Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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Severe ME Day: MEA website blog

Discussion in 'General ME/CFS Discussion' started by charles shepherd, Aug 8, 2017.

  1. charles shepherd

    charles shepherd Senior Member

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    Severe ME Day: MEA website blog

    Severe ME Day - A time to reflect and to consider what we want to change

    http://www.meassociation.org.uk/201...nsider-what-we-want-to-change-08-august-2017/

    Contents:

    1 Prevalence: How many people might be severely affected by ME?

    2 What can we do together to bring about positive change?

    3 What do we mean by severe and very severe ME?

    4 Resources available from the ME Association

    5 Other resources

    6 Severe ME research in the UK

    7 The NICE Guideline on ME/CFS

    8 Report to the Chief Medical Officer

    Dr Charles Shepherd
    Hon Medical Adviser, MEA


    One omission to the section covering research into severe ME/CFS, which was funded by the MEA Ramsay Research Fund, is the study by Pheby and Saffron into factors that may be involved in the development of severe ME/CFS.

    Full paper available here on the MEA website:

    http://www.meassociation.org.uk/wp-...and-Medicine_Published-paper_vol1_4_50-74.pdf

    CS
     
    Last edited: Aug 8, 2017
  2. taniaaust1

    taniaaust1 Senior Member

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    Sth Australia
    :( Im 70-80% disabled on that chart and its hellish or me right now as currently only getting shopping support services to take me out in my wheelchair and do that (and they arent even helping me with my list so I forget important things). Ive sent myself to jail twice now as I cant take care of myself well at home and being in jail is a better option for me (jail is clean!! my own house gets so bad cause I cant clean it that its twice been declared an occupational health and safety risk for an workers coming to my own home). Sadly I know the UK system is just as bad as the Australian one here

    1/ what needs to be done is to stop protraying ME/CFS as an illness of "tired" people.. articles/media photos should be of the severe group... those in wheelchairs, those on IVs, those with nasal feeding tubes.

    2/ Materials put on on ME/CFS should always include info compatible with the severe group. So often I see ME/CFS info put out that I cant relate to at all... even when its put out by ME/CFS specialists, its like they dont want to have a focus on the severe group.

    3/ "Shared decision making" is no good at all if the ME/CFS person isnt offered suitable options to choose from. Thou im in Australia Im sure what happens here also happens where you are. Im often told by our disability service "we'll we offered **insert whatever it is** to you but you "choose" to not take this up.

    eg I was offered a transport option and that option couldnt take my wheelchair in the car!! (or they offered me a transport service in which picks up several people at once in the same car when I cant be in a car with perfumes etc and my trips out have to be quick or I end up in hospital, I cant be in a car driving place to place picking up others etc) . So this 'shared decision making" which the services where I are are supposed to do, is no good at all to me.


    4/ Its no good just making it so that there are just home visits by ME/CFS specialists only as a ME/CFS person may need also home visits from an ordinary doctor or from others too eg I tore my tendon in my shoulder over a year back now. I still got limited range of arm movement due to this as I cant access from home any physio service. When I need a new prescription or my asthma puffer, I need a normal home visiting dr (instead of having to ring an ambulance and got to hospital just for a prescription as I cant get a dr in to write one).

    5/ ME/CFS people need home visiting social workers, counsellors and they NEED to have an advocate too if they are in the severe group. (I cant advocate well for myself and that is part of my whole issues with everything).

    6/ Dom care people who are supporting someone with ME/CFS NEED some training in this illness. I tend to have to try to teach each new worker I get about ME/CFS and its a nightmare.

    Im in between support agencies right now (left with no homecare) as I had an emotional meltdown over a home support worker person criterizing that I should be doing more when I shouldnt even have been out of bed that day trying to help her. Her comments distress me so much that I had to cancel my home help with her so now my dishes are not getting done, my washing isnt gettting done etc etc. I cant do it and had to stop that worker from coming as I cant handle her picking on me.

    Noone should be working with severe ME/CFS people without training.

    Anyway, Im in Australia but Im sure that what I have written has relevence where you are too
     
    Last edited: Aug 8, 2017
  3. Hutan

    Hutan Senior Member

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    New Zealand
    I'm not sure if we should discuss this paper in this thread. It's good in parts but it has a few problems.

    Here's a concrete example:
    And the statement appears to be correct as the relevant table gives the following percentages:

    (The table heading is slightly confusing - for immunisations the question being answered is 'have you ever been immunised against x?' not 'have you been immunised against x in the last month'. The last month criterion just applies to infections.)

    However, in Page 68 in the discussion
    I think the paper needs another good proofread.

    But I also think it misses some conclusions. @charles shepherd, do you want to set up a new thread for the paper alone?
     
  4. charles shepherd

    charles shepherd Senior Member

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    This study was published in 2009 - so it's probably a bit late for another proof read!

    I will have a look at the points you are making re vaccinations later

    CS
     
  5. Hutan

    Hutan Senior Member

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    New Zealand
  6. Cinders66

    Cinders66 Senior Member

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    1) yes & it's been possible to include pictures etc of the more severe for years the MEA have chosen to use people at a sporting event as their social media pictures which is completely the opposite end of the spectrum.

    2) onwards seem to be about NICE and care
    NICE, by not fully validating the illness in the way the IOM report does, as a serious systemic disease & over promoting CBT etc leaves the severe vulnerable to the medical profession continuing to see this as a "condition" of unknown cause determined by our own behaviour. I didn't actually think their included guidance for the severe was too bad but the gerneral message the medical profession gets about ME is not that IOM message, it's the naf CFS " typified by enduring fatigue" message which pretty much obliterates the existence and reality of the severe forms, deliberately in my view.

    As we want NICE are written I dont think calling for some of it to be better implemented is necessarily helpful

    There isn't an ME specialist with medical training in my area and I don't think many areas, so therefore that issue has to be addressed alongside calling for expert care to be available to the severely ill. Medical training at university level has to include severe ME and ME has to stop being lumped in with less consequential unexplained fatigue and IBS as an MUS.

    I think specialist nurses need to be trained and available for in severe ME management and inpatient places without the pressure to rehabilitate but support for those who want that too should be set up. I don't think Severe ME research is easy without inpatient centres

    Around care the biggest issues for the severe Are failure of Drs/ social services etc to accept the severity, nature, chronicity etc of this form of the illness and constant expectations on people to rehabilitate or improve.

    Yes campaigning is good and the severely affected are in need of campaigning until we feel that the various issues around our recognition, care and research are in place.
     
    Last edited: Aug 8, 2017
    SamanthaJ and Jan like this.
  7. charles shepherd

    charles shepherd Senior Member

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    Re 1: It would be more accurate to say that the MEA uses a variety of pictures on its social media, literature and magazine to illustrate the whole spectrum of severity that this illness causes

    The pic I think you are referring to is of some healthy volunteers wearing MEA t-shirts who are raising money for research

    Re 2: This is the section on severe ME/CFS in the MEA submission to the NICE guideline stakeholder consultation process:

    Around 25% of people with ME/CFS are severely affected – being wheelchair, house, or bed-bound. This group faces a number of serious problems that are not being addressed in the current guideline.

    FIRST is the lack of any meaningful guidance on clinical assessment of people with severe ME/CFS.

    SECOND is the failure to refer to serious neurological symptoms such as diplopia, blackouts, atypical convulsions, loss of speech, and loss of swallowing necessitating nasogastric feeding – all of which are referred to in section 4.2.1.1 of the 2002 Chief Medical Officer's Working Group report on ME/CFS. The only reference to management of severe ME/CFS in the CG53 Quick Reference guidance is on page 17 where it recommends the use of telephone or email based management based on the principles of CBT and GET. This recommendation has not been welcomed or used by people with severe ME/CFS.

    THIRD is the almost complete lack of any form of domiciliary care or assessment being provided by hospital-based referral services for people with severe ME/CFS. When added to the fact that it has become increasingly difficult for people with severe ME/CFS to obtain a home visit from a GP, many are left with no form of on-going medical care at all.

    McDermott et al surveyed all of the 49 English NHS specialist CFS/ME adult services in England, in 2013. This involved a cross-sectional survey conducted by email questionnaire

    All 49 services replied (100%). 33% (16/49) of specialist CFS/ME services provided no service for housebound patients. 55% (27/49) services did treat patients with severe CFS/ME and their interventions followed the NICE guidelines. The remaining services (12%, 6/49) offered occasional or minimal support where funding allowed. There was only one NHS unit providing specialist inpatient CFS/ME provision in England.

    Reference:

    McDermott C, Al Haddabi A, Akagi H, et al (2014) What is the current NHS service provision for patients severely affected by chronic fatigue syndrome/myalgic encephalomyelitis? A national scoping exercise BMJ Open 2014;4:e005083. doi: 10.1136/bmjopen-2014-005083

    FOURTH is the way in which lack of proper medical care results in people with severe ME/CFS having great difficulty in accessing social care. This situation resulted in an Inquiry by the All Party Parliamentary Group on ME.

    Reference:

    Social care and ME/CFS – interim report prepared for the APPG on ME:

    https://www.actionforme.org.uk/.../close-to-collapse...

    I have also had a letter today from Dame Sally Davies, the Chief Medical Officer for England, regarding our submission to the stakeholder consultation process

    It looks as though we are not going to get a firm decision from NICE on updating the ME/CFS guideline before October

    CS
     

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