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

[alex3619]

In my experience pain is a variable symptom that can wax and wane and varies in intensity. I had pain at very high intensity for many years, but now a decade later I have much lower pain off and on, and long periods with almost no pain.

 

[Sidereal]

From the full report:

BOX 3-2 Suggestions for a New Name Received from Members of the Public

• Myalgic encephalomyelitis

• Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)

• Chronic fatigue and immune dysfunction syndrome

• Neuroendocrine immune dysfunction syndrome

• Activity-induced neuro-immune morbidity

• Autonomic nervous system dysfunction

• Autonomic nervous system immune mitochondrial dysfunction

• Body breakdown syndrome

• Brain dysfunction induced ME/CFS

• Brain stem infection

• Catastrophic multisystem dysfunction

• Chronic fatigue

• Chronic fatigue and immune dysfunction syndrome (CFIDS)

• Chronic fatigue syndrome

• Chronic immune abnormality

• Chronic immune deficiency

• Chronic influenza syndrome

• Chronic myalgic encephalopathy syndrome

• Complex energy collapse syndrome

• Complex energy drain syndrome

• cytokinitis

• Diffuse encephalomyelitic immune inflammatory syndrome

• Encephalomyelitic cytokine inflammatory cascade

• Encephalomyelitic cytokine syndrome

• Encephalomyelitic immune inflammatory cascade

• Encephalomyelitic immune syndrome

• Encephalomyelitis/chronic fatigue syndrome

• Energy collapse syndrome

• Epidemic neuro-myasthenia

• Immune dysfunction syndrome

• Immune neuro-endocrine syndrome

• Immunity disease

• Mitochondrial dysfunction syndrome

• Mitochondrial failure syndrome

• Mitochondrial immune dysfunction syndrome

• Multi symptom cognitive and energy challenge

• Multi system disease

• Multiple encephalomyelitis

• Multiple enervation disorder

• Multiple neuro-immune disorder

• Multi-systemic dysregulation

• Multi-systemic infectious disease syndrome (MSIDS)

• Myalgic encephalomyelitis fatigue syndrome

• Myalgic encephalomyopathy

• Nature killer cells syndrome (NKCS)

• Neural-endocrine exhaustive dysfunction

• Neurasthenia gravis

• Neuro-endocrine immune collapse syndrome

• Neuro-endocrine immune disease

• Neuro-endocrine immune dysfunction

• Neuro-endocrine immune dysfunction syndrome

• Neuro-immune disease

• Neuro-immune disorder

• Neuro-immune-endocrine muscular disease

• Neuro-immune inflammatory disease

• Neuro-immune microbe imbalance

• Neuro-immune spectrum disorder

• Neuro-myasthenia

• Nightingale’s disease

• Peterson syndrome

• Peterson’s disease

• Post-activity neuro-immune morbidity

• Post-polio syndrome (PPS)

• Ramsey’s syndrome

• Severe systematic collapse

• Sophia Mirza disease

• Vagal gliosis

• Vagal neuropathy

• Anything but CFS

"Anything but CFS" - LOL!

 

[alex3619]

But isn't exercise intolerance different from PEM, in that exercise intolerance means you are unable to exercise (can't carry out the task) but PEM is a delayed patophysiological response which means you might be able to climb the stairs but you'll be ill for days afterwards?

Yes, and I hope they address this in the report.

 

[L'engle]

I for one am happy to see 'the F word' go out the window. 'Systemic' and 'Intolerance' are words with fairly legitimate meanings. 'Fatigue', unless referring to army pants, is a vague term used to describe psychic weakness of one kind or another.

 

[Research 1st]

Pain is a core symptom of an inflamed CNS. Curiously, the IOM left this out as it allows too much focus and research on people with probable ME (organic CFS), who were healthy before autoimmunity attacked their brains in response to pathogens and zonked their brains into sleep mode when awake as just one effect of this.

Without doubt, It's good the psychobabble isn't a focus of the IOM, but instead it's in the P2P. . The P2P is the mother-in-law of Oxford CFS evidence based reasoning.

Basically, since we've been ill, all we have is Gov't time wasting exercises. ME>PVFS>CFS>SEID.
That's 1969 - 2015 = 46 years. Approximately the time for a Govt employer to be employed, awarded, then retire on a handsome golden hand shake, and the same time the poor patients never got to live their live before expiring from overwhelming disease, miserable, lonely and poor.

By the time we know the 'cause' of ME, all of the 1950's original baby cohorts will be deceased or too old to feature in 'research'. The accidental recipients of pathogens in the late 1980's who got the mysterious CFS are now aged 35-50 and older. As the average live expectancy is around 75, god knows what it is for very sick long term CFS. Less of course.

Mature aged patients of CFS diagnosis who endure decades of state propaganda, are the people who needed to be studied, the sickest with most secondary 'effects' (e.g arthritis). We could have done back in 1988 and before but the CDC know damn well what is inside the 'CFS' patients, hence it was rapidly created and utilized for 27 years and has just been given a face-lift to display in the showroom to eager customers.

I'm not buying the new update, and want to see the unfortunate marriage of mitochondria, prions and pathogens published in science journals and replicated by others in the future. Then we're talking specific disease process, not this silly CFS or SEID nonsense which is unspecific.

If the Mitochondrial matrix is attacked by an autoimmune process attacking a pathogen that shouldn't be somewhere, you will be very ill at rest (not just exertion). If you exert you will harm the mitochondria, and be annihilated due to then suffering an increase in immune symptoms/inflammation and depleted ATP to the point you can barely breathe to speak (what severe ME CFS sufferers report). This inflammatory response mimics what happens in relapse in other autoimmune diseases such as Lupus, when they over exert, but in ME, the biological mechanisms are obviously novel and not understood yet. Yet.

ME must be an autoimmune mitochondrial disease of some sort. Thus it would definitely involve pain, and likely involve neuroinflammation - what the SEID doesn't focus on.

For the IOM to call reduced CCC CFS + no pain + no inflammation a more appropriate version of ME/CFS (Via SEID), is disingenuous and scientifically false. However, owners of 'fatigue clinics' will love the SEID concept and have people lining up at the doors to get diagnosed with CFS that came out the closet. The physicians in private fatigue clinic practice, are mostly Americans. The IOM is American. The people on the panel helping to form SEID have their own fatigue clinics. Go figure.

A way to wake up from state induced CFS ME zombification, is to pray to God (as an atheist too) new methods of pathogen detection not requiring lumbar puncture or tissue extraction can be developed to demonstrate that ME is not associated to SEID, but a single cause agent.

The 'shoe' of future scientific disease research is still awaiting the correct ME 'foot' to slot into, even if a Govt allied Big Foot has kicked the shoe out the door, and closed it, it's still their laying in the snow awaiting an owner to revive it.

 

[Wally]

Here is my initial comment about the Report, which I posted on the thread titled "Will S.E.I.D. be accepted as (be proven to be) valid?" (See, http://forums.phoenixrising.me/inde...d-as-be-proven-to-be-valid.35439/#post-556466)

Some interesting translations of phrases where the word "SEID" is used.

ihr seid vielleicht ein Verein!
what a bunch you are!

ihr seid allesamt Betrüger
you're all cheats! you're cheats, all of you

seid ruhig, sonst schaff ich gleich mal Ordnung
be quiet or I'll come and sort you out

I do not consider myself a S.E.I.D. because it is just a recommended name by a small group of people (no matter how distinguished in their individual careers). But if I was a S.E.I.D. or feared I might be labeled as a S.E.I.D. I would not be quiet and roll over. I would be a noisy S.E.I.D. and continue to fight to be heard. I am most definitely not a cheater. I am ill with a real neurological, endocrine and immune illness that appears to be connected with a viral pathogen.

I am not yet convinced that this Report or the name S.E.I.D. will force/convince those controlling the purse strings to S.I.D.E. with patients (like me) and immediately and adequately fund the illness I have had for 24 years.

Show me the money and how my illness will be studied and then I will let you know how I feel about this Report.

 

[August59]

In my experience pain is a variable symptom that can wax and wane and varies in intensity. I had pain at very high intensity for many years, but now a decade later I have much lower pain off and on, and long periods with almost no pain.

My pain does wax and wane, but is always there. OI is the symptom that, in my instance, has been manageable throughout my sickness without medical intervention. I have had BP of 200/120 supine and have stood up and took 5 steps and physically dropped like a rock on numerous occasions over the last 9 years. When my pain gets worse, so does my OI, unless the need arises for pain medication at which point the OI mostly abates.

We're so weird!!

 

[Scarecrow]

But isn't exercise intolerance different from PEM, in that exercise intolerance means you are unable to exercise (can't carry out the task) but PEM is a delayed patophysiological response which means you might be able to climb the stairs but you'll be ill for days afterwards?

Yes, and I hope they address this in the report.

I think you may be disappointed. They emphasise the variability of PEM but don't clearly distinguish between it and exercise intolerance, from what I can see.

 

[halcyon]

Pain is a core symptom of an inflamed CNS. Curiously, the IOM left this out as it allows too much focus and research on people with probable ME (organic CFS), who were healthy before autoimmunity attacked their brains in response to pathogens and zonked their brains into sleep mode when awake as just one effect of this.

They did include pain on the key facts sheet. Not all patients have pain though, so I'm not sure it should have been included in the diagnostic criteria. Perhaps as an optional item? It seems like they were trying to move away from throwing the kitchen sink into the criteria and keep it as simple as possible.

 

[Sidereal]

Regarding ME, the report says:

In considering which name would be most appropriate, the committee turned first to ME—“myalgic encephalomyelitis” or “encephalopathy.” Historically, however, the diagnostic criteria for ME have required the presence of specific or different symptoms from those required by the diagnostic criteria for CFS; thus, a diagnosis of CFS is not equivalent to a diagnosis of ME. This term also fails to convey the full spectrum of this disorder. While the term “encephalopathy” suggests the presence of global brain dysfunction, a symptom supported by research, the term “encephalomyelitis” suggests brain inflammation, for which there is much less evidence at present. Similarly, the term “myalgia” refers to a symptom that is neither a distinguishing aspect of this illness nor a severe symptom in many patients with ME/CFS.

 

[charles shepherd]

I haven't yet had time to read this IOM report in any detail - so will confine my brief comments tonight to the proposal for a new name: systemic exercise intolerance disease/SEID.

CFS/chronic fatigue syndrome is an absolutely dreadful name for a serious and debilitating neurological illness. It is the equivalent of saying someone with dementia has a chronic forgetfullness syndrome. So CFS needs to be dumped in a medical dustbin as soon as possible.

But I'm not feeling very excited about what is being proposed today by the IOM.

If the international medical community now wants to put a thick red line through the name ME/myalgic encephalomyelitis (due to the probable pathological inaccuracy of the E in ME) I would suggest that we have another go at promoting the term ME/myalgic encephalopathy - which is consistent with the structural and functional neurological abnormalities that have been reported in the medical literature and cannot be seriosuly challenged.

If the docs won't accept ME in either format, I would far prefer a name new that emphasises the neurological and immunological components of ME/CFS - perhaps something along the lines of chronic neuroimmune dysfunction disease.

My gut feeling is that this IOM proposal is not going to gain sufficient support from either the international patient community, or the international medical community. SEID is not therefore the solution regarding nomenclature we need.

These are rapid personal opinions - I have not yet had time to discuss this report with MEA trustees.

 

[Valentijn]

But isn't exercise intolerance different from PEM, in that exercise intolerance means you are unable to exercise (can't carry out the task) but PEM is a delayed patophysiological response which means you might be able to climb the stairs but you'll be ill for days afterwards?

No, PEM is just a specific subtype of exercise intolerance. People with mitochondrial or other disorders featuring rhabdomyolysis can exercise to some extent, damage cells in the process, and discharge blood in their urine afterward.

 

[Mary]

@Anne - From the Medscape article someone linked above: (http://www.medscape.com/viewarticle/839532#vp_1)

"Dr Clayton, who has participated in previous IOM committees but did not have expertise in ME/CFS before joining this panel, said the evidence was particularly strong in three areas: The characteristic decrements seen after 2-day cardiopulmonary testing, clear and reproducible findings of orthostatic intolerance, and neuropsychiatric test data that show evidence of slowed processing. "This isn't just things that patients are concerned about. These are reproducible things you can find on testing."

"She added, "The level of response is much more than would be seen with deconditioning," with reference to the belief voiced by some clinicians that physical abnormalities in these patients are merely a result of their lack of activity.
Indeed, Dr Rowe noted, "That argument is untenable with people who have been physically active, some of them athletes, [before becoming ill]. The deconditioning argument is flawed in that respect."

They are finally acknowledging the 2-day exercise stress test findings! This I think would cover concerns about whether or not they are aware of delayed onset fatigue/crashing.

 

[Ember]

https://www.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).”

Jerrold Spinhirne's comments have been reposted by Patricia.

 

[SDSue]

It will be interesting (and telling?) to see if the late night hosts (Letterman, Kimmel, and/or Fallon) make jokes about this news.

 

[CBS]

@Anne - From the Medscape article someone linked above:

"Dr Clayton, who has participated in previous IOM committees but did not have expertise in ME/CFS before joining this panel, said the evidence was particularly strong in three areas: The characteristic decrements seen after 2-day cardiopulmonary testing, clear and reproducible findings of orthostatic intolerance, and neuropsychiatric test data that show evidence of slowed processing. "This isn't just things that patients are concerned about. These are reproducible things you can find on testing."

"She added, "The level of response is much more than would be seen with deconditioning," with reference to the belief voiced by some clinicians that physical abnormalities in these patients are merely a result of their lack of activity.
Indeed, Dr Rowe noted, "That argument is untenable with people who have been physically active, some of them athletes, [before becoming ill]. The deconditioning argument is flawed in that respect."

They are finally acknowledging the 2-day exercise stress test findings! This I think would cover concerns about whether or not they are aware of delayed onset fatigue/crashing.

I found it interesting that they did acknowledge the unique findings of the two-day test. It will be interesting to see how the CDC responds to this. That said, the proposed name "exertion intolerance" completely misses the boat while dropping the "post" from PEM.

 

[Gingergrrl]

I am about three pages behind on this thread (which I intend to read later) but wanted to make a comment.

My mom heard on the radio in the car on a major US station an announcement from Vanderbilt University that "CFS has now been proven to be a real physiological disease." She was driving to my house and told me as soon as she arrived.

She knows it is biological and this was not news to her BUT we felt if someone who did not already know were to hear the news, it could be extremely helpful. Most people only hear the first sentence of a news item so would tune out before "SEID" or other such nonsense would be explained. So the take home message is great IMO!

 

[August59]

They did include pain on the key facts sheet. Not all patients have pain though, so I'm not sure it should have been included in the diagnostic criteria. Perhaps as an optional item? It seems like were trying to move away from throwing the kitchen sink into the criteria and keep it as simple as possible.

Not all patients have OI either, but granted it's a little more common than severe pain

 

[snowathlete]

Here's the BMJ article. They did a bit of their own take on it, emphasizing depression and anxiety (surprise....)

The condition known as myalgic encephalitis (ME) or chronic fatigue syndrome (CFS) is a serious, chronic multisystem disease that can cause significant impairment and disability, an expert panel convened by the US Institute of Medicine has concluded in a new report.1 “In its most severe form, this disease can consume the lives of those whom it afflicts. It is ‘real,’” the committee wrote.

The institute commissioned the committee to develop evidence based diagnostic criteria for ME/CFS but not to investigate the causes, pathophysiology, pathogenesis, or treatment of the syndrome. The committee’s chair was Ellen Wright Clayton, a professor of pediatrics and a professor of law at Vanderbilt University in Nashville, Tennessee.

They are playing it down by saying it CAN be severe, and IN ITS MOST SEVERE FORM which carries the suggestion that only a minority of people are affected severely, while the majority...[Insert your own prejudice]

They then continue to label it a syndrome, when not quoting the report.

And as you already pointed out: they highlight depression and anxiety.

Hands up if you're surprised? No, I'm not being inconsiderate; I know most of you aren't well enough to lift your hand, it's just that I don't expect anyone will need to anyway.

 

[Snowdrop]

Whoa, a lot to take in.

I confess that I am in the SEID is not a useful name camp. I was amused by @justy response

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.

That said, it seemed premature to try for a rename. I suppose it is better than CFS though. And ultimately I see it as a placeholder name until we get further research which hopefully will be forthcoming. I think I'll stick with ME for my illness name.

I have only this thread to go by as to the IoM report. The comment that most pleased me was by @dancer

For me one of the positives was the passion in the IOM presenters voice (conveying a sense of being appalled at what patients have endured, lack of funding, stigma, etc.)

Just that acknowledgement from that committee member is heartening. A huge thank you to those on that committee that fought to have ME legitimised as real and physical. Hopefully others on the committee were educated by what they learned.

Now for what to do next. Do we suggest wikipedia update their info? Ask for, as an example, the Washington Post to correct their treatment info? Where do we start with how to use this information?