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"This is M.E." booklet by Action for ME - Feedback survey

Discussion in 'Advocacy Projects and Campaigns' started by Sly Saint, Jan 11, 2019.

  1. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    This post and the four following ones have been split from this thread:
    Action for M.E. hosts DWP spotlight training




    https://www.actionforme.org.uk/uploads/this-is-me-May-2018.pdf

    "
    Have you found this resource helpful? Is there a way we could improve it? We
    would love to hear your feedback to help make This is M.E. as useful as possible.
    You can share your feedback by:

    calling Action for M.E. on 0117 927 9551 or

    answering some short, simple questions online at
    www.surveymonkey.co.uk/r/ThisisMEfeedback"

    eta: waiting to see what others think but personally, given their [AfME] links to the DWP, (this does seem a bit like a PIP/ESA assessment), and I wouldn't want the info getting into 'the wrong hands'. I also disagree with a number of the 'explanations' of ME symptoms.

    eta: it also seems to contradict the other toolkit for employers and DWP.
     
    Last edited by a moderator: Jan 17, 2019
  2. Trish

    Trish Committee Member

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    Well I just went to all the trouble of reading that document and filling in the questionnaire, only to get the my submission rejected on some sort of 'timeout'.
     
    MEMarge, TiredSam, Snowflake and 3 others like this.
  3. ladycatlover

    ladycatlover Moderator Staff Member

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    Might be worth noting the questions and sending an email to yourself with your replies on it, then just copy and paste. Though having a timeout for ME patients is really bad. :mad: Most aren't fast at answering, due to brain fog. Might be worth phoning and complaining? I'll try and have a look at it later if energy permits - just had a shower so need some time to recuperate before engaging brain properly! :slugish: (at least I can't smell myself now! :eek:)
     
  4. Snowflake

    Snowflake Established Member (Voting Rights)

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    On no! Sorry to hear that Trish. It’s helpful to know that this happened to you though so thanks for letting us know (if I manage to find the energy and patience to complete this questionnaire I will make sure to keep a separate copy of my answers and suggest others do the same).

    Edit: cross posted with @ladycatlover
     
  5. TiredSam

    TiredSam Moderator Staff Member

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    Maybe they should practise what they preach and make a small accomodation to support PwME by changing the timeout setting.
     
  6. Trish

    Trish Committee Member

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    What do you think of this:

    I'm not thinking too well today - used up my brain cells writing my marathon letter to AfME yesterday. But I wanted to bump this thread. AfME is producing so much terrible stuff, most if not all of it coming from Hazel O'Dowd's North Bristol clinic. She is a Clinical Psychologist. I put a short bit at the end of my letter suggesting AfME cut their ties with HOD and that clinic. I think it's worth pushing harder on this.

    Here's my immediate response to this:
    1.
    No. A baseline relates to the cumulative effect of all the activities undertaken in a day. It seems to me idiotic to try to find a baseline for each individual activity because it depends on what else is done that day.

    2.
    No - that's GET. We know where that gets us. Is this a hint at the 'desensitisation' model, or the 'deconditioning' model, or the 'fear avoidance' model. Whatever it is, it's wrong.
     
  7. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

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    Not only that - in a fluctuating condition your "baseline" can vary day by day. Your "baseline" can be affected by the light, heat, noise, smell, hormones, food (for those with issues), minor bugs.....

    Given, for some of us, PEM can take 3 days to show up baseline not only needs to take account of every activity (including listening to music and watching TV for many of us) throughout the day, but also every activity throughout the last three days. This assumes the last 3-4 days have been PEM free. Otherwise you end up in cumulative PEM.

    I can't see there is any way they don't know this.
     
  8. Cinders66

    Cinders66 Senior Member (Voting Rights)

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    You’re right on baseline bit but I don’t think the rest of that paragraph is too bad, it dies reflect very low levels of toleration. There is diversity of paths with some able to eek themselves up, some just feeling better and others stuck. AFME aren’t alone in this type of rhetoric, it’s there in mea too. I haven’t read the whole booklet but I think that small bit is fair enough. Baselines or platforms can also fall as Me Can become like a tightening noose though, that needs to be reflected too and is under reflected often. My concern regarding AFME Is they often seem a companion to the Mainstream approach and they work with people they don’t hav to, eg why have alistair miller as advisor previously....
     
  9. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

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    You are of course right about the diversity. However -

    Some people can push a bit and seem to improve a bit in the early days. Then they push too far or get a flu and then it's downhill with little to no time off for good behaviour. We have no research that tells us how many (if any) continue to improve till the reach a sustainable plateau, or how many actually end up being very ill indeed. We certainly can't tell by original diagnosis as the criteria are such a mess.

    So my question, as much to myself as others, is this- given we have no way of telling who might improve significantly and who might deteriorate significantly, is it ethical to play a game of risk with these people's lives?

    If a drug company had a drug that could severely impair in the long term, or significantly improve things would doctors be allowed to prescribe with no idea which group their patient will fall in to?

    My feeling is no. This is not ethical. Safety should come first and, at the least, patients should be given the full picture not just someone's pet theory before making a choice.

    It is also true the MEA are guilty of this, though to a much lesser extent, I feel.
     
  10. rvallee

    rvallee Senior Member (Voting Rights)

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    Why is there even discussion of a "baseline level" in a wildly fluctuating disease? It does not describe anything resembling my experience. I sometimes go from a 3/10 to a 1/10 in a few seconds, which can last for days hours or days, sometimes weeks. Doing the least you can do is not a baseline, it's not even sustainable when you get little to no support. Sometimes I can't do a single during the day, sometimes I can do a few chores and go to the grocery. There is no baseline, only a floor of total inactivity.

    This is a typical description in most chronic diseases where there is some stability of symptoms but ME is just different on this.

    Also F the "boom and bust" cycle, it's a deceitful attempt to pretend to take PEM into account while giving it an alternative explanation as a wave of hand. There is no boom. Taking a shower is not a boom of activity! We can't progress when the basic descriptions of this disease being discussed are imaginary, often deceitfully so.
     
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  11. Snowflake

    Snowflake Established Member (Voting Rights)

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    I agree. The terms "baseline" and "boom and bust" are inappropriate and need to be abandoned in my opinion. Unfortunately the use of these terms is rather widespread! Perhaps we should be campaigning against their use and suggesting better ways to describe pacing and our lived experience of this condition?
     
    Hutan, MEMarge, obeat and 5 others like this.
  12. Unable

    Unable Senior Member (Voting Rights)

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    Bust is less of a problem word than boom.

    Boom implies excess by normal standards, and that is the problem. We don’t “boom”. We might gently live a little more than usual, but that’s hardly a “boom”!

    Bust certainly happens to me though. Often a “bust” period can seem to come out if the blue, stopping me in my tracks. For those who are severe, they are surely “bust” all the time.

    And as others have said “baseline” is a bit of a difficult concept in a variable illness.
     
  13. Daisybell

    Daisybell Moderator Staff Member

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    I don’t have a baseline, I just have a limit that I need to not exceed. That limit varies from day to day, week to week. It doesn’t seem to depend on how much or how little I have done in the preceding days or weeks - unless I have really overdone it, in which case my upper limit is significantly reduced for a period of days.
    Sticking below my upper limit doesn’t extend it over time. In fact, my upper limit is slowly decreasing.
     
  14. ladycatlover

    ladycatlover Moderator Staff Member

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    Well I'm heading for a "Boom and Bust" day today... I'm planning to have a shower! :rolleyes: Here at the caravan we have a shower cubicle with nice low access, and I have a shower stool. Afterwards I'll wrap in towels and sit back in bed while doing the face creaming thing then drag a comb through my hair while watching some dross daytime TV.

    Might get some clothes on an hour or so later, or if not up to that just drag on some clean night clothes if I can find some. OH is making me second coffee of the day to give me the oomph to make a start.

    We've been here since just before Christmas, and the furthest I've been from the caravan is once down the new steps to back door to make sure I could manage them (very shallow and longer than normal steps) and about 3 yards to edge of deck at front to take photos on a couple of days. So basically caravan-bound. (at least it makes a change from house-bound! ;))

    They don't give you much space for that, do they? :rofl: Or should I just put "everything"?

    I'm thankful that I'm at least able to shower myself, but tooth cleaning has gone out the window. :oops: Do manage most mornings, but can't remember the last time did an evening clean - no wonder I'm having probs with teeth, very grateful for a wonderful kind and understanding dentist. :)

    So I find most of their questions in the booklet to be fairly meaningless to me. Basically I'm pretty OK so long as I do absolutely nothing useful. But if I try to do anything meaningful (like unpacking my suitcase, which I'm basically living out of) or helping prepare food or go for a drive to village for shopping or just for fun (though the good ice cream shop is closed this month) I'll be flattened for days after.

    I won't be showering again for at least 3 days, and often it's even longer, particularly if I've had to go out for any reason.

    Oh, and I object to the word fatigue - what I have is fast fatigability, though that is followed by fatigue it just doesn't seem the right word.

    Plus I'm not sure I'd want to give much of the information that they ask for to the majority of professionals I deal with! And I'd certainly not use it for the so-called professionals who conduct DWP Assessments. Basically I think it's a pretty pointless exercise for other than mostly mildly affected patients.
     
  15. Trish

    Trish Committee Member

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    I just re-read the document and tried the survey again. It didn't time me out this time, but I wonder if they will take any notice. It says on the document that the revision will be done before the end of 2018, so I may be too late.
     
  16. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    not surprised; keeping info that affects patients up to date does not appear to be a priority.
     
  17. obeat

    obeat Senior Member (Voting Rights)

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    I do think we need to get rid of boom and bust ( Barts expression). I always use " safe limits" . I recovered well in the first two years and now I'm severe and my " safe limits" are shrinking. There have been no properly conducted longitudinal studies, because of course we all get better with GET.
    DR Paul Cheney gave a talk in ?2000 about patterns but I no longer have it.
     
  18. DigitalDrifter

    DigitalDrifter Established Member (Voting Rights)

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    I disagree. I would say the main symptom is an intolerance of exercise and exertion. There's no mention of damage or permanent worsening and there's a focus on stress which could lead some to believe that the condition is psychological.
     
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  19. Webdog

    Webdog Senior Member (Voting Rights)

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    It's 2019. How can AfME say the immune system is only "possibly" involved in ME? :banghead:
     
  20. Little Bluestem

    Little Bluestem Senior Member (Voting Rights)

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    I prefer the word 'exhaustion'. If I say anything, I say that I have low energy production and exhaust quickly.
     
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