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UK:ME Association funds research for a new clinical assessment toolkit in NHS ME/CFS specialist services, 2023

Discussion in 'ME/CFS research news' started by InitialConditions, May 8, 2023.

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Page 55 of 64
  1. bobbler

    bobbler Senior Member (Voting Rights)

    Messages:
    3,780
    To be fair that PROMS survey is so long that if they had to print it off a few times for proof checking and spellcheck it would cost a fortune in ink and paper ?
     
    bobbler, Sep 5, 2024
    #1081
    Missense, MEMarge, hotblack and 6 others like this.
  2. MrMagoo

    MrMagoo Senior Member (Voting Rights)

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    1,230
    lol
    Especially as there’s always admin errors
     
    MrMagoo, Sep 5, 2024
    #1082
    Missense, MEMarge, hotblack and 4 others like this.
  3. Sean

    Sean Moderator Staff Member

    Messages:
    8,104
    Location:
    Australia
    The lack of self-awareness in some people never ceases to astound me. It is either that or he knows what he is doing and just doesn't give a shit about the harm it causes.
    Clinician, heal thyself.
     
    Sean, Sep 5, 2024
    #1083
    Missense, MEMarge, hotblack and 12 others like this.
  4. bobbler

    bobbler Senior Member (Voting Rights)

    Messages:
    3,780
    :rofl:
     
    bobbler, Sep 5, 2024
    #1084
    Missense, hotblack, Ash and 12 others like this.
  5. rvallee

    rvallee Senior Member (Voting Rights)

    Messages:
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    Location:
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    I don't think they have the skills for that. Otherwise they wouldn't be where they are today. If there's one thing that is universal in biopsychosocial land, it's a complete inability and/or refusal to learn anything.

    About as likely as them becoming a space shuttle service by growing their toes into rockets.
     
    rvallee, Sep 5, 2024
    #1085
    Missense, hotblack, Ash and 9 others like this.
  6. MrMagoo

    MrMagoo Senior Member (Voting Rights)

    Messages:
    1,230
    The BPS need a silver bullet - shot from the biomedical research gun, metaphorically speaking. They won’t stop or change their thinking, they will do a sideways move. But their glory days are over.
     
    MrMagoo, Sep 5, 2024
    #1086
    Missense, hotblack, Ash and 5 others like this.
  7. Sean

    Sean Moderator Staff Member

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    Location:
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    Maybe. They are proving very resilient and resistant to substantive reform, and the rest of the power structure is not doing a good job yet at removing them and their shit theories from practical application.
     
    Sean, Sep 6, 2024
    #1087
    Tal_lula, Nightsong, MEMarge and 8 others like this.
  8. MrMagoo

    MrMagoo Senior Member (Voting Rights)

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    MrMagoo, Sep 14, 2024
    #1088
    Missense, Nightsong, Kitty and 5 others like this.
  9. hotblack

    hotblack Senior Member (Voting Rights)

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    I was interested that they’re only looking for a limited number (250) of surveys to be completed to check if the “revised version provides the robust data that we expect it to”.

    Is this normal practice? Will a small sample size allow them to verify? Do we know the criteria for verifying the robustness of the data collected?
     
    hotblack, Sep 14, 2024
    #1089
    Missense, Hutan, alktipping and 8 others like this.
  10. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    It would help to know what 'robustness' would mean here. I have no idea.
     
    Jonathan Edwards, Sep 14, 2024
    #1090
    Nellie, Sean, Missense and 11 others like this.
  11. hotblack

    hotblack Senior Member (Voting Rights)

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    Location:
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    This is what I was thinking. Are they verifying that the data is similar in structure or content to the data they got before? That it matches their subjective expectations? Or what? And how, with a different and self selective small sample from previous samples, do you do this?

    What is the meaning and the test here for robustness.

    They may well have solid methodology and I’m no expert on this stuff, but it’s really unclear to me what they’re doing.
     
    hotblack, Sep 14, 2024
    #1091
    Sean, Missense, Hutan and 6 others like this.
  12. bobbler

    bobbler Senior Member (Voting Rights)

    Messages:
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    This is such a huge concern and it feels like none of the key players are bothered tgat it’s aiming to redefine ‘what the illness is’ by it only being ‘better or worse’ the measures THIS black box method has apparently decided upon

    it feel like the cup and ball trick whether those doing it seem to all realise it or not themselves even

    the important part of having such huge data would have been to triangulate the measures themselves because finding a reliability on eg subjective measures of exhaustion and whether the illness is a lot deteriorated objectively 6months later is what’s missing with the condition.

    Made into an emergency almost by the approach of the medical profession and misinformation turning it into a hostile gaslighting environment removing all normal options when someone’s health is going down - me/cfs are only allowed to smile whilst their body deteriorates, ‘act nice’, stop asking for anything and watch their entitlement to essentials slip away or be put thru something that will destroy their health so that they can’t speak or write. Then no one will help them but it’ll be their fault for not applying for these.

    are they still measuring these ‘coerced, threatened, intimidated replies’ as ‘how someone is’ instead of ‘level of coercion’? Then just ignore people being bedbound forevermore 6months later?

    it’s been the worlds biggest con to hold a gun to our head whilst making us sign off we are fine and don’t need any pensions or benefits during the window it all has to be done under the threat of GET,CBT and extreme further disability. Then refuse to allow all the people shafted when that extra disability happens six months on to even be ‘seen’ to exist. We are disappeared


    I have a grim feeling this psychometric - which is black box - isn’t making sure all that gaslighting and misinformation is calibrated. But instead that’s what it’ll be based on

    the implications are huge from this.

    it doesn’t matter what their calls say these ‘psychometrics’ if you want to call it that are still supposed to be based on what ‘goes in’ being proper measures that make up the condition but also can be measured well - just like any normal way of doing things that doesn’t black box the calculation.

    It should never have been people with the agendas the individuals here are involved in anywhere near something like this.

    it won’t just affect our treatment but our entire lives and rights I think that’s what people don’t get, because they don’t want to hear from people like me when it happens. I just got trampled , left with no help, spend my entire life being kept terrified of losing freedom vs doing so by handing over my health and rights (the no choice game), my chance to plan like any other person with a terrible illness or have conversations where I knew I’d be respected removed and replaced with being risk. I was eaten up then ignored by everyone so still no one wants to hear how coercive a life all their attitude they think is just a small thing and ‘motivating’ actually adds up to living under.

    this feels like a back door to introducing some dodgy measures still. Which will just lead to the same threats and coercion and brainwashing because they are subjective and people put their short term gold star over human rights and wrecking lives because they aren’t made to watch the consequences and the culture says it’s ok as long as it’s worded in a patronising way and done using the system.

    these people tell themselves they’ve worked with and ‘cured’ people altering ‘pacing them up’ fir six months. Then dont won’t to hear about that (‘doing more’at that point ) wasn’t the ‘outcome’ but the ‘dosage/drug’ and they don’t want to see the ‘real outcome’ 6months and years down the line from that. You could pay yourself on the back for not fixing a broken leg but pacing them up walking on it for the same time but unless you are doing x-rays and comparing pain for the rest of their life to those who had a pin or cast to fix it you aren’t ’measuring the right thing’ as the actual condition’.

    I feel desperate from all this and my life’s already gone - I never had one it was left as terror finishing myself off working to please people who just kicked me for getting iller from it. And never did intend to investigate. And now all the window for my choices have gone I’m just left. Broken but I just want acknowledgment of what’s been done. But the cheek they still want more and want to run the cycle again and still infer somehow it’s lack of motivation. There’s no more motivation than blind terror of losing your freedom to hand every thing and every safety net over just to survive another year ‘free’ as long as you keep hurting yourself and pretending and saying nice things about those who have got it very wrong so as not to upset them into becoming vindictive.

    now we’ve got them lobbying to stay near us vulnerable people they did this to and want to cover it up for, using a black box measure to hide its all based on measures that can be coerced with these threats. And when we get so ill we end up in hospital we now know anyone’s literal worst nightmare awaits.

    there is no peace. There is no amount of doing the right thing in forward planning and paying your dues for safety nets that keep you safe. These are people who did everything right who found out the last thing anything is is honourable if you leave measures open to manipulation particularly when it’s as easy as it made with us due to how vulnerable we’ve been made by lack of support or bystanders caring thanks to untruths about us.

    and this kind of thing is just policy written into something using an algorithm to make it harder to point out and evidence the systemic flaws behind what’s being done to us. It’s terrifying.

    I’ve done assessment policies and these things have to be written out tested, robust but very transparent indeed so you can measure how much weight might be in a measure that is flawed in the data obtainable fir it and see how dodgy it makes something. None of this will be possible here. It can be garbage in because the focus is on if you throw enough variables you don’t need to worry whether those variables can’t be measured well or don’t mean much.

    and because their definition of ‘recovered’ is ‘can you force a cfs patient to act better and say they are under threat of proper life damaging things and their only psychological choice to get thru it is hope for the best this no pain no gain will work not leave them both worse but also having signed say all safety nets’ short term NOT proper follow up 12months and more later. Particularly an area where Nice had to flag this issue outright that long term outcomes need to be used to measure the actual illness and separate it from the gaslighting used to influence and kid - because it takes 2yrs for people to realise the dream they’ve been sold was a con and their body is going to be permanently worse.

    In fact this area says they won’t measure harms ‘because that’s us being negative’ what other patients are banned from being heard or told of fir reporting (or indeed just looking:l/being harmed) harms?

    all this can show is how when given all the license in the world and all the levers to coerce people , just how much you can force answers from them because we were all brainwashed ‘we won’t get worse’ until we did and then our mouths are metaphorically taped up with a label and we are shunned.

    yet they keep being allowed to only focus on / stack the decks with those in those early days (before the impact becomes clear as not ‘maybe I just got a virus or did it wrong and ‘it’s just a set back’ becomes obvious it’s not that at all but life long deterioration- it takes a while to be sure if that) under that brainwashing and nudges by subjective measures.
     
    Last edited: Sep 14, 2024
    bobbler, Sep 14, 2024
    #1092
    Sean, Hutan, alktipping and 8 others like this.
  13. Trish

    Trish Moderator Staff Member

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    Location:
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    :hug: @bobbler, that was heartfelt. Thank you for sharing your thoughts so openly.
     
    Trish, Sep 14, 2024
    #1093
    MEMarge, Sean, Hutan and 9 others like this.
  14. bobbler

    bobbler Senior Member (Voting Rights)

    Messages:
    3,780
    I’m just seeing a con in front of my eyes because I’ve done these things of measures properly in my work before and analysed how they flow through properly (thank goodness it was another area where not only was I allowed but these flaws being kept an eye on was expected) because measures can only be proxies

    their reliability and appropriateness can’t be suitably eyeballed in the way it needs to be when it’s rolled into an algorithm without the transparency I’m used to having to work under - that isn’t here at all. Using the psychometric testing can only look at correlations at best, not interrogate the worth of each measure being weighted in. There’s no way I’d have gotten away with not having discussions used about the dataset reliability for each individual measure. Endlessly. Most figures you are only finding a proxy and some can have big flaws so there needs to be a way of checking for the errors inherent in those sets.

    at the same time I’ve been inside all of this culture as a puppet - and those who played their role in it will never want to see. It’s not healthcare they are doing. It’s an extension of tricks of the type used for managing people out - ‘prove you are trying by being positive’ whilst the window is short on all the entitlements normal people get like ill health pensions or benefits involve realistic assessments that are timely.

    it feels so obvious in hindsight that this is about muddying the waters on basic data showing how the illness progresses. Under different conditions. And about things like ill health retirement and esa you have to complete fast to access ever again. People kidding themselves they will have a short rest, up their activity, then just go get another job takes away all the good advice they should be entitled to, so they can’t make informed decisions and even if they could all parts of the system have been given wrong info so undermine it.

    Yet it’s short sighted because if they dropped that most could avoid getting there by having real adjustments early enough on and accepting part time forever is better than forcing up for us to then be forever broken. We could have had lives instead of awful struggles terrified to survive then scrap heap. But they ‘got their 6month con’ showing they ‘kept’ (forced) us in work

    One could be suss the ‘positivity’ has nothing to do with the well-being of the individual which realistic optimism backed up with being honest about the problem and proper support would be. Either way it gerrymanders all results and all medical notes until long term when someone ends up broken and it seems to ‘come from nowhere’

    and having people not doubted or made scared by threats to say they are getting worse , that something didn’t work and it not being twisted to reflect on them. So they are scared to say that otherwise it’s used to wrongly suggest mental health (not thinking positively enough) was the cause. So there is a file showing we said how ill we were and how badly things were affecting us

    we were trained by the system to be terrified to be honest about how bad our health was. And surprise surprise they only want to use measures that are still coerced like this with ‘hope’ hiding threats.
     
    Last edited: Sep 16, 2024
    bobbler, Sep 14, 2024
    #1094
    Sean, Tal_lula, alktipping and 8 others like this.
  15. Trish

    Trish Moderator Staff Member

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    55,578
    Location:
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    For the record:
     
    Trish, Sep 14, 2024
    #1095
    Hutan, Nightsong, Lou B Lou and 6 others like this.
  16. Trish

    Trish Moderator Staff Member

    Messages:
    55,578
    Location:
    UK
    CONSENT FORM
    • I have read the participant information sheet (link) and have had opportunity to consider the information, ask questions and had these answered satisfactorily.
    • I understand that my participation is voluntary and that I am free to withdraw at any time without giving a reason and without detriment to myself. I understand that it will not be possible to remove my data. I agree to take part on this basis.
    • I understand that any anonymised data collected may be made available to other researchers who share the same values.
    • I understand that data collected during the study may be looked at by individuals from The University of Manchester or regulatory authorities. I give permission for these individuals to have access to my data.
    • I agree to take part in this study.

    Have you been diagnosed with ME/CFS?
    • No

    • Yes


    Have you been diagnosed with Long-Covid OR was your ME/CFS triggered by a Covid infection?
    • No

    • Yes


    What is your location of residence?

    Gender:
    • Male

    • Female

    • Non-binary / third gender

    • Prefer not to say


    Age:

    Time (years) since you developed ME/CFS or Long-Covid:

    Please Choose which level best describes how ME/CFS/Long-Covid affects you at the moment: PLEASE NOTE: Activities can be physical, cognitive, social, emotional etc.
    • Level 1: Adapting activity. You can do the things that are important to you, but may need to adapt how much you do, or how you do them.

    • Level 1-2. In between levels 1 and 2

    • Level 2: Prioritising Activities. You can do the things that are most important to you, but you limit or avoid other activities to prioritise them. For example: stopping hobbies to prioritise work (or vice versa)

    • Level 2-3. In between levels 2 and 3


    • Level 3: Limited independence. You can carry out some light/ non-strenuous activities but with rests. You will need help with some activities (including having someone else to do them) e.g. domestic chores.

    • Level 3-4. In between levels 3 and 4.

    • Level 4: Mostly housebound. You need help with many activities such as domestic chores or personal care (including having someone else to do the chores). Mobility is probably severely restricted so that it is challenging to travel outside your home. You may need a wheelchair (or similar) and/or to travel by a vehicle (eg car) if going outside.

    • Level 4-5: In between levels 4 and 5
    • Level 5: Mostly bedbound. You will need help nearly all activities. At the more severe end of this level, this could include environmental adaptations to accommodate hypersensitivity to sound, light and/or touch, support for severe cognitive impairments and/or difficulty eating including the need to be artificially fed.


    SECTION 2: FATIGUE


    1. Physical exhaustion after previously undemanding physical, cognitive or social activity

    Over the last month, how often has this symptom happened?
    I do not have this symptom     Some of the time Most of the time All of the time
    .

    2. Feeling exhausted but restless (often referred to as ‘wired but tired’) after previously undemanding activity



    Over the last month, how often has this symptom happened?
    I do not have this symptom     Some of the time Most of the time All of the time
    .

    3. Loss of physical strength, or stamina during/ after a previously undemanding activity

    Over the last month, how often has this symptom happened?
    I do not have this symptom     Some of the time Most of the time All of the time
    .

    4. Cognitive/ mental exhaustion (often referred to as ‘brain fog’) after previously undemanding activity

    Over the last month, how often has this symptom happened?
    I do not have this symptom     Some of the time Most of the time All of the time
    .

    5. Post exertional malaise (PEM).
    PEM describes a worsening of symptoms after seemingly trivial or undemanding activity of any description. It is often referred to PEM as ‘a crash’, or ‘relapse’. It may a) last for hours, days (or more); b) worsen over time and c) the onset can be immediate and/or delayed for hours or days.

    Over the last month, how often has this symptom happened?
    I do not have this symptom     Some of the time Most of the time All of the time
    .

    SECTION 3: SLEEP SYMPTOMS


    6. Change to sleep pattern (e.g. changing from an early bird to a night owl or having ‘day-night reversal’)

    Over the last month, how severe has this symptom been?
    I do not have this symptom     Mild- Moderate symptoms - Some of the time and interfering with some activities Severe symptoms - most of the time and/or interfering with most activities Very severe symptoms - all of the time and/or unable to carry out activities
    .

    7. Needing to nap/sleep during the day

    Over the last month, how severe has this symptom been?
    I do not have this symptom     Mild- Moderate symptoms - Some of the time and / or interfering with some activities Severe symptoms - most of the time and/or interfering with most activities Very severe symptoms - all of the time and/or unable to carry out activities
    .

    8. Difficulty falling asleep when you want to sleep (during the day or night)

    Over the last month, how severe has this symptom been?
    I do not have this symptom     Mild- moderate symptoms - Some of the time and / or interfering with some activities Severe symptoms - most of the time and/or interfering with most activities Very severe symptoms - all of the time and/or unable to carry out activities
    .

    9. Difficulty with ‘sleep maintenance’ i.e. waking frequently during the night and/or waking up in the early hours of the morning

    Over the last month, how severe has this symptom been?
    I do not have this symptom     Mild- moderate symptoms - Some of the time and / or interfering with some activities Severe symptoms - most of the time and/or interfering with most activities Very severe symptoms - all of the time and/or unable to carry out activities
    .

    10. Taking a long time to ‘come to’ on waking (i.e. it may take some time to become aware and feel able to move/ function)

    Over the last month, how severe has this symptom been?
    I do not have this symptom     Mild- moderate symptoms - Some of the time and / or interfering with some activities Severe symptoms - most of the time and/or interfering with most activities Very severe symptoms - all of the time and/or unable to carry out activities
    .

    11. Feeling exhausted, flu-like or stiff on waking

    Over the last month, how severe has this symptom been?
    I do not have this symptom     Mild- moderate symptoms - Some of the time and / or interfering with some activities Severe symptoms - most of the time and/or interfering with most activities Very severe symptoms - all of the time and/or unable to carry out activities
    .
     
    Last edited: Sep 14, 2024
    Trish, Sep 14, 2024
    #1096
    Hutan, Lou B Lou, hotblack and 3 others like this.
  17. Trish

    Trish Moderator Staff Member

    Messages:
    55,578
    Location:
    UK
    SECTION 4: COGNITIVE SYMPTOMS


    12. Memory and/or concentration problems: Forgetfulness; difficulty concentrating; being easily distracted; losing your train of thought or track of conversations

    Over the last month, how often has this symptom happened?
    I do not have this symptom     Some of the time Most of the time All of the time
    .

    13. Slowness of thoughts and/ or reactions

    Over the last month, how often has this symptom happened?
    I do not have this symptom     Some of the time Most of the time All of the time
    .

    14. Difficulty starting and/or finishing tasks.
    NB If you are unable to do this, answer 'all of the time'.

    Over the last month, how often has this symptom happened?
    I do not have this symptom     Some of the time Most of the time All of the time
    .

    15. Difficulty making decisions and problem-solving (‘working things out’).
    NB If you are unable to do this, answer 'all of the time'.

    Over the last month, how often has this symptom happened?
    I do not have this symptom     Some of the time Most of the time All of the time
    .

    16. Difficulty getting organised.
    NB If you are unable to do this, answer 'all of the time'.

    Over the last month, how often has this symptom happened?
    I do not have this symptom     Some of the time Most of the time All of the time
    .

    17. Difficulty multi-tasking (doing more than one thing at once e.g. walking and talking).
    NB If you are unable to do this, answer 'all of the time'.

    Over the last month, how often has this symptom happened?
    I do not have this symptom     Some of the time Most of the time All of the time
    .

    18. Difficulty understanding/ taking in information and/or retaining information

    Over the last month, how often has this symptom happened?
    I do not have this symptom     Some of the time Most of the time All of the time
    .

    19. Communication difficulties: Difficulty finding the right words; getting words (or numbers) jumbled up.
    NB If you are unable to do this, answer 'all of the time'.

    Over the last month, how often has this symptom happened?
    I do not have this symptom     Some of the time Most of the time All of the time
    .

    20. Difficulty reading and/ or writing.
    NB If you are unable to do this, answer 'all of the time'.

    Over the last month, how often has this symptom happened?
    I do not have this symptom     Some of the time Most of the time All of the time
    .


    SECTION 5: PAIN AND MUSCULOSKELETAL SYMPTOMS


    21. Musculo-skeletal (muscle, joint, and/or bone) pain

    Over the last month, how severe has this symptom been?
    I do not have this symptom     Mild- moderate symptoms - Some of the time and / or interfering with some activities Severe symptoms - most of the time and/or interfering with most activities Very severe symptoms - all of the time and/or unable to carry out activities
    .

    22. Jaw pain

    Over the last month, how severe has this symptom been?
    I do not have this symptom     Mild- moderate symptoms - Some of the time and / or interfering with some activities Severe symptoms - most of the time and/or interfering with most activities Very severe symptoms - all of the time and/or unable to carry out activities
    .

    23. Eye pain

    Over the last month, how severe has this symptom been?
    I do not have this symptom     Mild- moderate symptoms - Some of the time and / or interfering with some activities Severe symptoms - most of the time and/or interfering with most activities Very severe symptoms - all of the time and/or unable to carry out activities
    .

    24. Nerve pain or neuralgia

    Over the last month, how severe has this symptom been?
    I do not have this symptom     Mild- moderate symptoms - Some of the time and / or interfering with some activities Severe symptoms - most of the time and/or interfering with most activities Very severe symptoms - all of the time and/or unable to carry out activities
    .

    25. Muscle tightness

    Over the last month, how severe has this symptom been?
    I do not have this symptom     Mild- moderate symptoms - Some of the time and / or interfering with some activities Severe symptoms - most of the time and/or interfering with most activities Very severe symptoms - all of the time and/or unable to carry out activities
    .

    26. Muscle twitches, cramps, jerks and/or spasms

    Over the last month, how severe has this symptom been?
    I do not have this symptom     Mild- moderate symptoms - Some of the time and / or interfering with some activities Severe symptoms - most of the time and/or interfering with most activities Very severe symptoms - all of the time and/or unable to carry out activities
    .

    27. Tremors: shakiness or wobbliness in the limbs, head or trunk

    Over the last month, how severe has this symptom been?
    I do not have this symptom     Mild- moderate symptoms - Some of the time and / or interfering with some activities Severe symptoms - most of the time and/or interfering with most activities Very severe symptoms - all of the time and/or unable to carry out activities
    .

    28. Slow and/ or weak movement

    Over the last month, how severe has this symptom been?
    I do not have this symptom     Mild- moderate symptoms - Some of the time and / or interfering with some activities Severe symptoms - most of the time and/or interfering with most activities Very severe symptoms - all of the time and/or unable to carry out activities
    .

    29. Slow or slurred speech

    Over the last month, how severe has this symptom been?
    I do not have this symptom     Mild- moderate symptoms - Some of the time and / or interfering with some activities Severe symptoms - most of the time and/or interfering with most activities Very severe symptoms - all of the time and/or unable to carry out activities
    .

    30. Clumsiness and/ or balance problems (e.g. dropping or knocking things over; tripping and slipping; knees giving way, or catching your toes)

    Over the last month, how severe has this symptom been?
    I do not have this symptom     Mild- moderate symptoms - Some of the time and / or interfering with some activities Severe symptoms - most of the time and/or interfering with most activities Very severe symptoms - all of the time and/or unable to carry out activities
    .

    SECTION 6: NEUROLOGICAL SYMPTOMS

    31. Headaches and/or migraines.
    A migraine is typically a severe headache with a throbbing pain on one side of the head. There may be warning signs beforehand such as dizziness; visual changes, numbness or pins and needles, and/or difficulty speaking.

    Over the last month, how severe has this symptom been?
    I do not have this symptom     Mild- moderate symptoms - Some of the time and / or interfering with some activities Severe symptoms - most of the time and/or interfering with most activities Very severe symptoms - all of the time and/or unable to carry out activities
    .

    32. Increased sensitivity to sounds and/or sensitivity to light/ moving images

    Over the last month, how severe has this symptom been?
    I do not have this symptom     Mild- moderate symptoms - Some of the time and / or interfering with some activities Severe symptoms - most of the time and/or interfering with most activities Very severe symptoms - all of the time and/or unable to carry out activities
    .

    33. Increased or decreased sensitivity to tastes and/or smells including ‘phantom’ smells which aren’t really there

    Over the last month, how severe has this symptom been?
    I do not have this symptom     Mild- moderate symptoms - Some of the time and / or interfering with some activities Severe symptoms - most of the time and/or interfering with most activities Very severe symptoms - all of the time and/or unable to carry out activities
    .
    34. Increased sensitivity to touch/ pressure

    Over the last month, how severe has this symptom been?
    I do not have this symptom     Mild- moderate symptoms - Some of the time and / or interfering with some activities Severe symptoms - most of the time and/or interfering with most activities Very severe symptoms - all of the time and/or unable to carry out activities
    .

    35. Increased sensitivity to temperature (e.g. hot food or drinks; temperature of the room; hot or cold weather). This may involve sweating, hot flushes, chills, or feeling hot or cold in temperatures that others would find unremarkable.

    Over the last month, how severe has this symptom been?
    I do not have this symptom     Mild- moderate symptoms - Some of the time and / or interfering with some activities Severe symptoms - most of the time and/or interfering with most activities Very severe symptoms - all of the time and/or unable to carry out activities
    .
    36. Numbness or altered sensations (e.g. tingling, stabbing, burning, feeling something is crawling/ running over your skin)

    Over the last month, how severe has this symptom been?
    I do not have this symptom     Mild- moderate symptoms - Some of the time and / or interfering with some activities Severe symptoms - most of the time and/or interfering with most activities Very severe symptoms - all of the time and/or unable to carry out activities
    .

    37. Tinnitus or 'ringing in the ears'

    Over the last month, how severe has this symptom been?
    I do not have this symptom     Mild- moderate symptoms - Some of the time and / or interfering with some activities Severe symptoms - most of the time and/or interfering with most activities Very severe symptoms - all of the time and/or unable to carry out activities
    .

    38. Pain and /or tenderness from sensations others would not find painful e.g. touch, sound, visual stimuli, temperature

    Over the last month, how severe has this symptom been?
    I do not have this symptom     Mild- moderate symptoms - Some of the time and / or interfering with some activities Severe symptoms - most of the time and/or interfering with most activities Very severe symptoms - all of the time and/or unable to carry out activities
    .

    39. Blurred vision/ double vision/ difficulty focusing

    Over the last month, how severe has this symptom been?
    I do not have this symptom     Mild- moderate symptoms - Some of the time and / or interfering with some activities Severe symptoms - most of the time and/or interfering with most activities Very severe symptoms - all of the time and/or unable to carry out activities
    .

    40. Dizziness / vertigo

    Over the last month, how severe has this symptom been?
    I do not have this symptom     Mild- moderate symptoms - Some of the time and / or interfering with some activities Severe symptoms - most of the time and/or interfering with most activities Very severe symptoms - all of the time and/or unable to carry out activities
    .
     
    Last edited: Sep 14, 2024
    Trish, Sep 14, 2024
    #1097
    Tal_lula, Hutan, Lou B Lou and 3 others like this.
  18. Trish

    Trish Moderator Staff Member

    Messages:
    55,578
    Location:
    UK
    SECTION 7: GASTROINTESTINAL SYMPTOMS

    41. Nausea and/or vomiting (feeling or being sick)

    Over the last month, how often did you have this symptom?
    I do not have this symptom     Some of the time Most of the time All of the time
    .
    42. Abdominal pain and/or bloating

    Over the last month, how severe has this symptom been?
    I do not have this symptom     Mild- Moderate symptoms.- some of the time and/or interfering with some activities Severe symptoms - most of the time and/or interfering with most activities Very severe symptoms - all of the time and/or unable to carry out activities
    .

    43. Excessive flatulence (farting a lot)

    Over the last month, how severe has this symptom been?
    I do not have this symptom     Mild- Moderate symptoms.- some of the time and/or interfering with some activities Severe symptoms - most of the time and/or interfering with most activities Very severe symptoms - all of the time and/or unable to carry out activities
    .

    44. Changes in bowel habit: diarrhea, constipation, urgency and /or frequency of defecation (having a poo)

    Over the last month, how severe has this symptom been?
    I do not have this symptom     Mild- Moderate symptoms.- some of the time and/or interfering with some activities Severe symptoms - most of the time and/or interfering with most activities Very severe symptoms - all of the time and/or unable to carry out activities
    .

    45. Change of appetite: increase or decrease.

    Over the last month, how severe has this symptom been?
    I do not have this symptom     Mild- Moderate symptoms.- some of the time and/or interfering with some activities Severe symptoms - most of the time and/or interfering with most activities Very severe symptoms - all of the time and/or unable to carry out activities
    .

    45. Eating and drinking problems; biting, chewing and/or swallowing difficulties.
    NB If you are unable eat, answer 'very severe'.

    Over the last month, how severe has this symptom been?
    I do not have this symptom     Mild- Moderate symptoms.- some of the time and/or interfering with some activities Severe symptoms - most of the time and/or interfering with most activities Very severe symptoms - all of the time and/or unable to carry out activities
    .

    46. Being too tired to eat.
    NB If you are unable eat, answer 'very severe'.

    Over the last month, how severe has this symptom been?
    I do not have this symptom     Mild- Moderate symptoms.- some of the time and/or interfering with some activities Severe symptoms - most of the time and/or interfering with most activities Very severe symptoms - all of the time and/or unable to carry out activities
    .

    47. Dry eyes and/or mouth

    Over the last month, how severe has this symptom been?
    I do not have this symptom     Mild- Moderate symptoms.- some of the time and/or interfering with some activities Severe symptoms - most of the time and/or interfering with most activities Very severe symptoms - all of the time and/or unable to carry out activities
    .

    48. Bladder problems: frequency or urgency of urination (having a wee), or feeling the bladder is not completely empty

    Over the last month, how severe has this symptom been?
    I do not have this symptom     Mild- Moderate symptoms.- some of the time and/or interfering with some activities Severe symptoms - most of the time and/or interfering with most activities Very severe symptoms - all of the time and/or unable to carry out activities
    .

    SECTION 8: CARDIOVASCULAR and RESPIRATORY SYMPTOMS


    50. Palpitations: fast or irregular heartbeats during/after previously undemanding activity, or at rest

    Over the last month, how severe has this symptom been?
    I do not have this symptom     Mild- moderate symptoms - Some of the time and / or interfering with some activities Severe symptoms - most of the time and/or interfering with most activities Very severe symptoms - all of the time and/or unable to carry out activities
    .

    51. Chest pain at rest or during/ after previously undemanding activity

    Over the last month, how severe has this symptom been?
    I do not have this symptom     Mild- moderate symptoms - Some of the time and / or interfering with some activities Severe symptoms - most of the time and/or interfering with most activities Very severe symptoms - all of the time and/or unable to carry out activities
    .

    52. Shortness of breath or trouble catching your breath. At rest, or during /after previously undemanding activity

    Over the last month, how severe has this symptom been?
    I do not have this symptom     Mild- moderate symptoms - Some of the time and / or interfering with some activities Severe symptoms - most of the time and/or interfering with most activities Very severe symptoms - all of the time and/or unable to carry out activities
    .

    53. Poor circulation: Cold hands, and/or feet which is not caused by the temperature of the surroundings and/or inability to warm up promptly after becoming cold

    Over the last month, how severe has this symptom been?
    I do not have this symptom     Mild- moderate symptoms - Some of the time and / or interfering with some activities Severe symptoms - most of the time and/or interfering with most activities Very severe symptoms - all of the time and/or unable to carry out activities
    .

    54. Orthostatic intolerance:
    Increase in symptoms (e.g. dizziness, light-headedness/ fainting, palpitations, breathlessness, headache, nausea) when changing to a more upright position (e.g. moving from lying to sitting or standing up) or while sitting or standing. Symptoms may ease when you sit or lie with their feet up. Or you may be able to do more cognitive activity (e.g. reading, talking, or desk work) when lying or with feet up rather than when sitting or standing.
    NB If you are unable to sit or stand, answer 'very severe'.

    Over the last month, how severe has this symptom been?
    I do not have this symptom     Mild- moderate symptoms - Some of the time and / or interfering with some activities Severe symptoms - most of the time and/or interfering with most activities Very severe symptoms - all of the time and/or unable to carry out activities
    .

    55. Swollen extremities (hands /fingers or feet/toes) if in upright position (sitting or standing) for a long time. The skin may also become discoloured (usually turning pink or purple).
    NB If you are unable to sit or stand, answer 'very severe'.

    Over the last month, how severe has this symptom been?
    I do not have this symptom     Mild- moderate symptoms - Some of the time and / or interfering with some activities Severe symptoms - most of the time and/or interfering with most activities Very severe symptoms - all of the time and/or unable to carry out activities
    .

    56. Abnormal sweating (e.g. night sweats/ hot flushes or chills)

    Over the last month, how severe has this symptom been?
    I do not have this symptom     Mild- moderate symptoms - Some of the time and / or interfering with some activities Severe symptoms - most of the time and/or interfering with most activities Very severe symptoms - all of the time and/or unable to carry out activities
    .

    SECTION 9: IMMUNE SYSTEM SYMPTOMS

    57. Sore throat or hoarse voice

    Over the last month, how severe has this symptom been?
    I do not have this symptom     Mild- moderate symptoms - Some of the time and / or interfering with some activities Severe symptoms - most of the time and/or interfering with most activities Very severe symptoms - all of the time and/or unable to carry out activities
    .
    58. Tender or sore lymph nodes in the armpits, groin and/or neck

    Over the last month, how severe has this symptom been?
    I do not have this symptom     Mild- moderate symptoms - Some of the time and / or interfering with some activities Severe symptoms - most of the time and/or interfering with most activities Very severe symptoms - all of the time and/or unable to carry out activities
    .

    59. Feeling like you have a raised temperature with hot sweats and/or chills, although it may be normal when measured

    Over the last month, how severe has this symptom been?
    I do not have this symptom     Mild- moderate symptoms - Some of the time and / or interfering with some activities Severe symptoms - most of the time and/or interfering with most activities Very severe symptoms - all of the time and/or unable to carry out activities
    .

    60. Allergic reactions (e.g. runny eyes, stuffy nose, cough, abdominal pain, feeling sick, flushed/blotchy/itchy skin, rashes, headache, wheezing or breathlessness) to smells, tastes, foods, medications, plants, or chemicals that you did not previously react to

    Over the last month, how severe has this symptom been?
    I do not have this symptom     Mild- moderate symptoms - Some of the time and / or interfering with some activities Severe symptoms - most of the time and/or interfering with most activities Very severe symptoms - all of the time and/or unable to carry out activities
    .

    61. Alcohol intolerance: feeling ill after drinking alcoholic drinks
    Over the last month, have you experienced this symptom?
    • No

    • Yes

    • Not relevant - I do not drink alcohol for other reasons

    Final Section


    Is there anything else about your symptoms you would like us to know?

    Is there anything else about the questionnaire you would like to tell us?
     
    Last edited: Sep 14, 2024
    Trish, Sep 14, 2024
    #1098
    Missense, Hutan, Lou B Lou and 4 others like this.
  19. bobbler

    bobbler Senior Member (Voting Rights)

    Messages:
    3,780
    Precisely. It could be like when Carson, stone etc used the hoover sign to identify a group who had FND then tested whether the ‘Hoover sign’ was a good differentiator by seeing if it identified those same people from those who ‘didn’t have FND’ .

    where is the measure that is definitely’the illness’ or ‘deterioration’ they are triangulating with?

    what we really need is data over 5yrs and to identify who is substantially deteriorated vs not at the end of that (by that point barn door obvious in function) and to be able to look back at loads of data to see which ‘signs’ or ‘patterns’ vs ‘subjective scores’ (which can be gerrymandered by hope and thinking it’s just hay fever or a virus shorter term) at least correlate well as signals someone was indeed ‘getting worse’

    what is this testing the data against?
     
    bobbler, Sep 14, 2024
    #1099
    Sean, Tal_lula, LJord and 6 others like this.
  20. MrMagoo

    MrMagoo Senior Member (Voting Rights)

    Messages:
    1,230
    It’s just devastating, more so since AfME replied to Trish’s letter and actually listened.
     
    MrMagoo, Sep 14, 2024
    #1100
    MEMarge, Ash, Missense and 12 others like this.
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