FB locked me out of my account–they want ID and I am not sure I want to give it to them–not now anyway– I guess I overdid it–posted too much anit-vax stuff and such. Please post this on my wall so my FB friends will know what happened. I guess we should all have plan B for staying in contact—maybe even plan C–.
Message from Elena—“Dear FB friends—my account has been blocked until I submit ID so please continue to post on my wall– reply to past posts—I do not know how long it will be before I can sort this out. Thank you and I look forward to hearing from you.–
Elena”
Yahoo!