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What do we want ME care to look like?

Discussion in 'General Advocacy Discussions' started by Hutan, Aug 30, 2018.

  1. Hutan

    Hutan Moderator Staff Member

    Aotearoa New Zealand
    Having read the drivel that is BACME's guidance on Therapy and Symptom Management in ME, the document that AfME seems to be pointing to as best practice, I'm wondering if we have been clear enough about what care we actually do want. There seems to be an awful lot of effort and money spent on delivering care that is, at best, a waste of time. We don't need these patronising, costly and often dangerous programmes, programmes that have no good evidence of efficacy.

    What we need is a respectful service that does a really good job at screening us for other conditions and then 1. supports us and our carers; and 2. facilitates good research efforts.

    Obviously what is possible will differ according to the resources a country has to put to health care in general. My idea of what is reasonable in a developed nation with significant constraints on health care spending is:

    Diagnosis - referral to a specialist in ME (i.e. a curious smart specialist from a relevant biological field who reads the ME literature, attends ME conferences) for:
    1. a careful exclusion of other possible diagnoses. (It's worth spending the money here on a coordinated systematic exclusion process - many people will actually have treatable conditions and it saves us going to different doctors and having them repeat those same limited blood tests, over and over again.)
    2. Baseline data collected including, if the patient is well enough and willing, a 2 day CPET, at least to the point where anaerobic respiration starts.
    3. Addition to an ME patient registry and, where possible, an invitation to contribute to an ME biobank and opt to participate in trials.
    4. Identification of any treatable symptoms or co-morbidities such as depression, orthostatic intolerance, thyroid issues, and either treatment or referral for treatment. If referral, other medical practitioners should be familiar with the particular needs of ME patients.
    5. Letter to the patient's GP with a recommended approach for ongoing care
    6. Acknowledgement that ME is real and serious although poorly understood; acknowledgement that recovery rates after the first couple of years are poor at present
    7. Referral to a local ME nurse

    Early care - local ME nurse (able to make house visits for those who need them)
    1. Education on PEM, pacing and a healthy lifestyle within the constraints of the illness (a chat with pamphlets; provision of heart rate monitor; more support if requested)
    2. Letters to school or work; more liaison with school or work if needed e.g. arrangement of home/online tuition
    3. Assistance with getting any government benefits that may apply, getting disabled parking
    4. Invitations to relevant local support groups (for patient and carers) and a list of online resources

    Ongoing care - appointments can be home visits/skype visits if needed
    1. Annual visit to the ME specialist, mostly to just check in, update records and for the patient to be updated on latest theories, unless scientific advances suggest new tests or treatments. For severe patients, more regular appointments as required.
    2. Appointments with the ME nurse on a schedule appropriate to the wishes and needs of the patient (and carer) but generally at least once a year. Services provided might include advice on mobility aids, arrangement of more home care services, advice on coping with symptoms/ advice to caregivers, monitoring for symptoms that require referral for evaluation and care, assistance with education or work issues.
    3. Phone line staffed by an ME nurse, available to discuss ME related issues
    4. Both the ME specialist and the ME nurse keep each other, and the patient's GP, informed.
    Last edited: Aug 31, 2018
    dangermouse, RoseE, TiredSam and 29 others like this.
  2. Alvin

    Alvin Senior Member (Voting Rights)

    It would be interesting to write up our own ME care guide.
    There are probably many out there already but if none are as good as what we could write then it would be worth pursuing.
  3. Trish

    Trish Moderator Staff Member

    That looks pretty good, @Hutan. In my area there are specialist nurses for other chronic physical diseases such as Parkinson's, asthma/COPD and diabetes. They are under the supervision of the relevant consultant and are kept up to date on treatment changes and can make prescription recommendations to the patient's GP. They are much more accessible to patients than the consultant and can do home visits.

    That seems a good existing model to base ME care on. Annual visits to the consultant to check for changes that need further investigation and to review treatment, with a combination of GP and specialist nurse for ongoing advice when needed.

    The consultant focus would be on careful differential diagnosis and oversight of symptomatic treatments and annual reviews and ordering any further investigations.

    The nurse helps patients learn about pacing and monitoring symptoms and making adjustments to daily life and getting the care needed and monitors these and any symptomatic treatments and can advise on adjustments to these.

    The GP prescribes and does all the usual GP care.

    The whole therapist based edifice for ME should be shut down.

    I think the fact that such a model already exists for other conditions should make it easy for us to explain our preferred model of care to health providers. I also think it would end up costing no more, probably less in the long run as the harm from GET is avoided.
  4. Trish

    Trish Moderator Staff Member

    I think the ME charities should be pushing for this model of care. In the UK that would mean @Action for M.E. and the MEA (@Russell Fleming) producing a joint effort on it.
  5. Webdog

    Webdog Senior Member (Voting Rights)

    Holodeck #2
    I don't want to sidetrack this thread, but this is a very different model from what the CDC in the United States proposes.

    In the CDC model, there is no ME specialist or ME nurse. The primary care doctor is at the center of diagnosis, development and implementation of a treatment plan, as well as ongoing modifications to treatment. The primary care doctor also refers out to specialists as needed.

    CDC makes a brief mention of home care for severe patients.

    I am concerned that in the CDC model, primary doctors won't have sufficient time or sufficient training to provide complete ME/CFS care. But it's better than what is currently being offered by most healthcare plans.

    PS: Excellent writeup @Hutan. It's certainly got me thinking about how to improve clincal care.
  6. NelliePledge

    NelliePledge Moderator Staff Member

    UK West Midlands
    What does CDC have for MS or Parkinson’s @Webdog? it seems to me a good way of arguing for further change from CDC as with NICE to get past the issue of there being no specific medication and point out there should be equivalent levels of support for management of the illness to other chronic illnesses.

    Great summary @Hutan i know from a friend who has cancer how useful having a specialist nurse is. With the right training they could be really helpful as someone to talk to understand what new symptoms need following up, and whether likely to be ME or something else. Would cut down on barriers to raising new symptoms where some peoples GPs are good and others get the brush off.

    ETA @arewenearlythereyet my friend who has cancer is generally physically well, currently actually probably doing better than me, can walk a lot futher gets out of the house and travels regularly is taking some medication to manage and although prognosis is that remission is not going to happen the disease is currently stable at minimum possible level. I don’t think we are in the same situation we are both chronically ill though and some elements of what’s there for her should be there for me. Although some people with ME are as seriously ill as cancer patients so we should aspire for equivalent levels of management for those members of our community.
    Last edited: Aug 31, 2018
  7. arewenearlythereyet

    arewenearlythereyet Senior Member (Voting Rights)

    Good start. I think it would be worth getting a clearer idea of the provision (nice guidelines?) for other chronic conditions (ra, ms, Parkinson’s etc) and to look at progressive vs non progressive. This would give us references to refer to?

    I also think we shouldn’t directly compare our situation to cancer since this is not apples and apples (mainly from the mortality/recovery rate, treatments available and prevalence). It would also be good to get an idea of whether these services are well received or have problems with them by reviewing some of the specific forums ...nice guidelines don’t necessarily mean they are being carried out as per the guideline or that the guideline works.

    I would like to see a requirement for symptom monitoring. tools could be offered by the nurse (apps/diaries/help with symptom classification) and the results from these could be monitored by patient and gP every 3-6 months. Again quite cheap to implement but would help a lot (and currently blocked by it being perceived as ‘dwelling on symptoms”)
    janice, ladycatlover, RuthT and 8 others like this.
  8. Webdog

    Webdog Senior Member (Voting Rights)

    Holodeck #2
    The CDC doesn't have specific Multiple Sclerosis or Parkinson's sections listed in their "A – Z Index for ALL CDC Topics".


    PS: In the past, I've complained directly to my provider that ME/CFS patients should get the same level of specialist care that MS and Parkinson's patients routinely get. That ME/CFS patients should be able to see a doctor familiar with their disease, just like MS and Parkinson's patients routinely do. My complaint was denied.
    Last edited: Aug 31, 2018
  9. Suffolkres

    Suffolkres Senior Member (Voting Rights)

    Excellent simple Service Specification- and not too much to ask! Parity with other Neurological conditions like MS should be in the spec now ME is coded on Snowmed as a neuro condition for GPs.
    janice, ladycatlover, Hutan and 5 others like this.
  10. Siobhan

    Siobhan New Member

    If I could add one more resource to the care team I would want to make available, on a voluntary basis, a compassionate social worker to provide emotional support and advocacy around all the losses and and adjustments of a life turned upside down by M.E.

    It would be imperative that they be someone who understands the biological aspects of the illness and absolutely not be someone who buys into the somatization model.

    They could could provide support to the person with M.E. and their significant others as they adjust to changes in family roles. They could also help them cope with the challenges of stigma and ignorance within the person’s social network and develop strategies to advocate for respectful, competent care within the medical system.

    As a social worker and someone who lives with M.E. I am proud of the tradition within my profession of supporting people on the margins such as people with HIV and other stigmatized illnesses, people struggling with homelessness/poverty, people fleeing domestic abuse, survivors of sexual abuse and many others who were historically stigmatized, disbelieved and abandoned by mainstream medical professionals. I can tell you there are some really good social workers out there who would find these roles in caring for people with M.E. very meaningful.
    Last edited: Sep 1, 2018
  11. NelliePledge

    NelliePledge Moderator Staff Member

    UK West Midlands
    Yes I know someone on another forum who would definitely benefit from this support as reliant entirely on paid help and no family/friends support.
  12. Ravn

    Ravn Senior Member (Voting Rights)

    Aotearoa New Zealand
    Excellent work @Hutan. Sadly your very reasonable suggestions go soooo far beyond what's currently offered where I live it's not funny.

    Yet I would like to see even more, at least for severe patients.

    Home/Skype visits by specialist ME staff should of course be a must. Additionally doctors should do home/Skype visits for any non-ME issues for those unfortunates hit by more than one illness. That your appointment is for arthritis rather than ME doesn't mean you won't magically not crash from the travel exertion.

    Where travel to a specialist center or hospital is unavoidable, say for cancer treatment, suitable transport should be offered, e.g. ambulance transport for those prone to crashing from OI. Followed by suitable – quiet – accommodation at the destination where staff know how to deal with ME patients.

    And, while we're dreaming, why not a mobile dental and eye care service as well?

    All of which may cost more short term but would help prevent more serious - and even more costly - complications later.
  13. Hutan

    Hutan Moderator Staff Member

    Aotearoa New Zealand
    Really good suggestions @Ravn.

    With an ageing population, we aren't the only group that has difficulty travelling to medical services. Mobile dental and eye care services would benefit many people.
  14. Trish

    Trish Moderator Staff Member

    I only discovered I could have access to a home visiting optician by chance (my daughter saw an advertisement). That was after I'd been wearing the same pair of glasses for about 15 years! The service was excellent.

    I have no idea whether there is a visiting dental service, and if so whether I would be eligible. I have a tooth with a filling missing and I'm dreading having to go and get it fixed. The worst bit is having to sit in the waiting room, usually for about an hour, before I see the dentist. Lying down on his dental chair for treatment is a relief!
  15. Barry

    Barry Senior Member (Voting Rights)

    "What do we want ME care to look like?"

  16. Samuel

    Samuel Senior Member (Voting Rights)

    what follows is forum splatter. i am not up to a real post.


    good point. we can make positive statements about what is
    needed. we don't have to just fight bad things.

    instead of playing whack-a-mole, by showing what is needed
    we even SHOW that the entire frame of reference is wrong.

    we can get across the reality of what is needed.


    for what it is worth, i can say one thing for sure that's
    not often mentioned:

    the needs of bedridden and housebound are completely
    unnoticed in many cases. i have absolutely no doubt that
    many pwme have gotten sicker (from mild), become bedridden,
    and died NOT solely because of m.e., but because they had
    nobody to do basic things for them that they could not do.
    including even finding out what services are available.

    or because there were no services.

    you fall through the cracks because you have m.e., and then
    fall through deeper because you are severe, and then fall
    through deeper again because you have multiple health issues
    and comorbidities that prevent ability to do things further.

    and then fall through again because they interact with one
    another, and then fall through again because they are in
    their own right serious, and then fall through again because
    some of them are "weird".

    and then fall through again because nobody cares.

    and then fall though again because those cracks are
    completely unrecognized, even in the best outward-facing
    channels-of-power-using advocacy the community has ever been
    able to accomplish.


    so what kind of thing can the community present to those who
    are in a position to do something (like members of
    parliament and senators and agency or ministry heads)?

    one thing some technical types do is talk about USE
    CASES. they define representative people+goal,
    and analyze whether they have met those needs.

    we could do the same, but ensure we are really showing our
    use cases accurately and including the ones with the most
    needs, in addition to the most common ones.


    to make this concrete, imagine:

    1) whitney dafoe
    2) whitney dafoe, without a family that believes him
    3) whitney dafoe, without a family that is there for him
    4) whitney dafoe, without a family of means
    5) whitney dafoe, without a family
    6) whitney dafoe, without anybody to find out about services
    7) whitney dafoe, without anybody to deal with bureaucracy
    8) whitney dafoe, without anybody to deal with finances
    9) whitney dafoe, without anybody to talk to medical
    10) whitney dafoe, without anybody to maintain his medical
    11) whitney dafoe, without medical care
    12) whitney dafoe, without dental care
    13) whitney dafoe, without vision care
    14) whitney dafoe, without sufficient nursing care
    15) whitney dafoe, without specialists in his COMORBIDITIES
    16) whitney dafoe, without specialists in his
    comorbidities WHO CAN MAKE HOUSE CALLS
    17) whitney dafoe, without specialists in his
    comorbidities who understand that he has MORE THAN ONE
    18) whitney dafoe, without cooking and cleaning services
    19) whitney dafoe, without people to bring him food
    20) whitney dafoe, without people to bring him medicine
    21) whitney dafoe, without people WHO UNDERSTAND HIS NEEDS
    22) whitney dafoe, without people who understand his MANY
    23) whitney dafoe (who cannot use skype)
    24) whitney dafoe, without respect
    25) whitney dafoe, without a smart scientist father who
    silently sits outside the door until whitney sits up,
    careful not to trigger whitney's social-reasoning
    neurons and thus cause him to get sicker, and uses
    that time to figure out why whitney is sick.

    of course not saying whitney is fortunate. saying there are
    many people who fit the above use cases.


    if any people who are responsible for pwme has any use case
    in mind, it is probably something like "gets tired at work
    and can't socialize as much as wants to".

    also "has to put head on hand at dinner gatherings".

    those are use cases too in principle. THE MILDEST SUFFERER DESERVES TO
    BE PART OF THE COMMUNITY and recognized for needs too. also
    unusual sufferers. they belong.

    and a mild sufferer is one exposure away from becoming severe.


    but let's not forget the /above/ use cases, because they go
    unnoticed. and because the needs are life-threatening.

    if not for whitney's family, we would not be hearing about
    him on this forum. or thinking about his needs much. (see my signature.)

    he cannot be on the forum. this is a selection/availability
    bias. so we don't think about or know his needs.


    the natural inclination of agency heads is to forget him.
    regardless of the constraints of the interview, francis
    collins was astounded that people could be bedridden for
    "weeks". he was told (including in an open letter from me),
    but probably put it out of his mind immediately.

    which means we have a lot of work to do.


    so what do we need? imo what we need is a powerful and
    accelerating social movement [see bill moyer movement action plan]. one or more that covers m.e., neglected chronic diseases, and misopathy. (idk yet
    in what combinatorics.)

    and we need to drill into people's heads that not every pwme
    wants to "live with their disability because society can
    accommodate it and they can do pacing and then they can live
    full lives". this disease needs not just accommodating, but
    all subsets and genotypes AND COMORBIDITY PATTERNS and
    symptom profiles.

    and get those fixes into people's bodies in reality and in
    real time not imaginary time. this will also mean PAYING
    FOR THE HARM THE AUTHORITIES CAUSED. including paying for
    that medicine if necessary no matter the cost. would you be
    using rituximab if that had not failed and were still on
    patent? not what payers want to hear but what needs
    to occur. there is no getting around it. hiding behind rules does not stop people from dying. rules will need to change faster than any bureaucrat will want. and, personal point: i need a mold-safe house. what's going to keep me alive?


    aids made rules change. aids has services: http://www.nytimes.com/1997/11/12/us/new-challenge-to-idea-that-aids-is-special.html .
    in venezuela they literally call it a genocide when there is a shortage of free antiretrovirals. they have power. (i do not recommend using the term genocide for m.e.. btw, i have unpublished posts from many years on genocide, the international community, and related topics. i recommend using the term misopathy.)


    we can and will have that kind of power if we work for it.

    i do not believe that most of us will improve without it. many will not survive without it.


    but mainly i wanted to say i like the idea of this thread.
    Last edited: Sep 3, 2018
    Chris, Keela Too, Skycloud and 4 others like this.
  17. Andy

    Andy Committee Member

    Hampshire, UK
    So one of the things that I've learnt from being in hospital is that the NHS gives patients injections to reduce the risk of blood clots due to inactivity - so far I've had two in the four and a bit days I've been here. I would of thought this is something that would be very appropriate for many, if not all, of the more severely affected patients out there.
  18. NelliePledge

    NelliePledge Moderator Staff Member

    UK West Midlands
    As it happens this person recently revealed that they’ve had issues with social services so person centred advocacy would be a huge improvement
    dangermouse, janice, Siobhan and 3 others like this.
  19. Webdog

    Webdog Senior Member (Voting Rights)

    Holodeck #2
    Not sure if this is right place for this, but was just communicating with a doctor (in the US) who wants to make heart rate monitors available for thousands of ME/CFS patients. The issue is that, depending on what insurance plan the person has, heart rate monitors may or may not be covered.

    So some patients might get heart rate monitors for free, while others would be required to purchase them. A real mess.

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