The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
Discuss the article on the Forums.

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

Discussion in 'Institute of Medicine (IOM) Government Contract' started by CBS, Feb 10, 2015.

  1. CBS

    CBS Senior Member

    Messages:
    1,502
    Likes:
    845
    "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.?
     
    Izola, NK17, Simon and 1 other person like this.
  2. ahmo

    ahmo Senior Member

    Messages:
    4,318
    Likes:
    6,424
    Northcoast NSW, Australia
    Interesting...I no longer have #3, since my B12 levels remedied my insomnia. Same w/ 4b.
     
    Izola, MeSci and justy like this.
  3. CBS

    CBS Senior Member

    Messages:
    1,502
    Likes:
    845
    alkt likes this.
  4. Gingergrrl

    Gingergrrl Senior Member

    Messages:
    8,927
    Likes:
    22,058
    USA
    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.
     
    alkt, Izola, Debbie23 and 5 others like this.
  5. minkeygirl

    minkeygirl But I Look So Good.

    Messages:
    4,678
    Likes:
    4,639
    Left Coast
    From Wikipedia: Seid or Seiðr, an Old Norse term for a type of sorcery or witchcraft.... Enough seid o said!
     
    JaimeS, Izola, ahmo and 6 others like this.
  6. CBS

    CBS Senior Member

    Messages:
    1,502
    Likes:
    845
    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."
     
    alkt, Izola, SpecialK82 and 8 others like this.
  7. Gingergrrl

    Gingergrrl Senior Member

    Messages:
    8,927
    Likes:
    22,058
    USA
    @CBS I was wondering this too as my HR and BP do not regulate in my sleep without medications to assist this process.
     
    Izola, CBS and CantThink like this.
  8. justy

    justy Senior Member

    Messages:
    5,128
    Likes:
    11,052
    U.K
    It's Bullshit. I'm not happy.
     
    Izola, ahmo, Tammy and 17 others like this.
  9. Wally

    Wally Senior Member

    Messages:
    595
    Likes:
    1,318
    Some interesting translations of phrases where the word "SEID" is used.
    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.

    [​IMG]

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


     
    Last edited: Feb 11, 2015
    alkt, Izola, SilverbladeTE and 7 others like this.
  10. CBS

    CBS Senior Member

    Messages:
    1,502
    Likes:
    845
    I do appreciate the succinctness of your response.
     
    alkt, Izola, ahmo and 7 others like this.
  11. justy

    justy Senior Member

    Messages:
    5,128
    Likes:
    11,052
    U.K
    Well it's not like me to be so blunt online but there we go...
     
    Izola, SilverbladeTE, MEMum and 9 others like this.
  12. Min

    Min Guest

    Messages:
    1,386
    Likes:
    1,924
    UK
    Myalgic Encephalomyelitis is a perfectly good name, our neurological illness is not just intolerance to exertion, it has many other symptoms.

    As Justy says, 'SEID' is bullshit, it's also DIES backwards ; I am not happy either.
     
    alkt, Izola, SilverbladeTE and 11 others like this.
  13. Gingergrrl

    Gingergrrl Senior Member

    Messages:
    8,927
    Likes:
    22,058
    USA
    @justy you are the most kind hearted person here always giving everyone the benefit of the doubt, so your direct and honest response really made me think twice about this new proposal.
     
    alkt, Izola, peggy-sue and 7 others like this.
  14. Min

    Min Guest

    Messages:
    1,386
    Likes:
    1,924
    UK
  15. dannybex

    dannybex Senior Member

    Messages:
    3,152
    Likes:
    2,035
    Seattle
    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.
     
    alkt, Izola, SilverbladeTE and 11 others like this.
  16. Sidereal

    Sidereal Senior Member

    Messages:
    3,066
    Likes:
    16,940
    POTS and NMH are types of orthostatic intolerance. OI is a broad umbrella term.
     
    Izola, Roseblossom, Valentijn and 2 others like this.
  17. CantThink

    CantThink Senior Member

    Messages:
    775
    Likes:
    1,556
    England, UK
    I agree - systemic dysfunction (reminds me of body breakdown syndrome which someone propsed as a name).
     
    Last edited: Feb 10, 2015
  18. Ecoclimber

    Ecoclimber Senior Member

    Messages:
    980
    Likes:
    2,402
    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.
     
    Last edited: Feb 12, 2015
    alkt, Anne, Iquitos and 5 others like this.
  19. Gingergrrl

    Gingergrrl Senior Member

    Messages:
    8,927
    Likes:
    22,058
    USA
    @Sidereal Sorry I got confused and thank you for explaining that. I guess I still want it spelled out a little bit further so the word "autonomic dysfunction" is clearly there but I will take anything I can get LOL!
     
    Izola, WillowJ, ahimsa and 1 other person like this.
  20. CantThink

    CantThink Senior Member

    Messages:
    775
    Likes:
    1,556
    England, UK
    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).
     
    Izola, Wally, justy and 2 others like this.

See more popular forum discussions.

Share This Page