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Smartphone app and specialised clinic for chronic fatigue patients

Discussion in 'General ME/CFS News' started by melihtas, Jul 29, 2014.

  1. jimells

    jimells Senior Member

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    The specialized clinic sounds more interesting to me. I hope @taniaaust1 can get hooked up with them. She would do a good job of keeping their feet to the fire while getting their new service sorted out.

    I can't imagine this type of operation succeeding in the US. It's impossible to get doctors to actually talk to each other. Because there's nobody to bill?

    I actually had a neurologist who sent me to a rheumatologist who sent me to an endocrinologist who said I needed to see a neurologist. I'm not making this up. None of them took the illness seriously or offered any help whatsoever. But that didn't stop them from demanding their usual fees...
     
  2. Bob

    Bob

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    In my experience: glance at it, not showing the slightest bit of interest, make a quiet grunting sound, then pass it straight back to you, shrugging, while looking at you as if you are deluded about your illness, and wasting their time.
     
    ahimsa, taniaaust1, Valentijn and 3 others like this.
  3. fibrodude84

    fibrodude84 Senior Member

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    Looks cool and hope they get on Android soon
     
  4. SOC

    SOC Senior Member

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    Oh great. :rolleyes: So anyone who uses the app because they think they have CFS since they're more tired then usual will get their data included in research data. That's just what we need -- more screwed up sample sets showing no particular pattern. Or worse, a completely wrong pattern because more people with simple fatigue are using the app than people with ME/CFS -- which is quite likely. And it's all subjective, so even more ways to get a frighteningly poor data set. We have enough trouble with research using people who are self-diagnosed or diagnosed according to ridiculously broad criteria. We don't need more.

    I'm thrilled with the work the Griffiths folks are doing on our behalf. An app that would allow data collection from verified ME patients could provide some interesting insight. An app available to everyone on itunes is not that.
     
    Leopardtail and Valentijn like this.
  5. Bob

    Bob

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    Or, looking for potential benefits, the data might discern patterns in subsets of CFS patients, which could then be used to attempt to further define subsets in research studies?
     
  6. SOC

    SOC Senior Member

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    Could be... It would require some pretty high-powered computing to find genuine patterns/subsets in an essentially random set of data. Generally, when trying to derive subset data out of a big set, you still have some constraints on the big set. In other words, you know you have an identifiable set before you start subsetting. Still, our friends at Griffiths are a very clever bunch, so if it can be done, they're probably among the few who can do it.

    I'd still rather see some sort of filter built-in. Even patient-reported info on whether they were self-diagnosed, diagnosed by a GP according to Oxford/Empirical/Fukuda, or diagnosed by a biomedical ME/CFS specialist according to the CCC/ICC, would be better than no idea of the patients' actual diagnosis.

    To make my point clearer -- What if the illness in question was COPD? How good would the data be if we allowed anyone who felt breathless occasionally to subjectively report how they felt from day-to-day? Talk about a sloppy sample set! The actual COPD patients' data would be lost in the noise of the many people who are out of shape, hypochondriacs, heart patients, asthmatics, elderly, and all the other people who find themselves short of breath more often than they like. You'd have a thousand (or more) non-patients for every genuine COPD patient.

    You might learn something about shortness of breath, but it's unlikely you'd learn much about COPD specifically. Surely even more people will claim fatigue than shortness of breath, so the non-patient responder percentage is likely to be even higher in CFS.
     
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  7. Bob

    Bob

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    Do we know it doesn't ask those questions? It does ask 25 questions re personal details.
     
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  8. Bob

    Bob

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    melihtas likes this.
  9. taniaaust1

    taniaaust1

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    Im the same as mentally in my head I play this illness down a lot (its how I deal with the illness and try to stay happy) and Im so used to having no energy at all that I hardly notice I have no energy at all, its showing thou in my activities and how much I do in a day.

    When I had to do symptom documentation and rate them for a ME/CFS research study Im in. I had heaps of trouble with it, no idea how I should rate things. What is a 10 in pain for most is maybe only a 7-8 pain in me as I know what extreme pain feels like due to my past completely bedbound ME days where even pressure of the sheets on the bed upon my skin hurt me.

    If 10 is the highest level of pain you can imagine or think about. Ive experienced ME pain which far exceeds what childbirth felt like to me even with refusing drugs for pain relief as they made me sick, I tore during childbith too. Many with severe ME know what pain feels like up to the point where we actually pass out due to it.

    Level of childbirth pain for a normal healthy female person, would usually be a 10 and that would be the highest pain they would know. Men could well rate lower levels of pain as 10 as they may not know how bad pain can get. Anyway, I hate this kind of rating as I think it leads to false impressions being given off to others. A 10 in pain for a healthy person may only be given a 5 rating for a ME person.

    Pain where Im involuntary crying out due to it, Id only rate that currently as a 7. (Ive noticed too the way I rate things changes too occuring to what mood Im in, if Im in a bad down mood, I give things worst ratings so its not even reliable to self monitor even if I could easier work out how to rate things).

    Then I have the issues with my Aspergers, needing to rate things "correctly" (black and white thinking so I like to be exact, I hate guessing), when I also have the confusion on how to rate myself on top. That causes me heaps of stress if I cant be precise and if I know Im giving off answers which will probably be confusing to others.

    I got so stressed out trying to rate things with the ME/CFS research study, it took me days to attempt to rate my symptoms and I still couldnt do it how the researchers were asking and hence then not giving precise numbers eg saying instead it is somewhere between 20-40%. (Actually it took me 2-3 weeks to do that paperwork as it was soo hard and I had so many different symptoms I was trying to put a figure on and finding it near impossible to do without set guidelines for each thing and number. I gave myself symptoms several times just from trying to do it, its very hard thinking).

    On top of that is the confusion I know which would be given off by many or even most of my responses if Im pacing right. If Im pacing right (this means doing next to nothing, not being on my feet much at all etc), I then get hardly no symptoms at all then. So this whole thing if someone requested documentation of my results from me, could be used against me eg if Im doing nothing (no cooking, no anything) during the day, it flares up no symptoms) I then appear completely healthy (symptom wise).

    So would give off very wrong impressions on my current state if they are just looking at the symptoms. This kind of thing really needs to be used with one of those things which also measure activity.

    Even so if one isnt flaring symptoms up due to keeping activity low, people could try to say to do more and not believe how sick one is. Thing is I go to effort to keep my activity down as when over do things eg being on my feet, it can flare things up so much I end up in hospital. I flare up to crazy amounts of bad health. Activity is risky for me.

    The only way to control my symptoms from being severe is to basically be doing nothing (I dont have much of an inbetween symptom area with many of my symptoms).

    Yes, that is exactly what I need! Im not even aware half the time when Im shaking, at times others have had to point out to me I are shaking and that I need to sit down. Others too tell me things like "you have gone pale" etc etc. Im so used to being sick that Im not aware of how sick I are till Im quite sick. My symptoms really have to be in my face before I often start to aknowledge them eg having trouble picking something up cause Im shaking so much. I rely some on my support workers to actually tell me when Im worsening to help me avoid collapsing.

    Its my way of emotionally and mentally dealing with this illness, the less symptoms I notice, well the less they are going to get me down so I some how block a lot of it out, I wouldnt cope otherwise. I also find it quite disturbing when I put focus onto my symptoms more, as it can make me more aware of how sick I actually are.

    Rate my fatigue right now. I'd say its a 90/100 (100 being completely well). Thing is my 90 is probably most peoples 40 or maybe even lower. I do not know how it feels to be "normal", Ive been sick for too long. Anyway, I think symptom rating probably works better for those who have had this illness for less then 10 years and who still remember what it is like to be well.
     
    Last edited: Jul 30, 2014
  10. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    The clinic thing sounds interesting and need your gp's referral to see their GP which i assume has access to their research testing like cytokines and nk function testing. This is the sort of stuff that interests me. As for tracking symptoms etc they can be all over the place and alot of the time be dependent on how i slept.

    In australia its very hard to get viral titres measured, it would be good if this was done??

    Maybe a few small treatment trials with antivirals, rituximab, ampligen, is that asking too much.
     
    taniaaust1 likes this.
  11. Leopardtail

    Leopardtail Senior Member

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    I am thinking two things when watching this dialogue:
    one daily reporting or even weekly is too often for most of us, monthly or six monthly would be more likely.
    two we as a the ME community need to define the scales and describe that each point on a scale means.

    e.e.for pain
    0 no pain
    10 - a minor nuisance can be ignored
    20 - distracts me from tasks / tv when aggravated
    30 - distracts me all time
    50 causes sufficient pain and distraction that I drop things --- etc etc
    80 i am regularly woken from sleep by pain

    100 - minicsule pressure causes me severe pain

    For each measured item in an App, or a symptom tracking system , we need a similar (and complete scale)
     
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  12. taniaaust1

    taniaaust1

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    Thanks for your post Cheesus on this.

    Below is some things people can consider on how well this will work for all ME people.

    I couldnt even give me onset of ME a rating even if I knew that 10 was severe. My onset was a classical one of sudden flu like symptoms which sent me to bed (high fever, sore throat, muscle aches and pains and lethargy). Thing is my body could fight whatever ME is at first and hence I recovered after about 5-7 days and then was completely well till another bout of this hit me 2-3 months later.

    Over time these bouts of being hit by what I know now were ME (but for 9mths doctors kept on saying "you must of got another virus") become with shorter and shorter times in between and lasting a little longer. Till I got this illness full time a year later (when it went near full time or full time, that was when the post exertional stuff came in for me, when my body stopped obviously being able to fight this illness off or stopped being able to correct whatever goes on in ME).

    So my onset was bad symptoms.. it really hurt to walk due to my muscle pain/whole body pain, feeling very sick like I was going chuck (couldnt really eat), ear ache, very high fever (I used to run a 39-40 degree Celcuis fevers with these bouts so higher then normally happens in ME), bad sore throat (not quite like when I had severe EBV but almost), and swollen throat glands. On one of these early flares, weirdly around my eyes swelled up so I looked like a bullfrog so much to the point I could hardly see out from my eyes (could there be some connection to CMV for me? I do carry it and reactivation hasnt been ruled out).

    But would one rate ones onset high if these bad onset symptoms of the ME flares which put me in bed went for less then a week? and then I was well for the next 2-3 mths, no residue tiredness (I didnt even have post exertional fatigue, I didnt get that till my symptoms become full time). How does one rate severe symptoms but with short term crashes? (I had a sudden severe but slow onset).

    umm. Applications which show bust and boom I personally think would better show just how ill I are as its the only way one sees just how ill I am. When one sees that a little amount of of doing something makes me worst and flares things. How would how Ive been be rated in a week? if Ive had to be ambulanced to hospital to be given 2 bags of saline that week (set off by trying to make myself a dinner) but then had no symptoms the rest of the week as I didnt do hardly anything and just stayed laying or on my butt? .. and thankfully for the saline IV for being in my body for a couple of days.

    Whats a worst week, the week I had to be ambulanced to hospital? or a week where I didnt do meals at all to avoid issues and then didnt get any crashing or symptoms? What rates worst?

    I honestly can not see how any application can rate my health for a week if it isnt including my activity levels too.

    yeah. and you probably not have your own consistent rating scale, if you try to play with these for a while you probably will see you give worst ratings when you arent as emotionally strong then you may at a time when you are happy (even thou you are at same level of sickness which can be told by how or not how much you can do without causing issues).

    Does it allow one to note if one too anything for sleep on individual nights? My sleep program really various and various day by day if Im having trouble sleeping. So saying one slept 9hrs one night but not adding in it was cause one took a benzo for that one night, wouldnt be much help (I used to take benzos twice a week and cycle my sleep meds and things with some working better then others).

    Does one track actual sleep times too - as one may of had 8 hrs sleep but one may of not got to sleep till 3am in the morning.

    [/quote] The real test will be to use it regularly for a period of say 3 to 6 months and then to look back and see if it outlines any changes in functioning that you hadn't noticed. I already keep a diary that I fill out on the first of each month though for this specific purpose. Change can be so slow its sometimes useful to be able to look back so that you know you have gone forward. [/quote]

    I tend to monitor what my ME is about every 3-4 months as when Im in decline it will often be a slow one so not noticed week by week but if one compares several months with the previous several months, it makes it far easier to see if process/decline or the same has been made.

    What i use to judge if Im getting worst is things like How many times has the ME put me into hospital in that period? and what are I having to do with my drugs? (have I had to increase them, were I able to stop taking some? are they the same?).

    I also go by my wheelchair use which also helps me to easily see what things are doing or what is happening at my shopping trips eg 2 years ago I used to collapse at the supermarket once in every 12 grocery shoppings. Late last year just before I got the wheelchair, that had gone to once every 3 shopping trips. Now I need the wheelchair every time I go out shopping as I would probably collapse and would need an ambulance most of the time if I didnt have it.

    I dont find it hard at all to judge if Im worsening, improving or stable if I compare things from 3-4 month periods. As ME is so up and down anyway, I dont think one can tell if one has an altered ME baseline in one month from the previous month, it could just be an ongoing crash one isnt quite out of yet. I think longer time periods are needed for comparision as this illness is too fluctuating.

    I will be interested to hear how you go.
     
    Last edited: Jul 30, 2014
  13. taniaaust1

    taniaaust1

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    I are going to try to get hooked up with them, I did send them an email way but but as I cant keep tract of things and I have thousands of emails in my email, Ive no idea if they ever responded back to me or not. (Im just not very capable of following up things as I have too much Im trying to sort out and very little ability to be doing it).

    So Im going to next time I get to my GP (whenever that is, I have no way of getting back and she's now gone on holiday for a month). Im going to ask her if she can hook up into them for advice etc.

    I hope they wont expect everyone who goes to them to be using this smartphone thing (I know it would highly stress me trying to work out the ratings etc) and I dont have an iphone either.

    Yeah doctors not talking to each other is a big issue in Australia too and one which has greatly impacted on me.

    I had no doctor at all coordinating all my care, the GPs wanted a CFS specialist to do it and the CFS specialists wanted the GP to do it. So I was left in a hole. This caused a situation in which NONE OF THEM (and I was under lots of different specialists) knew even all the things wrong with me or what was going on with any of the others with me. Note one of them would of been able to do an accurate report on my health situation due to just knowing about their own specialist area with me.

    This also meant cause I had no main care person, that everytime I ended up in hospital, that their letter would only go to one doctor only or I didnt know where to get it sent too. So my doctors werent even knowing when I'd ended up in hospital and then some wouldnt believe me that I had due to "I never got a letter from the hospital? they would of sent one.

    So then I wasnt believed by my CFS specialist! (hospital told me they can only send one letter out to a doctor and wouldnt give me the letter so had proof. The hospital just didnt understand how this was being a huge issue for me).

    Fortunately the GP I have now (first in all the years Ive been unwell) doesnt seem to mind coordinating things between my doctors etc so I now can use her as a base which would be working well if I could get to her!

    Yeah but if I can get hooked in with that new service, it will be a good case to see how good or not that new service is and how it works (esp since Im in a different state to them. Video linkup??? or would they just guide my doctor and help me by working throu her??).
     
    jimells likes this.
  14. taniaaust1

    taniaaust1

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    That's how I feel about it too, we dont need more studies based on a persons subjective views of their symptoms. The last research study I was in here in Adelaide, they did use subjective ratings but I was very happy as we also wore a pedimetre (or whatever they are called on the ankle, thou I wish we wore it longer due to the variability of this illness).

    As I was also wearing a BP monitoring at the time too, I pushed myself more then normal just to see what results would happen on that (I didnt want to waste a good opportunity to find out how I was doing since previous testing 7 years before). So my activity level recorded for this study time would of actually been higher then it is normally.
    .................

    I currently thou trust Griffiths enough to know the difference between "fatigue" and "ME/CFS" or ME, so I really hope the fatigue group dont end up in their research. I believe they use the canadian diagnostic criteria for their research things. (please correct me if Im wrong).

    OH. Have I misunderstood? Is this going to be available to everyone in the general public and have thier data lumped with the ME/CFS people who will be going throu Griffiths clinic and doing this to?
     
    Last edited: Jul 30, 2014
  15. taniaaust1

    taniaaust1

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    There is a huge gap there thou between that 80 and the 100 and different people describe "severe" pain differently so the definition needs the word severe left out of it. Surely there are good pain scales somewhere.

    I think using descriptions for how the pain is affecting someone is better when judging what is severe pain and what isnt. eg is one doing moaning they cant contain? (I often at times get to moaning pain), are they crying tears due to pain? or screaming in pain? (I made a hell of a racket when I really hurt my hip and ankle with a bad fall the other day, I couldnt be quiet at all, I wonder what my neighbours throu of my shrieks, I couldnt even speak with it). Then there is a further severness where the pain has caused a pass out.

    So there is at least four more different pain levels after the waking up from pain (which you put at 80). That would cause me to move the being woken up by pain, move it far more lower on your list. Cant use the pressure thing for a scale either as the pain may be internal where pressure on skin doesnt hurt it.


    0 no pain
    10 - a minor nuisance can be ignored
    20 - distracts me all the time but without causing any real problems in life (constant discomfort pain).
    30 - causes sufficient pain and distraction that I drop things, make mistakes at work, trouble getting to sleep
    40
    50 i am regularly woken from sleep by pain --- etc etc
    60
    70 moaning pain
    80 pain making one uncontrollably cry (has trouble talking)
    90 screaming pain (cant speak at all pain)
    100 - pain which has made one pass out.
    .........

    Im sure their must be proper pain rating scales thou.

    :) It was interesting for me to see where you put the waking up from pain compared to where I would (30 points lower). A good example of how differently people may rate things.
     
    Last edited: Jul 30, 2014
  16. Leopardtail

    Leopardtail Senior Member

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    that was just an 'off the cuff' example.. but yes these are the kinds of points we need to think about....

    exactly so 100 would be passing out with pain... the values are not so important as the ranking, and having top and bottom defined..
    we need both to be concrete and account for personality too - I for example cannot cry irrespective of level of pain...
    I might though be unable to sleep, or drop something

    There may well be some, but they must be more than 'pick a number' it's surprising how 'unscientific' scientists are...
     
  17. taniaaust1

    taniaaust1

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    Maybe you havent experienced the uncontrollably crying level of pain yet. What Im refering to can go beyond personality. (Im not one to openly cry a lot of the time, I have trouble crying but tears will go down my face if Im in enough pain for it). I can silently cry in this way pain (tears running down my face, ones eyes just seem to do their thing with the pain.

    One thing weird thou as if pain is so intense Im shrieking (eg when Ive "just" sprained an ankle or if one breaks a bone), its like the shock of that stops me from crying (I cant remember having tears with that pain but its probably cause I had no awareness of anything except the pain so wouldnt be aware if I have tears then).
     
    Last edited: Jul 30, 2014
  18. Leopardtail

    Leopardtail Senior Member

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    I don't produce tears, ever.... not with pain so bad my heart gets into trouble....
     
  19. taniaaust1

    taniaaust1

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    oh okay.
     
  20. Dr.Patient

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

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    I think everybody should develop their own scales on different symptoms, and rate them. ( which a lot of patients are doing already). The goal here is to see if over time, things are getting better or worse or the same. I'm not sure if a stringent scale would apply universally. People should be willing to somewhat "average" out their symptom rating if they all want to use a universal scale.
     

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