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What items/documents would you like to send to GPs/primary care physicians if you were doing a mail-out?

Discussion in 'General Advocacy Discussions' started by Dolphin, Apr 8, 2022.

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  1. NelliePledge

    NelliePledge Moderator Staff Member

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    I think it’s best to give a short one one or two sentence explanation what’s in the links to try to encourage people to click through.
     
    NelliePledge, Apr 8, 2022
    #21
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  2. Kitty

    Kitty Senior Member (Voting Rights)

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    Good point. I find it useful when a link is accompanied by an indication of how long the article is, e.g. "Five-minute read". Sometimes I get drawn into things by picking a short article first, and then if it's decent quality or interesting, I'll look at longer ones.
     
    Kitty, Apr 8, 2022
    #22
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  3. Milo

    Milo Senior Member (Voting Rights)

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    Drs are super busy and may not have much time to read much. Send tools- diagnostic criteria checklist (let's not get too political about which one) NASA Lean test procedure for POTS; diseases to rule out; disease management they can do and discuss with their patients (pacing, no exercise prescription); lest of resources that support these interventions- links to websites, scientific papers, organizations etc. (or paper mailings, include a QR code) Ideally a list of resources for professionals would be available on your website.
     
    Milo, Apr 10, 2022
    #23
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  4. Dolphin

    Dolphin Senior Member (Voting Rights)

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    Thanks.

    We sent various diagnostic criteria checklists in previous mail-outs.

    Here is one handout on the NASA Lean test procedure that could be included:

    https://batemanhornecenter.org/wp-c...-Lean-Test-Clinician-Instructions-06_2021.pdf

    Interesting about the QR codes.
     
    Dolphin, Apr 10, 2022
    #24
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  5. Wits_End

    Wits_End Senior Member (Voting Rights)

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    UK London
    This is what I sent to my caree's GP a year or two back:

    MEA Covid-19 vulnerability letter:
    https://meassociation.org.uk/2020/06/latest-free-leaflet-update-covid-19-coronavirus-and-me-cfs/

    The Coalition Guidelines, which can be found to the left under "Diagnostic and Management Guidance on Core Criteria" (there's actually a new version since the one I sent):
    https://batemanhornecenter.org/providers/about-me-cfs/

    Bested & Marshall, available here:
    https://www.degruyter.com/document/doi/10.1515/reveh-2015-0026/html

    The International Consensus Primer, which can be downloaded from the bottom of the page here:
    https://www.nhmrc.gov.au/health-adv...ncephalomyelitis-and-chronic-fatigue-syndrome
     
    Wits_End, Apr 16, 2022
    #25
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  6. Dolphin

    Dolphin Senior Member (Voting Rights)

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    I saw these recommended by somebody for this purpose today so thought I would post them here so I can consider them when considering what we will include for our 2023 mail-out

    Caring for the Patient with Severe or Very Severe Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
    by Jose G. Montoya 1,Theresa G. Dowell 2,Amy E. Mooney 3,Mary E. Dimmock 4,* andLily Chu
    https://www.mdpi.com/2227-9032/9/10/1331

    Impact of Myalgic Encephalomyelitis on treatment of comorbidities: A lived experience
    Article type: Research Article
    Authors: Lopez-Majano, Denise
    https://content.iospress.com/articles/work/wor203175

    Documenting disability in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)
    Issue title: Special Section: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)
    Guest editors: Amy MooneyMS OTR/L
    Article type: Research Article
    Authors: Podell, Richarda; * | Dimmock, Mary E.b | Comerford, Barbara B.c
    https://content.iospress.com/articles/work/wor203178
     
    Dolphin, Sep 22, 2022
    #26
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  7. Samuel

    Samuel Senior Member (Voting Rights)

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    i have the problem trying to even scan part of this thread that i do with my notes from many years of saving links. with my sevre/extree executive dysfunction i cannot possibly organize them or figure out which to send.

    on top of that i can't read them to vet them. if i could, then i could provide short summary or so. but i am stuck once again with many many links and a complete inability to plan schedule execute organize decide.prioritize send follow up.
     
    Samuel, Sep 23, 2022
    #27
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  8. Arnie Pye

    Arnie Pye Senior Member (Voting Rights)

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    Arnie Pye, Sep 23, 2022
    #28
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  9. Dolphin

    Dolphin Senior Member (Voting Rights)

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    Another:
    Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome: What Every Family Physician Needs to Know
    By Mary Dimmock, Susan Levine, MD, and Terri L. Wilder, MSW
    http://www.nysafp.org/NYSAFP/media/PDFs/Family Doctor/Family-Physician-Winter-2018WEB.pdf
     
    Dolphin, Sep 25, 2022
    #29
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  10. Hutan

    Hutan Moderator Staff Member

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    Aotearoa New Zealand
    It's brief and focused on the IOM findings. Given it was published in 2018, it's a bit old now, but the information is pretty solid. It has probably done a lot of good, being in the "Journal of the New York State Academy of Family Physicians"
    To be picky - because that is what we do here (and acknowledging that the authors have probably moved on in their thinking since 2018 - more recent material from the same authors might be better)
    Most of those ten thousand peer-reviewed articles are not worth the paper they are printed on. Even nearly 5 years, and a major ME/CFS-inducing global illness later, nothing much about the nature of ME/CFS is particularly clear yet. I don't think the argument that there have been a number of articles published is a good one when it comes to dismissing a psychogenic cause.


    Patients may also experience.....heart rate variability. Well, one would hope so, as it seems to be a feature of the human body. In fact diminished heart rate variability has been suggested to be a problem in ME/CFS. I don't think that elevated antibody titres to viruses necessarily means much in the context of ME/CFS, or that the anti-virals that are later suggested as treatments are useful for ME/CFS symptoms.


    While the second sentence is true, the wording makes the people sound unstable and unpredictable, rather than their symptoms. It's not needed, given the first sentence conveys the fluctuating nature of the disease.

    Perhaps the problem is my definition of severely disabled, but caring for people with ME/CFS with even a moderate level of disability can put a lot of strain on families. Even having a person with mild ME/CFS in the family is likely to require major adjustments and cause some hardship. 'Caretakers' sound a bit like people who make sure the school boiler is working, maybe that's a dialect thing, but carers seems better.

    I think the issue of recovery deserves a bit more of a discussion, as it is a key thing that patients and benefit assessors want to know from doctors. I think we can say, that information about recovery is limited but, based on studies including the Dubbo study, recovery rates are fairly good early in the disease. If we don't acknowledge that, then clinics can come across as miracle-workers with special knowledge when a patient recovers after a year of illness. However full recovery and even significant improvement is rare after two or three years. And quality of life can improve with time as the person with ME/CFS adjusts to the changed level of capacity.

    I don't think I'd single out sleep apnea as being of importance, and the issue of orthostatic intolerance can manifest in ways other than POTS.

    . I think this may be overstating the certainty we have around the 2-day CPET evidence. I think it is quite persuasive in terms of diagnosing ME/CFS, but I don't think we are sure about how a reduced work rate at anaerobic threshold relates to PEM. I know it's difficult, sounding authoritative to doctors, so they take ME/CFS seriously, while stepping around the huge amount of uncertainty that still remains. That applies to the mention of things like mast cell disturbances and "associated aerobic metabolism impairment".


    . This one is a common issue - it makes pacing sound all very technical and something that the patient needs detailed help with. But it avoids mentioning the major things - of the patient probably having to give up or greatly cut back on work or education, and needing support for household duties. Basically, the person needs to come to terms with doing less, and find ways to survive while doing so. I think it's easy to give patients and doctors the incorrect idea that scheduling a few rests and getting a shower stool can solve things, when actually what is probably needed are really hard life changes such as drastically reducing work commitments, moving into a smaller, easy care home, or moving back to live wth parents, or even into an assisted living facility, thinking hard about what support is available before deciding about whether to have children ...


    The article gets this crucial thing right though:
     
    Last edited: Sep 26, 2022
    Hutan, Sep 26, 2022
    #30
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  11. shak8

    shak8 Senior Member (Voting Rights)

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    Yes, a dialect thing: in the US, it is "caretakers." Those who take care of someone. We'd have a "custodian" take care of the furnace in a school.
    But there is "custodial care" also, which I'm not sure means what except that it is caretaking.
     
    Last edited: Sep 26, 2022
    shak8, Sep 26, 2022
    #31
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  12. Hutan

    Hutan Moderator Staff Member

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    and then there's caregivers, and caretakers...
     
    Last edited: Sep 26, 2022
    Hutan, Sep 26, 2022
    #32
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  13. shak8

    shak8 Senior Member (Voting Rights)

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    I must have been tripping. You're right it's caregiver. I knew I was 'off' with the caretaker mention.
     
    shak8, Sep 26, 2022
    #33
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  14. ahimsa

    ahimsa Senior Member (Voting Rights)

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    I think caretaker is a more old fashioned word and the language has shifted to caregiver, which I agree is a better word.

    But some people do still use the word caretaker. I just googled and found some recent instances.
     
    ahimsa, Oct 1, 2022
    #34
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  15. Dolphin

    Dolphin Senior Member (Voting Rights)

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    Dolphin, Oct 8, 2022
    #35
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  16. Dolphin

    Dolphin Senior Member (Voting Rights)

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    Dolphin, Oct 8, 2022
    #36
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  17. Dolphin

    Dolphin Senior Member (Voting Rights)

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    Not sure I would use this in my country as child protection issues very rarely arise and it could be putting ideas in people's heads. But perhaps of use to someone:

    ME Association

    The ME Association Clinical & Research Guide 2022: Children & Adolescents - available as a free download

    ME/CFS has been reported in children as young as five, and there appears to be a peak of onset around 13 to 15 years of age. This 6-page chapter has been taken from the 2022 Clinical & Research Guide and we review what is known about ME/CFS in young people and consider the research evidence.

    Download here: https://meassociation.org.uk/a3op
    —
    I’ve set up a thread on this:
    https://www.s4me.info/threads/the-m...search-guide-2022-children-adolescents.30154/
     
    Last edited: Oct 24, 2022
    Dolphin, Oct 24, 2022
    #37
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  18. bobbler

    bobbler Senior Member (Voting Rights)

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    I really like this sort of thing. I think combining this with good descriptions of what PEM is and them maybe moving towards calcs that ID what could be an 'ideal' would be helpful for things like Medical appts, OT needs, disability forms in describing the PEM issue.

    I'm thinking that this particular one, maybe a few other resources if we find them could perhaps do with a thread of their own to work up what could actually be a good protocol for GPs/HCPs etc
     
    bobbler, Oct 25, 2022
    #38
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  19. Dolphin

    Dolphin Senior Member (Voting Rights)

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    Dolphin, Nov 1, 2022
    #39
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  20. Dolphin

    Dolphin Senior Member (Voting Rights)

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    Some more to consider:
    https://meassociation.org.uk/2022/1...ps-in-the-uk-channel-islands-and-isle-of-man/

    Vital information about ME/CFS sent to all GPs in the UK, Channel Islands and Isle of Man!

    What your GPs surgery has received in this mailing
    1. A covering letter from Dr Charles Shepherd (see opposite).
    2. ME Medical magazine: which explains the launch of the DHSC initiatives.
    3. The MEA Summary of the NICE Clinical Guideline on ME/CFS.
    4. The MEA booklet: Diagnosing ME/CFS.
    5. The MEA booklet: ME/CFS & Long Covid: Similarities and Differences.
    6. Information about the CPD training module for healthcare professionals about ME/CFS from StudyPRN.
    7. Information about the CPD training module for healthcare professionals about the NICE Guideline on ME/CFS from MIMS Learning.
     
    Dolphin, Nov 21, 2022
    #40
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