Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness
Institute of Medicine: Beyond Myalgic... - Myalgic Encephalo...
Institute of Medicine
Written by
Ian123
To view profiles and participate in discussions please or .
25 Replies
•
Thanks, Ian!
Very important report given by the IOM today!
Very strong recommendations.
Good work on the part of the IOM. Let's hope others follow suit!
This is going to upset some clinicians. Some do not want to deal with this illness at all.
The IOM says they each/all need to diagnose and treat symptoms. Period.
Should be very interesting.
Disability insurers can no longer try to demand "specialists" make the diagnosis.
Crazy_Horse
Still digesting but think this will be a historic event that I am sure will be long remembered.
I am so pleased for all the Americans that this will help and hope some of that report will change how cases are treat in the UK.
News reaction eurekalert.org/pub_releases...
Ian, these is so much to process.
As you know, both JAMA and The Annals of Internal Medicine are expected to comment TODAY. No delaying. TODAY.
I have attended many live public meetings of this sort, on various levels over many years, and I have never heard such strong language, such strong conviction!
The IOM means business in carrying out their charge(s) on this one!
Since when does the IOM say, "Act up?" It was said today to advocates.
I am stunned, in truth. I am used to listening to vague nonsense from these types of announcements.
I am still processing it all.
Must give the NIH a wake up and smell the coffee call after President Obama statement in 2011 phoenixrising.me/archives/5419
Great link, Ian. The article you have cited is comprehensive and well-done!
I hope people will read that link!
Thanks, Ian!
It will be very interesting to see how this all unfolds.
Read the New York Times article - the comments seemed unhappy with the name one pointing out that SEID spelt backwards was not a good outcome. Leonard Jason predicts the name will not be well received well.blogs.nytimes.com/2015... but the steps taken in recognising PEM as a defining feature are getting positive responses.
Goodbye chronic fatigue news.sciencemag.org/health/...
The name spelled backwards -- LOL! Surprised they did not recognize this.
I am not excited about the name, at all. It is not a sexy name.
I am excited about the IOM findings and their recommendations!
The IOM also did a lot of work to make downloads available to anyone, in order that anyone interested have the info, take it to a physician, etc.
They had also spoken clearly about the fact that their scientifically based reports are powerful tools for advocates.
What will this mean for possible Ampligen treatment being made available?
Is Ampligen all they claim? If so, buy stock in that Pharma company now, as the numbers of people suffering and not yet diagnosed, according to the IOM are staggering! Which other potential treatments will be developed and made available?
Writing in my sleep.
Catch up in a few hours!
Crazy_Horse
Given the Ampligen some thought and it's not effective in all cases so they will not have the entire market, a reason for others doing pharma research if they can see money can be made.
Clarion call for physicians and researchers I have a feeling of watching history in the making with the game changing statements.
It makes sense that Ampligen will not work for all. However, I'm guessing it will be one of the drugs insurers require as attempted treatment before trying others, even if there are others to try. Insurers usually have requirements of which drugs must be attempted and must show efficacy failure for any given patient before authorization is given for a trial of the newer drugs.
Just a guess.
Crazy_Horse
Will the FDA bring forward drugs that it previously blocked at stage three trials (anti virals I think) how far will things move with insurance companies trying their level best at avoiding any more than CBT and GET
The times they are a changing 
Just for fun:
The Federal Advisory's Panel's former vote on Ampligen rejected Ampligen for approval at that time, with a close vote of 8 against 5 voting in favor of Ampligen's approval at that time.
wsj.com/articles/SB10001424...
The cost of Beta Interferon treatment in MS had many determined that the pharmaceutical companies would never again have such an opportunity as they would stone wall everything.
Proposing change on the WHO G93.3 ICD 10 is already raising concerns
copied from facebook facebook.com/jerrold.spinhirne
The IOM's ME/CFS Report Makes Significant Errors Regarding the International Classification of ME and CFS
The Institute of Medicine's ME/CFS report, issued today February 10, 2015, makes significant errors and misrepresentations regarding the international classification of myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS). On page 27, the report states: Quote
In the World Health Organization’s International Classification of Diseases, Tenth Revision, which will be implemented in October 2015, the clinical descriptions of ME and CFS are identical, yet ME is classified as a disorder of the neurologic system (ICD G93.3), while CFS is considered a synonym for chronic fatigue, which is classified under “signs, symptoms, and abnormal clinical and laboratory findings, not elsewhere classified” (ICDR53.82). [1]
Reference 1 is: Quote
The World Health Organization’s International Classification of Diseases, Tenth Revision, can be accessed at icd10data.com/ICD10CM/Codes (accessed January 13, 2015).
In the first place, the ICD-10 referred to here is NOT the World Health Organization's ICD-10, but the US version, based on the WHO ICD-10, called ICD-10-CM. CM stands for "Clinical Modification." These limited modifications are made by individual countries following WHO guidelines. In the US, ICD-10-CM is produced by the National Center for Health Statistics, a part of the Centers for Disease Control. The official version of the 2015 ICD-10-CM can be downloaded from the CDC's website. cdc.gov/nchs/icd/icd10cm.ht... The official 2015 ICD-10-CM can also be accessed online here: cdn.roadto10.org/wp-uploads...
Apparently the IOM committee was not sufficiently familiar with the US ICD-10-CM to find the official version online. The official ICD-10-CM tabular list does NOT include "clinical descriptions" of diagnostic terms – only the terms and their classification coding. What the IOM committee has done is to stumble upon a commercial website, ICD10Data.com, that adds clinical descriptions to diagnostic terms gathered using software from various sources. These clinical descriptions are added by the site owners, Alkaline Software, to help market use of their website to medical personnel to increase ad revenue. The clinical descriptions are not provided by the NCHS, the CDC, or any government agency. icd9data.com/AboutUs/
The link given in the IOM report does not lead to the "World Health Organization's International Classification of Diseases, Tenth Revision," but to this unofficial, commercial version of the US ICD-10-CM. It is of no consequence whatsoever that Alkaline Software has added "identical" clinical descriptions of ME and CFS to their modified, commercialized version of the ICD-10-CM. The current published consensus case definitions of ME and CFS, the 2011 ME ICC and the 1994 CDC Fukuda "International" criteria, respectively, are indeed very different.
Based on this blunder, the IOM committee is recommending a new coding be added for their new "systemic exertion intolerance disease": Quote
A new code should be assigned to this disorder [sic] in the International Classification of Diseases, Tenth Edition (ICD-10) [sic], that is not linked to “chronic fatigue” or “neurasthenia." [Recommendation 1, page 8]
Myalgic encephalomyelitis has been classified as a neurological disease, G93.3, by the actual World Health Organization ICD since 1969. The WHO ICD-10 was endorsed in May 1990 by the World Health Assembly and included ME as G93.3, as did WHO ICD-9. ME was omitted from the US version ICD-9-CM by the CDC despite its continued inclusion in the WHO ICD-9. On October 1, 2015, ICD-10-CM, based on the 25-year-old WHO ICD-10, will become official in the US and also will include ME as G93.3 and specifically exclude CFS from the neurological classification.
The 2005 CCC Overview, 2011 ICC, and 2012 IC Primer all specifically state the disease they define should be coded as G93.3 in the diseases of the nervous system section of the ICD. Neither the CCC nor ICC, developed by far more qualified panels than the IOM ME/CFS committee, considers ME as falling under any umbrella term, "ME/CFS," that includes CFS patients without ME, as does the IOM ME/CFS report.
Instead of hiring the IOM to create a new unclassifiable diagnosis with a silly-sounding name, all the US Department of Health and Human Services needed to do was advise doctors to use the existing CCC or ME ICC to diagnose ME patients and code the diagnosis as ICD-10-CM G93.3 for billing and reporting purposes after October 1, 2015. Any US doctor credulous enough to consult the IOM ME/CFS report will receive no guidance on how to make or code a differential diagnosis of ME.
Thanks, Ian! Very nice work on your part!
Crazy_Horse
Watching how events unfold elsewhere spreads ideas of what is possible within the areas that directly impact our own illness. Giving a name that acknowledges exertion causes deterioration will present NIH P2P with problems as they are still considering GET as one of the best treatments as we do in the UK. Personally I consider Graded Exercise Therapy the worst medical experiment since Josef Mengele, the sooner stopped the fewer it will have harmed.
I agree! My doctors have never suggested any of these approaches. They think they are erroneous approaches.
There was a time in the UK when the psychiatrists were putting people in secure mental units for refusing the CBT and GET treatments with Sophia Mirza case a prime example.
Yikes! : (
Sadly tbis is still happening to many children with ME who are forcibly removed from their parents and sectioned in mental health units to undergo CBT and GET and when it makes the child worse rather than better the psychistrists decide that the child actually doesn't want to get better and retracts the ME diagnosis - because 'CFS/ME' 'always' improves with these 'treatments' according to psychiatrists and too many paediatricians - completely and re-labels the child with a mental illness.
The parents are allowed very little if any access to their children and haven to fight the courts to get back access to their own children.
Many very sick children with ME are still to this day being abused by the system with psychistrists managing their cases, fatigue teams believing ME is psychological or otherwise blaming the parents and
because of the
belief that CBT
and GET are infallible cures.
Children are even more badly effected by this by the widespread belief heavily promoted by Esther Crawley - a prominent childhood ''CFS/ME' paediatrician who is strongly affiliated with Wessley - that 'most children can make a full recovery with CBT and GET/GAT.
Except the figures that suggests this - much less strongly than is ckaimed - are only held up by the fact children get their diagnosis of ME retracted by psychistrists when they get worse with CBT and GET so it is a cover-up sham. And most children don't make a full recovery.
They can improve substantially but not all children do and they can relapse still.
And they have more chance of improving if they can get help with pacing including reduced school attendance, and if they are lucky enough to avoid GET and the all-too-common coercion of children and parents into a 'graded' progressive increase in school attendance regardless of worse symptoms, which unsurprisingly is very destructive but is still encouraged and often pushed and even frequently coerced with the use of threats of child protection proceedings if families don't make the child attend school more even when too Ill by the fatigue teams, schools and GPs.
So, tragically the forced hospitalisation in psychiatric units for enforced GET and CBT is still happening far too much in the UK.
If you want source of these facts visit Tymes Trust website who help children and families dealing with these crises.
It is also happening to adults who are very severely affected with ME.
I know of several cases where this is happening to people and one who has been kept in a nursing home for years against his and his mother's wishes for enforced 'treatment' as in adults they force people by declaring they don't have 'mental capacity' which means professionals make all decisions about them and there is nothing they can do about it as they are ruled under the mental capacity act and they are so immensely ill and disabled they can't fight for their rights or as they are considered as 'lacking capacity' no one will listen to them (if they ate event able to speak) . The one case in the nursing home I'm referring to is an adult but still allowed no access to his mother.
Some cases also get sectioned under the MH act.
This is due to health professionals lack of understanding of the level of profound limitations very severe ME puts on every single basic function of patients who are very severe who get Ill from exertion even with carers doing the care for them.
This is why severe and very severe cases of ME urgently need to be included in research.
As otherwise the understanding of how ME affects patients who are the most severe will never be understood by professionals and as a result of these misunderstandings very very sick patients with ME will continue to be stripped of all their rights and hidden away under treatment orders in care homes and psychiatric units whilst there is nothing mentally wrong with them.
It's important peope know this is still happening right now in 2015 far too much.
But, I am hopeful that research will advance significantly over the next few years to give better diagnostic tests, that GET and CBT as 'treatments' will be scrapped and that neurology services will take on a more active role of managing ME patients.also hope that real medical treatments that actually help will become available through some of the promising lines of drug treatments research that are currently being pursued!!
So I think there's a lot of good reason to hope things will start to improve significantly in the foreseeable future 
That is truly shocking and horrendous, cant believe people can be treated like this x
UK reporting of the IOM report dailymail.co.uk/health/arti... from the same source that brought us fear of exercise from the PACE re-hash
How the media is reacting from Cort Johnson:
cortjohnson.org/blog/2015/0...
IOM got a shout out on NBC a doc said CBT / GET best treatment that fixes people just fine !
so obvious that something that gets bad with exercise the doc lied saying different than a committee report has just stated crystal clear what it is and what it does.
got a smile most good news Ive seen in a long time
