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New Video Severe and Very Severe ME/CFS

Discussion in 'Resources' started by Adam pwme, Aug 7, 2021.

  1. Adam pwme

    Adam pwme Senior Member (Voting Rights)



    ME/CFS is a serious, long term, and debilitating disease. Patients' energy levels are limited, activities have to be carefully managed to avoid making the condition worse. The hallmark symptom of ME/CFS is that even minimal exertion can cause a flare in symptoms and a reduction in physical capability (a crash) that can last for days, weeks or even months.

    ME/CFS is very unpredictable. The level of disability and symptoms can vary a lot from day to day. People usually need lots of rest before and after an activity and are rarely seen on their bad days. When symptoms are at their worst, often during a crash, people may need extra support (preparing meals, washing, dressing and eating) for days or even weeks at a time.

    Most people with ME/CFS have problems standing or being upright [1]. Many patients report being unable to stand even for a few minutes [2]. The majority of ME/CFS patients experience some type of pain [3] which can be persistent and difficult to control [2].

    Severity ranges from mild to very severe. Around 25% are severely affected, are house- or bed bound and dependant on carers for their every day needs [4]. Very severe patients are in bed all day and dependent on care. They need help with personal hygiene and eating and are very sensitive to light and sound [5]. They are similar to a critically ill patient 24 hours before they die, except they live like that for years and years [6].

    Relapses are common, patients can become significantly more disabled for months or even years; Some never recover. Very severe patients are extremely vulnerable with minimal or no margins. Even small mistakes can lead to prolonged and severe deterioration [7]. Infection is probably the most common cause of relapse. Sensible precautions to prevent infection are advisable [8].

    The majority of severely affected patients are unable to access any services and are not offered homne visits or specialist inpatient care [4]. ME/CFS is not rare. It affects approximately 1 in 250 people [5] and is more common than MS and Parkinson's Disease. Doctors' knowledge on ME/CFS is seriously lacking. Misdiagnosis and inappropriate management are a significant risk for severe patients [4].

    Some of the most severe patients have problems swallowing and tolerating food which is often mistaken for a psychological disorder [9]. Severe ME/CFS is sometimes misdiagnosed as Pervasive Refusal Syndrome, a dramatic withdrawal and refusal to move, talk, eat or drink.

    Parents of children with severe ME/CFS have been accused of falsifying or exaggerating their child's condition. Some have been subject to child protection proceedings and in some cases children have been removed from their parents [10].

    Many severe patients have had such negative experiences that they no longer contact healthcare providers. Help that harms is worse than no help [7].

    [1] https://meassociation.org.uk/about-what-is-mecfs/symptoms-testing-assessment/
    [2] https://www.fda.gov/files/about%20fda/published/The-Voice-of-the-Patient-Report--Chronic-Fatigue-Syndrome-and-Myalgic-Encephalomyelitis.pdf
    [3] https://www.nap.edu/catalog/19012/b...hronic-fatigue-syndrome-redefining-an-illness
    [4] http://researchbriefings.files.parliament.uk/documents/CDP-2019-0014/CDP-2019-0014.pdf
    [5] https://www.nice.org.uk/guidance/gid-ng10091/documents/draft-guideline
    [6] https://www.opendemocracy.net/en/se...26-years-on-why-is-it-still-poorly-understood
    [7] https://www.s4me.info/threads/the-norwegian-me-associations-report-on-severe-me.10140/
    [8] https://meassociation.org.uk/wp-content/uploads/Relapses-exacerbations-etc.pdf
    [9] https://www.mdpi.com/2227-9032/9/4/459/htm
    [10] https://meassociation.org.uk/wp-content/uploads/colby_j.pdf
    Ariel, Forbin, ahimsa and 36 others like this.
  2. mango

    mango Senior Member (Voting Rights)

    :cry::heart: Thank you.

    Great work, well done :hug:
    Wonko, Simbindi, Louie41 and 7 others like this.
  3. Adam pwme

    Adam pwme Senior Member (Voting Rights)

    Thanks Mango
    Louie41, alktipping, Yessica and 4 others like this.
  4. Peter Trewhitt

    Peter Trewhitt Senior Member (Voting Rights)

    An excellent informative video.
    Wonko, Simbindi, Louie41 and 8 others like this.
  5. Adam pwme

    Adam pwme Senior Member (Voting Rights)

    Thanks Peter
  6. alktipping

    alktipping Senior Member (Voting Rights)

    liked and shared the whole series you have made needs a much wider audience. i for one am very grateful for all the work you and your team have put into this .thank you .
    Adam pwme, Simbindi, Trish and 5 others like this.
  7. Suffolkres

    Suffolkres Senior Member (Voting Rights)

    Thanks for this on this important day, Just posted by a friend in Suffolk

    The last 8 years A has suffered severe ME
    Today is severe ME day and I want to pay tribute to my son an amazing person hidden.

    There has been no need for him to suffer stigma but through Ignorance arrogance keeps his illness hidden. Research is there and does have some answers but it has been ignored. Allowing suffering is wrong.
    For anyone who knows me I do not take lightly ignorance or arrogance so I started at the top for change.
    Change is coming

    NICE guidelines are going to be released on the 18th and I am proud of the work I and many more have done. They are a start to the end to the abuse our young people have suffered over decades.

    Special Education Needs are reconsidering ME [​IMG]
    Social care is under Reform
    The Family Courts are under reform and are being made to be more transparent
    Where did I get my inspiration come from A..... Because each day for him is Groundhog Day. Not one day of freedom of just doing what he enjoys wants or what makes him happy. Each and every day he teaches me resilience and hope [​IMG][​IMG] and by fluffy Ducks this will change.

    They will make sure he is treated with the respect he deserves and the research and treatment that will change ground hog day into a life to be lived.
    TiredSam, Amw66, Yessica and 5 others like this.
  8. NelliePledge

    NelliePledge Moderator Staff Member

    UK West Midlands
    Thanks @Adam pwme ive shared this to my Facebook friends and had a couple of responses
    Yessica, Missense, Wonko and 5 others like this.
  9. Adam pwme

    Adam pwme Senior Member (Voting Rights)

    Thanks for sharing Nellie
    NelliePledge, Yessica, Trish and 2 others like this.
  10. Adam pwme

    Adam pwme Senior Member (Voting Rights)

    I only saw this. Thanks much appreciated. It's just me though I wish I had a team
  11. DigitalDrifter

    DigitalDrifter Senior Member (Voting Rights)

    Peter Trewhitt likes this.
  12. Adam pwme

    Adam pwme Senior Member (Voting Rights)


    This MEPedia page says:

    In England and Wales, between 2001 and 2016, 88 death certificates stated that the death was either partly or fully caused by myalgic encephalomyelitis/chronic fatigue syndrome.

    It gets it from the ONS

  13. Amw66

    Amw66 Senior Member (Voting Rights)

    The last line gave identity away- she is a brilliant advocate
    alktipping likes this.

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