Release of the IOM report - live webcast-2/10/2015

[waiting]

"...not just psychological"

Yeah, I guess it can be taken in more than one way. I initially read it as: not "just psychological" -- as in, many considered it before to be "only psychological" -- not that it was physiological and psychological....?

 

[alex3619]

The Washington Post: "Chronic Fatigue Syndrome is real condition, not just psychological, panel says".

http://www.washingtonpost.com/news/...ot-a-psychological-illness-expert-panel-says/

Treatments can include drugs such as anti-depressants and sleeping pills; gentle exercise and psychological counseling; and lifestyle changes such as limiting stress, caffeine, nicotine and alcohol.

If you follow the link they are claiming CBT/GET and antidepressants. However this is not what the report is about, and is inaccurate reporting.

 

[Joss]

British Medical Journal: http://www.bmj.com/content/350/bmj.h775

US panel proposes new name and diagnostic criteria for chronic fatigue syndrome

 

[Sing]

If you follow the link they are claiming CBT/GET and antidepressants. However this is not what the report is about, and is inaccurate reporting.

I just wrote this in Kina's thread. The Washington Post is combining some facts from the IOM meeting along with what is up on the NIH website under the P2P report, which I believe is only the initial draft summary. That included everything but the kitchen sink for causes and treatments. I am upset too when news organizations mix up new data with old, discredited stuff just to tell a more complete story.

 

[alex3619]

British Medical Journal: http://www.bmj.com/content/350/bmj.h775

US panel proposes new name and diagnostic criteria for chronic fatigue syndrome

This one could cause waves. What, a UK journal reporting this?!!!!

Wonder what the SMC will say?

 

[Sean]

Recommendation 1: Physicians should diagnose myalgic encephalomyelitis/chronic fatigue syndrome if diagnostic criteria are met following an appropriate history, physical examination, and medical work-up. A new code should be assigned to this disorder in the International Classification of Diseases, Tenth Edition (ICD-10), that is not linked to “chronic fatigue” or “neurasthenia.”

 

[Sean]

Recommendation 2: The Department of Health and Human Services should develop a toolkit appropriate for screening and diagnosing patients with myalgic encephalomyelitis/chronic fatigue syndrome in a wide array of clinical settings that commonly encounter these pa- tients, including primary care practices, emergency departments, men- tal/behavioral health clinics, physical/occupational therapy units, and medical subspecialty services (e.g., rheumatology, infectious diseases, neurology).

 

[Sean]

Recommendation 3: A multidisciplinary group should reexamine the diagnostic criteria set forth in this report when firm evidence supports modification to improve the identification or care of affected individu- als. Such a group should consider, in no more than 5 years, whether modification of the criteria is necessary. Funding for this update effort should be provided by nonconflicted sources, such as the Agency for Healthcare Research and Quality, through its Evidence-based Practice Centers process, and foundations.

 

[Sean]

Recommendation 4: The committee recommends that this disorder be renamed “systemic exertion intolerance disease” (SEID). SEID should replace myalgic encephalomyelitis/chronic fatigue syndrome for patients who meet the criteria set forth in this report.

 

[justy]

systemic exertion intolerance - no thanks - sounds like something Gwyneth might have. An intolerance is not a real issue. People with food, drug intolerances are laughed at and told theey have psych disorders.

It's not a real thing anymore than CFS.

From biology online, a definition of intolerance:

Intolerance
Intolerance
Inability to withstand, sensitivity

I'm not sensitive to exertion, or unable to tolerate it. I have a neuroimmune disease, of that I am sure. It is the inability to fight off infections that has led to pneumonia twice in 6 years, and the terrible neurological symptoms that are so awful - not 'cognitive' problems but myoclonus, seizures, ptosis and palsy's, burning sensations, nerve damage, problems with swallowing, gut problems, multiple allergies the list goes on.

I can just see me explaining to someone who says 'so why are you in a wheelchair?'
'Er, umm, I have a sensitivity to exertion'

 

[RL_sparky]

http://well.blogs.nytimes.com/2015/02/10/chronic-fatigue-syndrome-gets-a-new-name/?_r=0

"Leonard Jason, a psychology professor at DePaul University in Chicago and an expert on the illness, predicted that patients would be reluctant to accept the new name.
“The committee has come up with a name without vetting it,” said Dr. Jason. “And they will basically get a tremendous amount of discontent and dissatisfaction right from the starting point, because the patients want something very different.”

 

[Sean]

Although there was sufficient evidence with which to carry out the first steps of its task, the committee was struck by the relative paucity of research on ME/CFS conducted to date. Remarkably little research fund- ing has been made available to study the etiology, pathophysiology, and effective treatment of this disease, especially given the number of people afflicted.

 

[jimells]

And another ridiculous picture...

Tense, nervous headache?

Naw, she just found out she's related to Sir Simon.

 

[alex3619]

The Oxford criteria are not reviewed, unless I missed it. This definition did not rate highly enough to be reviewed? What a surprise!

 

[Anne]

Can someone help me with this?

I need picture 18 (the Diagnostic Algorithm) as a separate file (so, a PP with only one page):
http://www.iom.edu/~/media/Files/Report Files/2015/MECFS/MECFS_Powerpoint.pdf

Could someone do that? If so, please email it to me at anne.ortegren (at) comhem.se

Thanks!

 

[Valentijn]

If the CDC decide to adopt this SEID definitition, do they then expect the rest of the world to fall in line ?

It will make it a lot harder for them to justify using Fukuda. And since so many researchers around the world did use the CDC definitions in the past, it seems reasonable that they'll use the new definition in a similar fashion.

 

[Antares in NYC]

Although there was sufficient evidence with which to carry out the first steps of its task, the committee was struck by the relative paucity of research on ME/CFS conducted to date. Remarkably little research funding has been made available to study the etiology, pathophysiology, and effective treatment of this disease, especially given the number of people afflicted.

THIS!!!
This cannot be emphasized enough!

 

[Sing]

On SEID

They had to come up with a name. There isn't a known cause, so they went with a moniker focused on the chief symptom. In addition they added "systemic". I feel this is helpful because it is obviously multi-systemic. And they put in "disease". This is an improvement over syndrome or disorder.

I have never liked CFS but I have also really disliked ME as it seems to indicate a narcissistic problem. While SEID isn't wonderful, I am darkly amused by how it spells DIES backward.

 

[Never Give Up]

Do a Google image search for SEID, it's most inappropriate [/

Hahahahahahahahahahahahahahahahahahahahahahahahahahahaha! That gave me a good laugh, thank you!

 

[Research 1st]

THE SEID is CFS re-branded with more stringent critera, as anyone aware of medico politics predicted would happen. Unfortunately the 'ME' doesn't get a look in.

What we didn't predict was the name 'disease', but that is not accurate for SEID. No biomarkers are used to prove there is a 'disease' behind SEID, thus the argument of mind Vs body will remain (unlike with HIV AIDS).

Dr Bateman, (the apparent 'twitter' cheerleader for IOM) did not sign the letter of the 50 or so ME experts who were prevented from directly helping to redefine ME, but as a FMS expert, Dr Bateman may greatly benefit from the SEID from here on, because SEID, shuns the core symptoms of ME, instead going for a much more 'wide spectrum' disorder of pain and fatigue that encompasses multiple pain and fatigue disorders physicians see in their clinics.

The 2 CORE signs of ME .

1) Brain inflammatory signs.
2) Muscle pain

are EXCLUDED from SEID .

Conversely increasing heterogenous cohorts through accepting practically anyone into the flock including FMS pains, is in. This won't help 'prove' a specific neuroinflammatory ME exists. It will do the exact opposite.

Take home message: SEID is simply elements of CCC CFS, + the name 'disease', to legitimize chronic unexplained fatigue states.

As mentioned by other people, acquired infection onset is NOT REQUIRED (exactly like Fukuda CFS).
Also immune suppression and other immune abnormalities found in ME, are NOT REQUIRED.

This is good news for Chronic Fatigue patients of unknown cause, but bad if you have a specific disease caused by novel agents, ranging from bacteria/viruses/HERV's/Xeno's. Why? Now even harder to prove, than if you had ME/CFS patients being tested for infection. Why? As with CFS, if and when these agents are detected in the future, you will get a mixed bag results in an SEID cohort, and not conclusive evidence any disease is linked to any novel pathogen.

Who benefits from that?

The patients? No.
The ME researchers? No. They won't get the funding, the funding will go to heterogenous SEID.

Precisely what ME advocates were suggesting would happen.

All in all, a great day if you want to study multiple cause chronic fatigue, not involving brain inflammation, and not involving muscle pain. (What Myalgic Encephalomyeltiis 1969 W.H.O is about).

IOM redefining CFS is 'good' in terms of physicians potentially killing less patients in the community, but it doesn't even begin to answer 'ME' at all.

It would appear the only option left now, is for ME researchers, to continue publishing their work under the title Myalgic Encephalomyeltis, as they have no other choice now. If they choose SEID, the heterogenous pooling of SEID patients, will reduce the numbers of specific infectious agents detected, (if a researchers hypothesis is infection X causes ME).

Again, who benefits from that?