1. Guest, the 'News in Brief' for the week beginning 16th January 2023 is here.
    Dismiss Notice
  2. Welcome! To read the Core Purpose and Values of our forum, click here.
    Dismiss Notice

LTSE - Long Term Symptom Exacerbation - Type 2 ME or New Diagnosis?

Discussion in 'General ME/CFS discussion' started by DigitalDrifter, Jun 2, 2022.

?

How should we label those with LTSE?

  1. Type 2 ME

    0 vote(s)
    0.0%
  2. SEID

    0 vote(s)
    0.0%
  3. New diagnosis

    0 vote(s)
    0.0%
  4. Bundle them with regular ME

    15 vote(s)
    93.8%
  5. Not sure

    1 vote(s)
    6.3%
  6. Other

    0 vote(s)
    0.0%
  1. DigitalDrifter

    DigitalDrifter Senior Member (Voting Rights)

    Messages:
    746
    In addition to what I posted here (https://www.s4me.info/threads/a-thr...how-you-cope-with-it.25333/page-2#post-421722), I think people who experience LTSE deserve a different diagnosis. I define LTSE as symptom exacerbation lasting months, years, or indefinitely.

    At the moment everybody is bundled in to one label which causes harmful confusion, it is clearly not working. Most of the medical profession (and the general public) don't think ME is a progressive illness with long term harm from exercise.

    I propose that we label these patients as having type 2 ME, but I'm wondering if you think a separate diagnosis is warranted.
     
    DokaGirl likes this.
  2. Peter Trewhitt

    Peter Trewhitt Senior Member (Voting Rights)

    Messages:
    3,064
    I will need to think about this, but I am not sure I understand the point here.

    Do we know that there are people with ME that do/would not experience Long Term Symptom Exacerbation in at least some circumstances? I personally would see LTSE as an aspect of sustained or repeated PEM, and as such central to having ME.

    My ME has always been relapsing and remitting with an overall long term deterioration, such that relapses are sequentially worse and remissions are sequentially less. Though I can not be certain about causality, relapses are associated with increasing activity levels and remissions follow dramatic decreases in activity level.

    For me the only uncertainty is if people who have ongoing progressive ME are getting worse regardless of what they do or if their threshold for PEM is so low that it is impossible for them to exist without triggering ongoing PEM.

    [edited to correct LTSM to LTSE]
     
    Last edited: Jun 2, 2022
    Ariel, Ali, Tia and 15 others like this.
  3. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

    Messages:
    11,810
    Location:
    London, UK
    In what sense do you think that the current classification is not working?

    Long term deterioration is an accepted feature of the natural history of ME is some. One could call it progressive ME but as a clarification rather than a new category I think.

    If long term symptom exacerbation is intended to specifically imply a causation by something like exercise then the problem is that we have no idea to what extent individual episodes of exercise contribute to the long term progress in an individual. They may trigger another phase of deterioration but for all we know that might have been coming anyway.

    I don't see the advantage of lifting long term worsening, in either sense, out of the category of ME since it is a recognised feature and an important one. I can see the rationale for separating ME from self-limiting post-viral fatiguing illness but that is a bit different?
     
    Ariel, TrixieStix, merylg and 18 others like this.
  4. Mij

    Mij Senior Member (Voting Rights)

    Messages:
    6,661
    There are also comorbidities that develop over time (diagnosed or undiagnosed), diabetes, heart issues et. So there can be the existence of more than one disease or condition at the same time.
     
  5. TigerLilea

    TigerLilea Senior Member (Voting Rights)

    Messages:
    1,770
    Location:
    Metro Vancouver, BC - Canada
    This poll doesn't make sense to me. We have long-term symptom exacerbation. That is what ME is.
     
    Tia, oldtimer, mango and 8 others like this.
  6. TigerLilea

    TigerLilea Senior Member (Voting Rights)

    Messages:
    1,770
    Location:
    Metro Vancouver, BC - Canada
    We are bundled into one label because medical science hasn't yet figured out what ME is or how to treat or cure it. It's already confusing enough having different names for the same condition without adding more names or sub-categories.
     
    Ariel, oldtimer, Hutan and 10 others like this.
  7. DigitalDrifter

    DigitalDrifter Senior Member (Voting Rights)

    Messages:
    746
    Name me one published paper that defines ME that way, as damage from exercise that last months or years.
     
    Peter Trewhitt likes this.
  8. Mij

    Mij Senior Member (Voting Rights)

    Messages:
    6,661
    I'm not sure 'damage' is the right term? I'm referring to PEM, it might be reversible, at least that's what I'm hoping.
     
  9. TigerLilea

    TigerLilea Senior Member (Voting Rights)

    Messages:
    1,770
    Location:
    Metro Vancouver, BC - Canada
    I never said anything about "damage from exercise that last months or years". My ME did not start from exercise. Mine started after taking antibiotics for a tooth infection (a tooth infection that resulted in me having a cold for six months before the cause of the long term cold was discovered).
     
    alktipping likes this.
  10. Trish

    Trish Moderator Staff Member

    Messages:
    44,448
    Location:
    UK
    @DigitalDrifter, would you be able to explain a bit more what you mean by 'damage from exercise that lasts months or years' and how that might be different from deterioration over time in ME, with episodes of PEM occurring after activity?
     
    alktipping, Barry, Mithriel and 3 others like this.
  11. DigitalDrifter

    DigitalDrifter Senior Member (Voting Rights)

    Messages:
    746
    alktipping, Peter Trewhitt and Trish like this.
  12. DigitalDrifter

    DigitalDrifter Senior Member (Voting Rights)

    Messages:
    746
    Ramsey's original definition of muscle fatiguability doesn't include LTSE. I believe he wrote that full muscle power was restored after 3 days. That excludes many of us so I think we deserve a separate diagnosis to be believe.
     
    Peter Trewhitt likes this.
  13. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

    Messages:
    11,810
    Location:
    London, UK
    If the desire is to have categories used by health care professionals that recognise patients' problems then Ramsay is not relevant since health care professionals no longer base their diagnosis on his description. They recognise long term deterioration.
     
  14. DigitalDrifter

    DigitalDrifter Senior Member (Voting Rights)

    Messages:
    746
    What planet are you talking about because it's clearly not earth? I was treated like a delusional hypochondriac for saying exercise caused long term deterioration, they locked me up in a mental institution and told me I wasn't in any pain. All my medical professionals, social workers, family, most of my carers have refused to believe my deterioration is real.
     
  15. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

    Messages:
    11,810
    Location:
    London, UK
    I realise that a lot of PWME get treated a hypochondriac but the literature on ME/CFS documents long term worsening in a significant proportion.

    If you are talking specifically about exercise causing long term deterioration that is a different matter and something we do not have any reliable evidence about. Since it is impossible to prove in an individual case it is not a useful basis for classification. But even so, the NICE committee recognised the weight of evidence for harm from GET - although inconclusive, strong enough prima facie to influence recommendations.
     
  16. Trish

    Trish Moderator Staff Member

    Messages:
    44,448
    Location:
    UK
    Digital Drifter, I am very sorry you have had such awful treatment from clinicians who clearly did not understand ME/CFS.

    Definitions and clinical criteria for diagnosing ME/CFS do include long term deterioration happening to some patients. All definitions require significant and ongoing reduction in function of at least 50% in their description of fatigue for mild ME, and much greater reduction in function at greater severity levels.

    Descriptions of PEM are based on further loss of function and increase in symptoms following activity, and the description does include this worsening going on long term without return to previous level - all the things you describe including long term lowering of PEM threshold level.

    The quote from Ramsay of recovery from PEM after 3 days is not a part of any currently used definition of ME as far as I know. Even in mild ME if someone returns to their previous level after a few days of PEM, that's not recovery.

    I don't think what is being described here is a different condition from ME. It seems to me to be a description of very severe ME with the threshold so low that the person is in ongoing PEM.
     
    DokaGirl, Hutan, Ariel and 8 others like this.
  17. TigerLilea

    TigerLilea Senior Member (Voting Rights)

    Messages:
    1,770
    Location:
    Metro Vancouver, BC - Canada
    @DigitalDrifter I'm sorry to hear that you were put through this. This certainly hasn't been my experience with dealing with doctors here in BC. I've only ever encountered two doctors that claimed that ME was either psychological or depression and both of those doctors were British trained doctors who immigrated to Canada. The one doctor didn't even last here a year before she left. ME is not considered mental illness, and even if it were, it is very hard to commit someone to a psych ward. You either have to be suicidal or considered a risk to other people and even then a lot of people get turned away. Britain must have an abundance of psych beds judging by the number of people with ME who gets committed for no other reason than having ME.
     
  18. JemPD

    JemPD Senior Member (Voting Rights)

    Messages:
    2,997
    beds are incredibly ltd which is why its even more egregious than 'just' the harm done to the PwME.

    I think the problem is that your average doctor in UK does not have any idea that ME/CFS is more than feeling very tired/aches & pains & mood disturbance. This is why when people get very severe they are assumed to be delusionally causing themselves harm by resting (becasue their delusion tells them to) - which causes worse deconditioning

    & therefore the drs think they are helping by not enabling said delusion, and sometimes by forcibly removing them to a place where their delusion can be treated or at least not enabled - Lest the patient seriously harm themselves (unintentionally) by confining themselves to bed when they dont actually need to be there.

    Its a *_______* outrage that you were treated that way Digital Drifter! and i can totally understand the desire for a different dx. But i dont think it will work because long term worsening as an (assumed) result of over-exertion is a recognised thing in ME and many people report it. Drs often dont understand or believe it, but without a well recognised & unimpeachable biological finding, whatever the new dx or name for it was, wouldnt make Drs take it any more seriously. So it would be a waste of time.

    Its the pits
     
    Hutan, Ariel, alktipping and 5 others like this.
  19. DigitalDrifter

    DigitalDrifter Senior Member (Voting Rights)

    Messages:
    746
    Thanks.
    I prefer the word believe rather than understand.
    Which criteria are you referring to?
     
    Peter Trewhitt likes this.
  20. bobbler

    bobbler Senior Member (Voting Rights)

    Messages:
    1,077
    It's a weird set-up in the UK. There is a shortage. We hear of the police picking up some with mental health issues (not the ME sort of situation I don't think, but on news programmes) and them being stuck in police cells short-term.

    But because most psych beds nowadays are actually private hospitals/centres that NHS uses and I think CCGs (?) have contracts with (ie I believe I've heard in news that most of our mental health beds are now actually run by private providers here?) and there are a really small number of NHS-run beds, and because you sometimes hear of people (not ME specifically) going to places not appropriate for their condition or halfway across the country from their family (like kids many hours from their parents) - and technically each trust/authority has its own beds, I never fully know which/what they are referring to when they say shortage etc. Section would then compel 'somewhere to be found' (? I think).

    There are stories in the paper of people with autism coming through who have been sectioned like a decade ago on the basis of needing a certain type of care and instead ended up in the wrong type of place for the entire time not even getting that treatment - which makes me think that the section doesn't have to correspond to availability anyway (I don't know what the exact details are) etc.

    Another important thing is that hospitals here are really becoming A&E, routine ops, and a few key major illnesses. They are not set up for long stays (or short for certain conditions) anyway and really overwhelmed. There are no 'cottage hospital' type places really. Social care has shortages. So if you want to put someone somewhere to 'be looked after/over' you've few options whatever they have. GPs haven't really done home visits on any scale for many years and/as there is a shortage.

    The 'duty of care' responsibility sitting with them (a GP) by virtue of CCG guidelines, and with lack of options and knowledge - nothing they can do/don't know could make passing over responsibility to someone happy to claim they can 'help' seem desirable from a liability perspective

    In many areas as CCG guidelines didn't allow referals to specialists/clinics or required 'special applications' and such places could only take milder people anyway (one of which in my area was done in 2021 - backdated to 2020 as the last one was 2017 and they are supposed to be done every 3 years, but doesn't lapse until 2024 unless they update it based on whatever is covered by their 'significant developments').

    And yes all the 2007 and lingering mental health insinuations/ambiguities and 'false hope recovery stats' and 'treatment claims' for ME and the FND and other names seem to give more excuse on basis of 'own thoughts/behaviours/should recover', 'exercise avoidance anxiety' etc. I can see why if you are so severe that PEM from quite small exertions is often permanently worsening, and that going down hill is possible even if you are 'doing the right thing' you'd be concerned it was clear in guidance. But also that perhaps there are options/guidance written in for that circumstance to at least provide a 'if x do y' pathway/reassurance/back-cover if a GP left with responsibility for managing someone might panic.
     
    Last edited: Jun 5, 2022

Share This Page