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You + M.E. (International ME/CFS Registry) Website Live!

Discussion in 'General ME/CFS News' started by Emily Taylor, Dec 24, 2019.

  1. Emily Taylor

    Emily Taylor Senior Member (Voting Rights)

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    [​IMG]

    Registries are foundational in understanding, treating, and curing diseases. This approach is desperately needed in ME/CFS. That’s why we’re proud to have created one for ME/CFS that will be accessible to all.

    With the generous help of our partners and the community, we have built a data platform and symptom tracking mobile app that will help connect patients, healthy controls, clinicians, and scientific researchers across the world to help solve the mystery of this debilitating disease.

    In the coming weeks, the You + M.E. platform and accompanying mobile app will be launched to a testing group and shortly after will be available to all participants. In the meantime, check out the You + M.E. website to learn more about the Registry and let us know what you think at registry@solvecfs.org

    [​IMG]
    Support this effort to bring a global data repository for ME/CFS. Please make a gift today.

    Thank you,

    [​IMG]
    Sadie Whittaker, PhD
    Chief Scientific Officer
    Solve M.E.


    P.S. Make sure to check out the You + M.E. Impact Tool, designed to create a visual way to communicate the impact of ME/CFS.
     
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  2. Ravn

    Ravn Senior Member (Voting Rights)

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    Looking good!

    One question: If you had pre-registered, does that mean you have automatically joined the registry, or do you need to re-sign up on the website now?

    I tried the Impact Tool and almost stopped right at the first question because it asks about fatigue, the second question, too. That allergy to the f-word...

    The next questions are about PEM - much better - only the answers here will depend a lot on how well you're pacing and could give a falsely positive picture. There's also a ceiling effect with respect to recovery time, the longest possible option being 5+ days. A relevant question would be how much (or rather how little) you can do without triggering PEM though I admit I don't have any idea how that could be incorporated into the app.

    There's another ceiling effect with respect to how many things you miss out on in a month, 20+ being the highest option. 20 would mean having days in a month when you don't miss out on anything - if only!

    I realise there's a plus sign in 5+ and 20+ but those figures are just so much lower than my reality, they don't feel at all representative.

    However, I do like the app's focus on missing out on things. That's something most people should be able to relate to.
     
  3. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

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    Snap!
     
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  4. alktipping

    alktipping Senior Member (Voting Rights)

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    I do not own a mobile phone . I can get confused enough on the land line . I once spent 3 days phoning the wrong cab no . until my mum came over to see what number I was using .
     
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  5. Emily Taylor

    Emily Taylor Senior Member (Voting Rights)

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    Thanks so much for sharing that feedback! I'll pass it along to the research team and report back.

    There's also an "add detail" function that I think is not yet available on the beta version? Did you see that on your version? My understanding is that for every day you report using the basic app function, there's an "add detail" area to elaborate on symptoms and triggers if you have the energy. We heavily emphasized "low movement" as a key priority during the app's development. "Low movement" meaning the lowest possible amount of scrolling/swiping/tapping so that using the app is not physically demanding to use.

    I think that 5+/20+ may be part of the "low movement" compromise so that there is less scrolling overall.
     
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  6. Emily Taylor

    Emily Taylor Senior Member (Voting Rights)

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    Oh! Almost forgot -

    Here's a follow-up announcement from the research team:


    You might have heard by now that we’re readying the You + M.E. Registry for launch. Right now, a small group of users are gearing up to test the Registry platform and mobile app.

    [​IMG]


    So, what is a Registry anyway and why does it matter for ME/CFS?

    A Registry is an organized system that allows us to collect large amounts of uniform data from individuals with a specific disease. The resulting large dataset will better enable researchers to identify causes and treatments by:

    • Yielding a deeper understanding of the disease
    • Helping identify subtypes
    • Facilitating the engagement of pharmaceutical companies
    • Speeding up clinical trials and parsing through the most effective treatments
    • Helping people with ME/CFS track symptoms day-to-day, making it easier to share that information with healthcare providers and loved ones and communicate the impact of ME/CFS
    • Supporting connectivity and collaboration, making researchers, patients, and healthy controls partners in progress in the fight against ME/CFS
    You can learn more about You + M.E. here: http://go.solvecfs.org/e/192652/201...h=QB8fJZ8KDUHoEBSFNG7YIXqFRVVS5nTbS6m0GUNnCT4

    Thank you for your support as we build a big data revolution for ME/CFS!




    [​IMG]
    Sadie Whittaker, PhD
    Chief Scientific Officer

    Allison Ramiller, MPH
    Director of Research Programs
     
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  7. Ravn

    Ravn Senior Member (Voting Rights)

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    Thanks Emily. It's always nice to know that feedback doesn't just vaporise in Internet space somewhere ;):)
    We may have some lines crossed here. I think you may be talking about the actual app (not yet launched, and I'm not one of the early testers so haven't seen it), whereas I was talking about the Impact Tool on the website (https://youandmeregistry.com/m-e-impact-tool/).

    Also, I'm still not clear on the answer to this question:
     
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  8. Emily Taylor

    Emily Taylor Senior Member (Voting Rights)

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    Aaaah! My apologies for the misunderstanding. You are right - I was talking about the app. My mom and I were not beta testers on the impact tool, but we were beta testing the mobile app. We actually have a new version to review this week! If all goes well, we should be on-target for the full launch next month.

    The science team sent me this response to your pre-registration question:

    Pre-registering does not mean that you’ve automatically joined the Registry, but it does mean that we will be able to easily get in touch with you as soon as the Registry is ready to accept participants. Over the coming weeks, we are completing testing of the online data capture tools with a small group. Once we process feedback and make any needed tweaks, we’ll be reaching out to the community with the go-live date.
     
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  9. Louie41

    Louie41 Senior Member (Voting Rights)

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    I'm not sure if your objection is to the concept of a feeling of having utterly no energy---of being so exhausted you can barely sit upright---or to the use of the word "fatigue."

    I'm aware of the difficulties with the word "fatigue," but I sometimes wonder if we run the danger of rejecting what seems to be a universal feeling of lack or loss of energy at some time period. There is certainly research supporting the view that there is something wrong with the energy production system that we don't think is well described by "fatigue."

    Whether or not I like the word "fatigue," what it attempts to describe has been, for me, an overwhelming factor since day one 30 years ago.

    I wouldn't like to see us skew our understanding of our disease too off base because of language shortcomings. Let's see what the research tells us before we conclude what is or isn't an aspect of our condition. Maybe science will coin a new word that we can all agree is the perfect descriptor. :) I actually kind of liked Dauer. ;) So Germanic and mysterious.........:D
     
  10. Ravn

    Ravn Senior Member (Voting Rights)

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    Yay!:thumbup:
    The concept of complete lack of energy and utter exhaustion I'm all to familiar with, definitely not denying the impact of that. No, it's the way the word fatigue is commonly interpreted I'm allergic to, as in fatigue=tiredness. And all the minimising of our suffering that follows on from that.

    And I worry about the effect the all-pervasive overuse of the word fatigue is having on research. There are still far too many studies that primarily look at fatigue (as in non-specific bad tiredness). And that's not just the BPS crowd, unfortunately. It's become a self-reinforcing circle. The more the word fatigue is used, the more researchers unreflectingly look at ME through the lens of fatigue (and often only fatigue), the more they use the word fatigue, the more... and now it's become such a deeply ingrained self-evident "truth" that ME is primarily about fatigue that even those who know better keep talking about fatigue with all the other issues involved mentioned as an afterthought, if at all. That focus on fatigue hasn't brought us any real insights, it's time to refocus* and to do that we need to fade the word fatigue from everybody's consciousness by not using it so much (and here in this post I've used it how many times?:oops: ;)).

    *To take your example, there could be a refocussing on energy production problems, rather than on the downstream effects of them (fatigue). Like in mitochondrial diseases where the research focus is typically on problems with mitochondrial function and energy production (which doesn't mean anybody doubts for a minute that patients suffer significant fatigue).
     
  11. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    Owl's Head Solutions

    Client
    The Solve ME/CFS Initiative

    Project
    You + M. E. Registry Website

    https://www.owlsheadsolutions.com/casestudy/you-m-e-registry-website/
     
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  12. Barry

    Barry Senior Member (Voting Rights)

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    I've not looked at this at all, so bear that in mind re my comment here.

    I agree the word 'fatigue' is much used and abused when it comes to ME/CFS. But if you were to ignore all the rhetoric around that word, then there is no doubt that fatigue is a component - amongst many components - that all sum to make ME/CFS the misery it is for so many.

    Any investigation into a better understanding of ME/CFS that deliberately avoided the word 'fatigue', for misguided political correctness, would be a complete waste of time surely. My wife - the pwME - speaks of tiredness and fatigue etc, they are not forbidden words in her descriptions of how she feels. But of course they are by no means the only words - when she is too screwed to use any words much at all then it goes way beyond fatigue and tiredness. But they still have their place for her, and to exclude such words would seem to me as unscientific as using/abusing those words. The important thing is that symptoms like fatigue are investigated with complete impartiality and without bias, so that fatigue can be better weighted amongst other symptoms - that would not be possible if the word were avoided.
     
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  13. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

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    I see what you mean @Barry and while I don't deny that many ME patients do feel that "fatigue" is a component of the condition, it the THE component that has had the most focus over the last few decades and is one of the driving forces behind "lumping" conditions together and the development of MUS and IAPT. Even though there has been no attempt to define and differentiate what "fatigue" means to differentiate pwME.

    I too used phrases, like - knackered, wiped out, floored, exhausted and so on to my husband. It wasn't until we were in an appointment together and he suddenly agreed with the consultant that I was tired a lot, I realized he was taking me at my word and didn't actually understand the nuances of how I was feeling. Indeed, how could he fully understand when a) he hadn't experienced it and b) I hadn't thought to actually explain.

    This may not be relevant to your wife @Barry, but I will say I know a number of people who have ME who will use the words fatigue or tired in a formal setting as well as casually at home because they do not understand the implications of it. They know a little bit about ME politics and have neither the energy nor inclination to learn more. While very frustrated at the neglect of a wide range of physical symptoms and a lack of biomedical research they are often not aware that the focus on "fatigue" has been used to justify this neglect.

    I appreciate you haven't looked at all this @Barry & what I have said may not be in the slightest bit relevant to you and your missus. This post is purely based on my own experience.
     
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  14. Barry

    Barry Senior Member (Voting Rights)

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    Yes, perfectly normal sensible words get hijacked by those with agendas who misuse them to promote their nonsensical arguments.
     
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  15. Ravn

    Ravn Senior Member (Voting Rights)

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    You nailed it @Barry. The word fatigue has been hijacked and is being used against us, often innocently through ignorance, but sometimes on purpose. The singular focus on 'fatigue' in ME for the last few decades has swung the pendulum much too far in the direction of ME=fatigue that we need to swing it strongly the other way, away from fatigue, just to get a bit of balance again.

    Nobody denies that pwME experience fatigue, exhaustion, feeling wiped out or knackered or whatever you want to call it. But people with any number of other conditions use the exact same words, and so do healthy people with non-pathological types of fatigue. Which makes the word 'fatigue' meaningless for our purposes.

    We don't know - and cannot know until we have objective 'fatigue' markers - if or how our 'fatigue' sensation differs from that of people undergoing chemo or from that of people with MS for example. What does appear to differ is how our 'fatigue' is set off and then progresses after exertion - the delayed peaking effect - plus the overall symptom pattern it is always part of. That's where the focus needs to go: on the differences.

    We're hampered by the fact that 'fatigue' to most people is just one thing, unlike a headache for example which can be several things. Even people who have never experienced a migraine know that a migraine is different from an ordinary tension headache, even if we can't truly imagine what it is like. And as a result migraine researchers don't mix up all sorts of headache sufferers in their studies, give them an aspirin, and then tell migraineurs that an aspirin should work for them, too, if only they believed strongly enough in its effect.
     
  16. TiredSam

    TiredSam Moderator Staff Member

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    Fatigued, tired, exhausted etc aren't very exact, but I use "exhausted" and "knackered" to my wife to describe what kind of day it is (nobody else asks / knows, so it's not like I have to choose my words carefully with others). I don't think we should beat ourselves up for not being exact, or not being precise enough to distinguish how we feel from genuine tiredness / exhaustion. I don't think there are any words or any way of describing our symptoms which wouldn't have been hijacked by those with an agenda, so whatever we call ourselves, that's what'll be hijacked and twisted. And to be honest, when I'm symptomatic, the last thing I'm capable of is linguistic precision.
     
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  17. yME

    yME Established Member

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    For twenty plus years I have felt ME was very akin to exposure I experienced in 1979. In essence Exposure is body fatigue, or inability of body core to maintain temperature causing multiple physical and mental symptoms. Energy is unavailable due to lack of ‘food’ or unsustainable wicking away due to demand, PEM? I even get the same up tick in body temperature when exceeding my capability.

    Yet linguistically when we say exposure, fatigue is assumed as just one symptom. Reason being exposure has been researched correctly, ME has not. Last week I corrected my gp as we were on the phone, so I was confidently rested. I think he finally comprehended the potential difference between mental fatigue (what ever that means) and a body lacking motional power. We need a new word like dauer until research catches up. continuing with the word fatigue creates an assumption in the doctors and public’s mind which is quickly and glibly passed over. Using Dauer creates that what? moment.
     
  18. Ebb Tide

    Ebb Tide Established Member (Voting Rights)

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    In the early months of being ill, I was having a phone appointment with my GP about extending my (in UK stupidly named) 'Fit Note' so that I would still receive sick pay although unable to work.

    I was trying to explain how difficult basic tasks of daily living were, and giving the example of how hard washing myself was, as in showering or bathing.
    He replied, "Oh, so you are feeling washed out" as he merrily typed that into my notes. I didn't have the energy to correct him.
     
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  19. Andy

    Andy Committee Member & Outreach

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  20. Ravn

    Ravn Senior Member (Voting Rights)

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    Looks like the Registry launch was more even popular than anticipated :thumbup: - and that's only in the US for now, the international launch is still to come.
     

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