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Will S.E.I.D. be accepted as (be proven to be) valid?

CBS

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"Systemic Exertion Intolerance Disease" or S.E.I.D. Sounds a lot better than CFS and perhaps better than ME/CFS if you insist on including the CFS bit. But can a committee (granted, one with several clinicians familiar with ME patients) simply describe a clinical entity? Wasn't that a significant part of the issue with CFS (and part of the resistance to ME)?

We now have yet another set of diagnostic criteria. And yes, this criteria places PEM front and center.

I do hope that there are plans to validate this new diagnostic criteria, if for no other reasons than to broaden acceptance but most importantly, to ensure that it is actually identifying the "right" group of patients (talk about a loaded term) and excluding the "wrong" patients (e.g. patients with a primary depression issue that have physical symptoms resulting from their depression).

S.E.I.D.

Self-reported -
1) Six months of profound, unexplained fatigue and
2) post-exertional malaise and
3) unrefreshing sleep and

4a) cognitive problems or
4b) “orthostatic intolerance”

Would your doc be willing/able to diagnose S.E.I.D.?
 

Gingergrrl

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I wish instead of "orthostatic intolerance" (which I am thrilled is included, don't get me wrong) they would have broadened it to include all types of profound autonomic issues including POTS, NMH, and overall inability of the body to maintain HR, BP, blood volume, etc, etc.

I also wish there had been viral/immune system and metabolic/mitochondria component so it is clear it is not just someone is "intolerant" of going to the gym versus someone cannot breath when they walk from the bedroom to the bathroom.
 

CBS

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How do you classify severe ME patients for whom essential metabolic functions are PEM inducing? Not really sure that "exertion intolerance" captures it as digestion and thermal regulation (processes that occur in your sleep if you are healthy) are generally not thought of as "exertion."
 

Gingergrrl

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How do you classify severe ME patients for whom essential metabolic functions are PEM inducing? Not really sure that "exertion intolerance" captures it as digestion and thermal regulation (processes that occur in your sleep if you are healthy) are generally not thought of as "exertion."
@CBS I was wondering this too as my HR and BP do not regulate in my sleep without medications to assist this process.
 

Wally

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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.


 
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dannybex

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As someone posted on Facebook (paraphrasing): "...it's not all about exertion and intolerance to exertion, we can be calm and resting and suffer from neurological, immune, endocrine, CNS, ANS, metabolic and energy transport dysfunction, heart problems…"

The name is laughable, and those involved should be ashamed of themselves.
 

Sidereal

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I wish instead of "orthostatic intolerance" (which I am thrilled is included, don't get me wrong) they would have broadened it to include all types of profound autonomic issues including POTS, NMH, and overall inability of the body to maintain HR, BP, blood volume, etc, etc.

I also wish there had been viral/immune system and metabolic/mitochondria component so it is clear it is not just someone is "intolerant" of going to the gym versus someone cannot breath when they walk from the bedroom to the bathroom.
POTS and NMH are types of orthostatic intolerance. OI is a broad umbrella term.
 

CantThink

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Not really sure that "exertion intolerance" captures it as digestion and thermal regulation (processes that occur in your sleep if you are healthy) are generally not thought of as "exertion."
I agree - systemic dysfunction (reminds me of body breakdown syndrome which someone propsed as a name).
 
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Ecoclimber

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I am concern that pain, IBS, and other neuro-cognitive issues is not mentioned as a condition. I am also concern about the P2P report. Will there be an incongruence between the two reports given the hostility displayed by the NIH toward this patient community and a compromise made since we know under the FOIA, there is quite a bit of resistance to legitimize this illness as a biomedical disease?

Is the P2P end around a HHS strategy to the IOM report? Will the NIH, CDC implement the recommendations from the IOM on their websites?

Pluses to take away today:

For the first time a internationally well 'respected' institute has respected that our illness is indeed a disease and not a psychiatric, psycho-somatic or somization disorder.

Recognizing the fact that the ME/CFS patient population has been mistreated and dismissed by the medical profession especially those practitioners who are suppose to help us violating the medical ethics of "Do No Harm."

Medical and disability benefits will be coded as a medical disease not psychological

Enormous and positive Press coverage by all of the major news/medical outlets

Recognizing the CBT and GET are deleterious to our health and therefore should not be considered as a primary treatment option

Recognizing PEM

Medical organizations and societies from other countries must sit up and take notice. Since they recieve an enormous amount of founding by the NIH, they are required to recognize this illness is really a disease.

More importantly it validates our illness as a biomedical disease!

More importantly, it will make it easier to raise both private and public funds for research since it is now classified as a complex biomedical disease.

Is it perfect, no and can and must be improved upon. The next and most important issue is the physicians toolkit. This will be the caveat for todays headlines. What will be the treatment guidlines? Psychosomatic treatment for a biomedical disease? I hope not but we got good foundation to build on.
 
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CantThink

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Well it's not like me to be so blunt online but there we go...
I thought that when I read your response. :hug:

I feel that, regarding the name, it is a slap in the face. It could have been worse (bodily distress), but at the same time for those of us who were diagnosed with and used M.E. I really can see no benefit to the emergence and adoption of this new name: S.E.I.D..

I've never used CFS, as I was not diagnosed with it, and (weirdly considering I'm in the UK) none of the various doctors I've seen have ever used CFS when referring to the disease I am suffering from. They have always used M.E. and I was okay with that. I still am.

As this disease progresses, the malaise and exertion issue are (to my mind) a small piece of the puzzle and a small part of my experience. There is so much more to it, as others have a expressed (particularly the seizures, autonomic dysfunction with HR/BP and syncope, plus gastroparesis, infections/immune dysfunction, allergies/intolerances and other factors).