1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
New Exercise Study Brings Both Illumination and Questions
Simon McGrath looks at new objective evidence of abnormal response to exercise in ME/CFS patients, and the questions that researchers are still trying to answer ...
Discuss the article on the Forums.

ME/CFS Research Newcastle UK - Team Newton

Discussion in 'General ME/CFS News' started by Firestormm, Sep 26, 2013.

  1. maryb

    maryb iherb code TAK122

    Messages:
    2,740
    Likes:
    1,765
    UK
    @Firestormm
    I just read some of #79
    this really peed me off..........

    'Sounds exotic but 3 days involving 2 nights on planes - will mean we experience some of what ME sufferers do ! '
    all I can say is no no no no no and NO

    when will well meaning people really understand that is not how we feel.FGS
    Valentijn and peggy-sue like this.
  2. Firestormm

    Firestormm Guest

    Messages:
    5,824
    Likes:
    5,965
    Cornwall England
    I remember an interview for a magazine I did once. Disabled magazine it was. Anyway, I was searching for something to compare the daily struggle against fatigue to, and 'international jet-lag' was what I came up with. Of course it's a daily fight, and the levels vary: but if you have ever traveled internationally long-haul and felt that jet-lag suddenly kick-in, I think as a healthy person it does give some idea: mental and physical.

    But if you don't agree. Not a lot I can do about it :)
  3. maryb

    maryb iherb code TAK122

    Messages:
    2,740
    Likes:
    1,765
    UK
    @Firestormm

    no I don't agree - I've had jet-lag from long haul flights many a time when I was well, yes I felt like shit..

    It doesn't compare in any way shape or form to the illness I have now - never mind the fatigue - sweats, insomnia, throat and ear pain, head pressure so severe its a nightmare lying down, stomach ache, sickness, - that's just yesterday.......I say again FGS
    SOC likes this.
  4. peggy-sue

    peggy-sue

    Messages:
    2,494
    Likes:
    2,871
    Scotland
    I've wondered if altitude sickness might be a vague comparison.

    Finding anything quite like ME is seriously difficult.
    MeSci likes this.
  5. MeSci

    MeSci ME/CFS since 1995; activity level 6

    Messages:
    3,241
    Likes:
    3,639
    Cornwall, UK
    Is fatigue your only symptom? o_O
  6. SOC

    SOC Moderator and Senior Member

    Messages:
    5,282
    Likes:
    6,234
    USA
    Pfft... I've had altitude sickness and ME is nothing like it. I've lived at altitude (7000 ft), and I've climbed a number of 14,000 ft peaks. I've seen a lot of people with altitude sickness. Granted, that's not like altitude sickness from climbing, say, the Himalayas, but how many people in the world can relate to that?

    I agree, finding anything that healthy people can compare to is seriously difficult. The best I've been able to come up with, and it's weak, is to ask them to imagine the worst flu they ever had, add mononucleosis (glandular fever) on top of it and then think about feeling like that every day for years with no hope of recovery. At least it starts to capture both the physical, emotional, and social misery of this damned disease. Of course then their brains overload, some switch flips to block the horrible thought because it's too awful to deal with, and they go on with their merry lives blocking out (most of the time ;)) the misery PWME live with every day.

    eta: When a friend or relative moans about being "sent to bed with a horrific cold", or jet lag, or whatever, I really have to fight not to roll my eyes and think, "Whadda wimp." ;)
    Last edited: Mar 22, 2014
    aimossy, Valentijn and maryb like this.
  7. peggy-sue

    peggy-sue

    Messages:
    2,494
    Likes:
    2,871
    Scotland
    Different folk respond differently to altitude - some folk can cope, others can't.

    I think the bottom line is there ISN'T anything that can compare.
    maryb likes this.
  8. Firestormm

    Firestormm Guest

    Messages:
    5,824
    Likes:
    5,965
    Cornwall England
    No. I said I was trying to find something to compare the exhaustion to!

    @peggy-sue to the totality that is ME that is very true. There may not be anything to compare.

    I remember when the MS Society did a whole campaign of video's trying to allow healthy people to experience what it was like to feel 'some' (i.e. the same 'some' as employed by Newcastle above) of the symptoms a person with MS might feel.

    They did things like, filling wellie-boots with sand I think, and having someone walk to the post-box in them: to experience the difficulties of movement. All the video's are on YouTube or were. It was a very successful campaign.

  9. Firestormm

    Firestormm Guest

    Messages:
    5,824
    Likes:
    5,965
    Cornwall England
    And how about this one:



    Have a good bloody moan about that you lot.
    aimossy and peggy-sue like this.
  10. peggy-sue

    peggy-sue

    Messages:
    2,494
    Likes:
    2,871
    Scotland
    The campaign the MS society did with the poster of a woman's back, with the spine replaced with a zipper, half-undone, is one that is ingrained in my memory as a powerful message.

    However, I don't think that sort of thing would have any impact nowadays. Everybody is exposed to shocking images everywhere - and all just for advertising purposes.

    To shock, it has to stand out from the crowd.
  11. N.A.Wright

    N.A.Wright Guest

    Messages:
    106
    Likes:
    124
    If someone has an analogy for their experience of illness that is meaningful to them, then I don't see how that can reasonably be deprecated. None of us can go into another's mind to know what the other person actually feels and if we are to value the exerience of people with ME/CFS then we have to accept their description of their experience of an illness. If jet lag is what ME is like for someone, then surely that is just as valid as if they said it was like meningitis or malaria - of course jet lag happens to be something that more people can empathise with but that's a separate issue. There's no way to know how disabling or distressing one person finds jet lag compared to another, nor breaking a leg, or having a tooth drilled, or intestinal surgery. We each look to find references that are meaningful to us and hope others relate in some way - for patients to deny the validity of other patient's experience because the semantics don't fit would be an unhappy situation IMO.

    My basic reference if I need to explain it to someone, is that my base line is like when you've had influenza (proper, not a heavy cold) and then there's that in between stage after about 3 to 5 days after the worst fever, where you can stand up, you can think a bit, you can eat a bit, but everything still hurts, your head feels like it's full of cotton wool and there's a general sense you've been sandblasted. I'd also say (as far as I can remember having one) it's a bit like having a hang over, and bit like the feeling of having been on 50km hike a couple of days ago - or shifted 5 tonnes of top soil, and maybe of having been done over with a baseball bat (of course that's an exageration - I've never had that precise experience but I've been on the end of enough falling object and agressively intended impacts to guess at the likely out come). And at times I'd say'all of the above'. On the scale of things does that not match the level expected for 'having M.E' ? - Would I not qualify as an ME patient because my refrences are not terrible enough ?

    I thought Julia Newton's joke was just fine - I don't want there to be researchers who feel they have to constantly genuflect towards the misery of the illness they are looking into. As I see it, everbody gets to be a bit like us a bit of the time even if it is just wo/man flu or self inflicted alcohol toxicity or a bit of over work. Our 'tragedy' is that for us it's not a 'bit' or a bit of the time' - but our being precious about that tragedy doesn't help non patients relate to us, so permanent jet lag seems not a bad starting point when it come to explaining the crappiness of it all.
    Ruthie24 and peggy-sue like this.
  12. maryb

    maryb iherb code TAK122

    Messages:
    2,740
    Likes:
    1,765
    UK
    Absolutely....
    oh and I forgot dizziness and vertigo when I was listing just some of my symptoms over the past 24 hrs. Not having a go at you @Firestormm but people really should think before they write such crap.

    It just makes me think they're not really taking us seriously, would they compare jet lag to any other illness........no.
    minkeygirl likes this.
  13. peggy-sue

    peggy-sue

    Messages:
    2,494
    Likes:
    2,871
    Scotland
    I've never had jet lag, I don't travel much, certainly not by air and would never consider travelling far enough to get it.
    I've never had GF.
    I haven't been above 5,000 feet.
    None of these things really means much to me, apart from bad, proper 'flu.
  14. maryb

    maryb iherb code TAK122

    Messages:
    2,740
    Likes:
    1,765
    UK
    @N.A.Wright

    sorry but I'm not at a stage with being happy with anyone feeling they somehow can compare any feeling they have to having ME, especially someone in the medical profession in the UK who is supposedly taking us seriously.
    I don't want people joking (if it was a joke) about my illness, its too painful.

    Be serious about taking us seriously is my advice to anyone researching this illness. I'm not suggesting they, as you say, "feel they have to constantly genuflect towards the misery of the illness they are looking into" no just have a quiet respect for our suffering.
    We don't have the top docs in the US saying things like this.
    minkeygirl likes this.
  15. maryb

    maryb iherb code TAK122

    Messages:
    2,740
    Likes:
    1,765
    UK
    @Firestormm

    who's moaning??? or is that the same as expressing your opinion?
  16. minkeygirl

    minkeygirl Senior Member

    Messages:
    2,200
    Likes:
    1,393
    Left Coast
    No one, no matter what they say, can know what it's like to have ME, especially with those of us that are mostly housebound. To even imply that having jet lag or flying is close is incredibly insulting and minimizes just how catastrophic and crippling this disease is.

    I think that not even those who are higher functioning have no real clue as to what it is really like for those of us who are housebound.

    I don't think anyone can imagine what it's like to be so tired reaching for the remote that you can barely breath. Or have to get dressed in stages over the course of several hours to go out because there is no way to do it all at one time.

    People just don't think.
    peggy-sue likes this.
  17. aimossy

    aimossy Senior Member

    Messages:
    1,882
    Likes:
    2,277
    NZ
    Run a matharon,at altitude get low oxygen saturation
    Add huge lactic acid build up from that exercise...
    Add all feelings of serious hangover and toxic feelings with oversensitive nerves
    Add the flu NOT a cold and wear a lead weighted suit .
    Add 2 days at least of sleep deprivation
    I haven't anything for raw pain or sensitive nervous system or gut here.

    Now just get on with life, do everything normally and behave normally with all that happening...oh yeah if we can remember what it is that we should be doing. Ha Ha!
    People have no idea how tough and persevering people with ME become to carry on as best they can.
  18. Firestormm

    Firestormm Guest

    Messages:
    5,824
    Likes:
    5,965
    Cornwall England
  19. Firestormm

    Firestormm Guest

    Messages:
    5,824
    Likes:
    5,965
    Cornwall England
    Little Bluestem, MeSci, Simon and 2 others like this.
  20. peggy-sue

    peggy-sue

    Messages:
    2,494
    Likes:
    2,871
    Scotland
    Can't she sort of "loose" AfME on her way up here.... please?
    Shove them off the bus?;)

    We have no "specialist centres" here, and don't need GET and CBT shoved at us.

    The Scottish Government has been ace about ME so far, we've even got The Scottish Good Practice Guidelines..
    (or we did have until they were watered down by AfME "to be compatible" with NICE.)
    Valentijn and maryb like this.

See more popular forum discussions.

Share This Page