1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
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Brain Cells Making us Sick? The microglia connection in ME/CFS & Fibromyalgia
Simon McGrath looks at theories that microglia, the brain's immune cells, could trigger and perpetuate the symptoms of ME/CFS and fibromyalgia.
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POLL OPEN! Terminology, Definitions, and Criteria

Discussion in 'General ME/CFS Discussion' started by Dr.Patient, Jul 10, 2014.

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Please indicate if you agree or disagree with each of these 5 items, thank you!

  1. Agree with Item 1

    57.1%
  2. Disagree with Item 1

    28.6%
  3. Agree with Item 2

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  4. Disagree with Item 2

    71.4%
  5. Agree with Item 3

    57.1%
  6. Disagree with Item 3

    28.6%
  7. Agree with Item 4

    71.4%
  8. Disagree with Item 4

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  9. Agree with Item 5

    42.9%
  10. Disagree with Item 5

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Multiple votes are allowed.
  1. alex3619

    alex3619 Senior Member

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    I would like to add to this point. Cognitively I have had times when I was reasonably high functioning (though not close to what I should be), though for the last year and a half I have been in decline. Yet in the late 90s I was full mental zombie, and this has happened at other times briefly. This disease changes, so long time patients often understand most of what people are going through even if they are not there themselves at this point in time. The same goes for all the other symptoms.
    ahmo, SOC, Scarecrow and 1 other person like this.
  2. alex3619

    alex3619 Senior Member

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    On community, while this is primarily an ME and CFS community, lots of others are welcome. This includes other sick people, like those with MCS and fibro in particular, doctors, carers, researchers etc. So far as I am concerned even journalists and psychiatrists are welcome, despite the bad rep some of them have. That rep is really about specific individuals, not the professions, though do expect me to engage in fierce debate if any psychogenic psychiatrists turn up here.
    Valentijn likes this.
  3. Cheesus

    Cheesus Senior Member

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    Oh christ that is an unpleasant thought. Pretty sure I was meant to right 'bowl' :D
    SOC, TigerLilea and Valentijn like this.
  4. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    I actually said:
    As has been noted, we have large advocacy section with 32,169 posts.

    Sushi
    SOC and Valentijn like this.
  5. alex3619

    alex3619 Senior Member

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    One of the issues is not everyone is into advocacy. More particularly, some are too sick to handle it. They deserve a place to go that feels like home too, not just those who want to advocate. So PR serves many roles.
    SOC, AndyPandy, Nielk and 4 others like this.
  6. Gingergrrl

    Gingergrrl Senior Member

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    @Cheesus that actually made me laugh out loud and am still laughing... so your typo brought me some happiness today :lol:
    Cheesus and alex3619 like this.
  7. Gingergrrl

    Gingergrrl Senior Member

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    @alex3619 thank you for saying this. I am a social worker in my lifelong career before I got so ill and advocacy was a huge part of my daily life and something I really enjoyed and was good at. The first moment I saw an injustice I was leading the charge. But now I am too ill to advocate for CFS which also brings me a lot of guilt.
    AndyPandy, alex3619 and Sushi like this.
  8. Nielk

    Nielk

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    No one should ever feel guilty for what they can't do due to this disease. Sometimes, all I can do is lay in bed and just breathing takes all my energies.

    In addition, just raising awareness of what this disease actually is or helping another patient out here in the forum is acting as an advocate in my opinion.
    ahimsa, xchocoholic, Cheshire and 6 others like this.
  9. alex3619

    alex3619 Senior Member

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    I advocate now as much as I can. Its not enough, but it never will be. I had years when I could not have advocated for anything. That may happen again. We are all at different stages. There is no shame in this, the shame is for those who have deliberately ignored our disease or damaged research.
    ahimsa, xchocoholic, Mij and 4 others like this.
  10. SOC

    SOC Moderator and Senior Member

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    That pretty much describes it for daughter and I. :) Now WHY we have immune impairment is the critical question....
  11. Gingergrrl

    Gingergrrl Senior Member

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    @SOC I am looking over my notes and slightly misquoted him. He actually calls it, "Viral re-activation disease caused by immune impairment." It was similar to what I wrote (same meaning) but he used the word disease and I didn't want to mis-quote him! As to why this impairment occurs, he does not know but hopes that the research at OMI or elsewhere will soon find out.
    SOC likes this.
  12. taniaaust1

    taniaaust1 Senior Member

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    Many who have ME have abnormal regular EEGs. 2 out of 3 of mine have been abnormal with the common ME finding.
  13. taniaaust1

    taniaaust1 Senior Member

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    I do not consider that Im at all supporting a CFS person by implying they have the same illness as me and hence to me that would mean their condition is a life threatening one (which I view ME is) and they'd best not share drinks with others, take care who they are kissing in case its transmitted etc etc.

    I would not also be supporting a "CFS" person if Im telling them to "avoid GET" (when they dont even get post exertional symptoms!! so in that case maybe GET could even help).

    I would not be supporting a CFS by implying they have ME as it could mean they have another illness which may be being missed. The best I can support a CFS person is to tell them to keep seeking the answers out to their illness!

    I personally think it would be very wrong to place ME stuff onto another who has CFS and push onto them to avoid all the typical things which ME people need to be careful about.
    xchocoholic likes this.
  14. taniaaust1

    taniaaust1 Senior Member

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    I see it as no different to putting a lot of fatigue patients in with a group of MS patients and telling them all they should see themselves with the same illness (this is exactly what Dr Patient seems to want).

    I think most in this website respect that not all of us are the same (and that doesnt really matter as long as we respect each other).
    Last edited: Jul 18, 2014
    xchocoholic, Cheshire and Valentijn like this.
  15. taniaaust1

    taniaaust1 Senior Member

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    The amount of letters after a drs name is meaningless as it doesnt show at all how much they know about ME and CFS (seeing it isnt even taught about usually to doctors).
  16. TigerLilea

    TigerLilea Senior Member

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    I have CFS and I have PEM. Always have for these past 23 years since getting CFS after a really bad tooth infection and being put on a massive dose of penicillin.
    Gingergrrl and rosie26 like this.
  17. Dr.Patient

    Dr.Patient There is no kinship like the one we share!

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    Just found this discrepancy on the ICC criteria and the ICC primer regarding mild, moderate, severe, and very severe. The PRIMER describes them more accurately, not the criteria. Mild being some reduction in activities, moderate is at least 50% reduction, severe is homebound, and very severe is bedbound.
  18. SOC

    SOC Moderator and Senior Member

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    Can you explain to us non-UK folks what this means? What is a 'Champion' for the NHS? How does one get that appointment?
  19. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    @Cheesus, I don't know when I last laughed so loud or long. :eek: :rofl:

    P. S. I think you meant to write 'bowl' :p
    P.P.S. You do realize you have ruined A Visit from St. Nicolas for me.
  20. Cheesus

    Cheesus Senior Member

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    I need to learn to read what I have written :rolleyes: Who knows how many Christmases I have ruined.

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