1. Sign our petition calling on Cochrane to withdraw their review of Exercise Therapy for CFS here.
    Dismiss Notice
  2. Guest, the 'News in Brief' for the week beginning 18th March 2024 is here.
    Dismiss Notice
  3. Welcome! To read the Core Purpose and Values of our forum, click here.
    Dismiss Notice

Why are the majority of pwME rarely mentioned?

Discussion in 'General Advocacy Discussions' started by Sly Saint, Jan 18, 2019.

  1. DigitalDrifter

    DigitalDrifter Senior Member (Voting Rights)

    Messages:
    885
    I'm switching care company tomorrow, I asked two of my current carers why they didn't believe how severe my ME is, they said they know people with my condition that work, you just have to push through it. They said I could be out driving if I wanted to which I find especially insulting because driving caused me permanent worsening even back in 2008 when I was less severe.

    I definitely feel under-represented.
     
    Lou B Lou, Irina66, mango and 16 others like this.
  2. Trish

    Trish Moderator Staff Member

    Messages:
    51,871
    Location:
    UK
    That is appalling, @DigitalDrifter. I had one like that. She told me also that ME isn't real like MS. I sacked her and told her why, saying as a carer she is not a medical expert and should not be saying things like that to her clients.
    I hope the new care company are better. It might be helpful if they were obliged to read some authoritative document like the NICE guideline.
     
    Lou B Lou, Starlight, rainy and 10 others like this.
  3. bobbler

    bobbler Senior Member (Voting Rights)

    Messages:
    2,315

    It's an interesting but important one to workshop isn't it. You can have severe tonsilitis (assuming that they go by look of the tonsils) and/or be 'very ill with tonsilitis' (where it might be about systemic aspects of symptoms and/or whether someone was already under the weather when they got it). A coldsore can get into someone's immune system and become life-threatening level of illness. People sort of know that running a marathon when they have flu is a bad idea but don't get as far as quantifying what happens - but really that is what ME basically is. They know (even before covid) that if someone has another serious illness or is old or ill then giving them a cold or flu (and a long list of other things) isn't a great idea.

    What Laypersons don't get it that very severe ME is unbelieveable level of ill health you don't know how people get out of. Severe level is extreme limitations - to the point it is on a good week you can have 2hrs to plan 'something you need or want to do' with, if you are lucky (noone else creates noise or problems, no bugs,injuries), don't have PEM from a previous week, and cut-back the energy to do the essential to life/must-dos to a minimum/well-oiled machine. People could not imagine the lack of lee-way you have. But a lot of the time you are only one incident from the ever declining to very severe.

    Moderate is debilitation they might begin to understand as severe illness and disability - ie near the severe illness they've never had but can sort of imagine and less 'crisis' mode and more 'disability' level, rather than 'what on earth are you doing out of bed'. It should be cross-matched to another illness + its level to give people a benchmark. This is the one they might encounter in adjustments and people 'outside the home' (the idea people should exercise is hilarious) and needs to be mapped to certain other serious illnesses that might or might not be able to do a tiny bit of the right sort of part-time work if under the right circumstances, flexible and very adjusted for. These are the typeof adjustments most people would only encounter or think needed for 'time-limited' e.g. when x is in the acute stage before good treatment is completed and recovered from.

    Mild is think of your worst illness you've ever had as long as you 'had flu properly once' or 'glandular fever' and had to shower once when you weren't well enough and went white and thought uh oh, or were forced to attend an obligation 'to show your face' and how you felt afterwards. Or someone who has had something significant e.g. cancer and 'recovered' but been left with the hit of the illness+treatment on their body. It's a 'normal disability' level ie like having a serious illness or disability with normal-type (ie familiar) adjustments of the type they might be used to for other conditions that are long-term. But significant ones. Not a kid just being let off sport (or worse 'the most sporty of the sport') but needing adjustments round their envelope.

    BUT it's all 'illness' where anything, done by yourself, others or nothing can make it go downhill through these stages - which is the difference between the 'rehab' or 'debility-only' one-dimensional framing that BPS wants to keep it in. It isn't 'chronic fatigue' but has PEM, crashes and relapses and progressions - to things that people can't avoid and should assume a medical profession would see as serious and not minimise being unable to do without risk and harm as not a problem. It should be reasonably to complain if you can no longer hoover or go round a supermarket or do a birthday party without being ill for a fortnight.

    The continue wish to 'frame' as rehab stage rather than an illness that for some reason no treatment has been looked into that is 'just one x away from getting worse', actually really ill but people start to try and do things because it has been so long they have to, is a real problem. It should be described as 'permanent flu' (instead of the silly 'flu-like' or 'malaise') and described as those severities so that people get some sort of better gist and give their head a wobble when they start suggesting a severe person just motivates themselves or tries exercise or whatever.
     
    Last edited: Mar 25, 2022
  4. bobbler

    bobbler Senior Member (Voting Rights)

    Messages:
    2,315
    Indeed, but I think that was used as an excuse to keep those who look for actual treatments out of their patch.

    Yep that was the most poisonous bit - which is why the NHS still won't write it out and they tried to argue for it in the round table. In a system based on rationing I assume it is done to remove any urgency or importance. 'this one can be left'.

    I think we need an independent (ie not any of the organisations and systems that would use this at any point to do harm) register/census, so that people can be sure their data is kept utterly securely private, and can report their illness profession factually. The fact these stats do not exist and are not accurate says everything about what has been going on for the last few years.
     
    alktipping and Peter Trewhitt like this.
  5. bobbler

    bobbler Senior Member (Voting Rights)

    Messages:
    2,315

    And they are talking tosh. Is someone better off over the long-term trying to get a career/money/qualifications at the risk of being sicker vs destitution and few choices leading to situations that make them sicker if they are young? What about the impact of a youngster reasonably thinking they need some life rather than it passing them by reasonably assuming that in the space of decades the system would sort themselves out and fund looking into the illness.

    None of them can answer anyone's real-life situation, just spout-out pat mandates regarding 'pacing' on simplistic one-dimensional situations (which isn't a treatment or management strategy it's telling people to just live with their debility in actual fact and accept it - not 'advice' thanks, we do all the work, and any other debilitating illness it is adjustments and support not 'lectures' on how to micromanage our lives from a naive person without it). They'd just get stressed if you actually have to say 'well when you suggest that add in the following 5 competing complications and outcomes from what you've suggested and give me the correct answer'. So their 'help' is just belitting and minimisation in itself.

    I can't even come up with the right dismissive terms to call the people who sit there thinking telling a load of predominantly female youngsters that 'if they just accepted it and behaved right' whilst they don't even back-up making sure those that surround them do and they have support. Don't expect us to try to find anything that helps, why would you make us feel like we might need to this is awkward - it is just weird they have thought this is OK for so long.

    And it isn't that invisible - as soon as it affects them e.g. people in relationships then they sure see it. People are just too self-involved with whatever they are up to and themselves to acknowledge. I remember one of the more stunning 'invisible/hiding it' moments was when a colleague on the same level as myself who didn't know about my illness or really my other colleague's trying to 'co-opt me' with a quiet word suggesting that the colleague who had ME and had lost her voice completely 'maybe had hysterical voice loss from stress, and was asking me because I'd done a psychology degree'. Goodness knows what she was actually trying to achieve with that, but it certainly wasn't genuine concern.

    What they mean by invisible is not a deformed wrist to prove. You can be falling over with exhaustion and if it suits the person you are with they will not see it in order to send you on an errand. The issue is that rather than a provable, objective 'can't' when you are well enough to leave the home it is 'this will damage me' and the individual you say it to can make sure they are either not there to observe that consequence or pretend it isn't that bad etc. Because noone even bothered to by this point find a way of measuring it.
     
    alktipping and Peter Trewhitt like this.
  6. Hoopoe

    Hoopoe Senior Member (Voting Rights)

    Messages:
    5,234
    I have the impression that the more severely ill patients don't always understand the patients like me who are less affected. They seem to think there is nothing between their level of severity and being able to function normally but with fatigue, when there is actually a lot inbetween.
     
  7. Trish

    Trish Moderator Staff Member

    Messages:
    51,871
    Location:
    UK
    I wonder whether that's common. I haven't come across it I don't think. After all, I would assume most very severely ill people with ME themselves experienced different severity levels before their disease became very severe.
     
    Irina66, mango, AliceLily and 4 others like this.
  8. bobbler

    bobbler Senior Member (Voting Rights)

    Messages:
    2,315
    Of course the thing is that it has been easier to hide misdiagnosed people who benefit from GET or whatnot under 'mild' than it is under severe. You are correct that if you were looking at real treatments/the thick of things then the more severe would, you think, have the more stark findings. But also the more risk ethically.

    It is a pretty major issue for ME research that science really should start with good observation then hypotheses. Much of the evidence-based medicine stuff seems to have incentivised skipping this bit into dodgy hypotheses applying straight for trials with inference. The fact that clinics got run by people with no biomedical expertise, interest, or indeed position in order to have any weight to input into the science - be that research directly, guidelines or case studies based on proper observation and good statistics/surveying of the illness is the second factor.

    That you hear so many people trying to skip sorting out the second one properly is beyond disconcerting. Those who are severe do need the offer of hospice or recuperation accommodation where they are safe from dodgy ideologies, and home visits - just so that they exist in the literature - as well as basic human decency obligations. Is refusing to have any 'new service' that would cater well for them (given GPs clearly aren't positioned to have this dumped on them in the general) part of the minimisation/disappearance strategy.

    They don't have to be trying new treatments to have some decent physicians doing Oliver Sachs type (not BPS write a fake story that anyone who knows the patient wouldn't recognise but makes for a nice pop-fiction) case studies. But both of these ends of the illness and those who are severe being recognised have been neglected. And paients basically have to hide most of the time because any options they'd be sent to risk if they pushed to far would be risking their own health further.

    None or very few of us at any level probably have half-decent accurate longitudinal medical histories because of the politics and way even good support is spread so thin. So it would be more accurae to have us all describing our own from what we remember and any tests than taking the notes that have been made by others for whaever reason given the agendas and power issues etc. That is hardly a base to begin planning research from either. How did/what base did MS begin its research from or another similar illness that has moved forward over the years?

    There seems a lot of more 'paper-based stuff' that would harm noone that could be done without the ethics/damage issue that funding and lack of will from above is the real issue for. Without even this then those who are attempting to work out where to start and if there are types etc have a particularly difficult job unnecessarily? We can't even be sure how many actually have it nevermind the level in what country, nevermind what worked and what progression patterns occur?
     
    Amw66, alktipping, Alis and 1 other person like this.
  9. bobbler

    bobbler Senior Member (Voting Rights)

    Messages:
    2,315

    And there is the crux - to say that you have to give up work and aggressively rest (which is what you actually have to do with 'pacing' no matter how deceptive the term and its description is) and never do any activity the same ever again in your life is a 'management strategy' rather than a 'tragedy' which is what it would be if someone in their 20s had to do this with any other illness and wasn't given any treatment or even medical care that might provide some help (not just painkillers or sleeping tablets but try the things that in history might have helped some as we've all read about) is shocking.

    And to put them in a situation where getting support for that decision isn't made easy or often possible means they might 'advise pacing' whilst with the same hadn 'making it impossible'. They've created a world where unless you have some other fortune intervening if you get it young every path of the decision chart leads to poverty and very bad health - probably with no support from anyone at some point, because parents die, spouses leave, friends leave or get fed up all instigated by the very same system not backing the word of the individuals, inferring doubt and providing little support for those who might eventually 'have to save themselves from getting dragged down'.

    The lack of logging progression isn't, I doubt, accidental. Who cares whether the reason is arrogant presumption, lack of care - the combination of the two reinforcing each other, or some people being quite deiberate about it not happenning combined with various systems that for some reason don't do it automatically yet do log extensive notes on minutiae or opinion strangely.
     
    Last edited: Mar 25, 2022
  10. bobbler

    bobbler Senior Member (Voting Rights)

    Messages:
    2,315
    And when I read the 1993 DLA stuff then the household tasks went out the window basically for my whole life whilst work was the last thing, going through the wfh, adapted hours etc. How many of us can think and type for a few minutes at a time but weilding a hoover - particularly for more than a handheld patch if you spilt something - would be a joke. I mean that could be a biomarker in itself

    I don't think internet supermarket delivery existed then yet I spent 8yrs plus doing a job whilst having to have deliveries after I collapsed in enough supermarkets trying to do a proper shop (walking in the door to get one item on a good day is a bit of a different kettle of fish).
     
  11. AliceLily

    AliceLily Senior Member (Voting Rights)

    Messages:
    1,734
    When I look back at my early years of ME when I didn't know it was ME, I am often puzzled at how I managed to work full time. I knew something was wrong with me, the unusual exhaustion, feeling fluish, I could no longer study because it was taking longer to absorb information and I'd wake up the next morning having forgotten a lot of what I had learnt. I was very concerned about all these changes but I had to keep on trying to function as normal. So for some years I was able to work, but I sped quickly to very severe ME in 6 years. Looking back, if I had known I had ME I should have quit my job and rested, plus reassess what I could manage and learn how to manage this illness from that point.

    I think from my own experience having gone through years of very severe and severe ME and having been on the tortuous rollercoaster of very severe PEM, we at this level of ME have PEM drilled into our being. The PEM at this level is very frightening. The PEM symptoms are intense and quite unbearable and there are many many more PEM symptoms than at moderate and mild levels.

    So, to answer your thoughts about severer MEs not understanding levels like you experience, I would think most do and have been through those stages, it's just that we have also experienced the extremes of the ME PEM.
    I think I recall you asking questions about PEM in the past and asking if what you experienced was PEM? It is understandable to ask those questions in the earlier stages of ME because things aren't as clear as in the severer stages.

    I think we do always have to remember that the earlier stages of ME might not look like ME in that the PEM is not as pronounced. There are signs, but it's like a distant signal and not fully understood because the intensity hasn't yet been experienced frequently enough.
     
    bobbler, Ariel, Irina66 and 8 others like this.
  12. trudeschei

    trudeschei Established Member (Voting Rights)

    Messages:
    43
    Location:
    Holmsbu, Norway
    From the IOM report:

    "Symptoms can be severe enough to preclude patients from completing everyday tasks, and 25-29 percent of patients report being house- or bedbound by their symptoms. Many patients feel unable to meet their family responsibilities and report having to reduce their social activities (NIH, 2011). However, these data include only patients who were counted in clinics or research studies, and may underrepresent the extent of the problem by excluding those who are undiagnosed or unable to access health care (Wiborg et al., 2010). "

    If so, it seems really strange that such a large number of sarticles quote this number without either adding the caveats, or saying how they define severe.
     
  13. Sly Saint

    Sly Saint Senior Member (Voting Rights)

    Messages:
    9,574
    Location:
    UK
    There is another major problem with the use of mild,moderate, severe.

    In many instances in literature/articles from the USA they use the term 'moderate' in the same way 'mild' is used in the UK.; adding to the notion that most ME patients are only 'mildly' affected (ie can work and/or socialise but need to rest more) or severe ie bedridden.
     

Share This Page