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book:Understanding Severe ME - Essential Guide for Family & Friends

Discussion in 'General ME/CFS News' started by NelliePledge, Aug 2, 2018.

  1. NelliePledge

    NelliePledge Moderator Staff Member

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    Anyone read this book or know anything about the Essex severe ME service which was run by Prof Findley which the author Catherine Saunders got support from and appears to be basing advice on their approach

    Ive been asked to share it on a facebook group it is quite expensive even in kindle so hesitant to highlight it if it is yet another one coming from BPS perspective
     
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  2. Melanie

    Melanie Senior Member (Voting Rights)

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    I checked the UK site and I do not recognize any of the reviewer names. The US site has no reviews.

    Reading the author's statements as being a severe ME patient and "recovery" warrants the caution you are exhibiting. Even if she is a severe patient and has overcome hurdles like Jen Brea has, Jen would never say "recovery" when speaking of herself or any Sever ME patient or any patient of any severity level.

    Wish I could help more.
     
  3. Trish

    Trish Moderator Staff Member

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    I have just bought it on Kindle and skimmed fairly thoroughly through it.

    It starts with a section on the supposed science of ME, with lots of good quotes about it being a serious physical illness. Her attempt to explain the science makes sweeping statements about it all being to do with overactivity of the sympathetic nervous system, being stuck in 'flight or fight' mode, plus some rather vague stuff about mitochondria and genetics based on Myhill's research.

    The author started with mild ME, was sent to an ME clinic psychologist who encouraged her to exercise, resulting in very severe ME for 2 years - bedbound, needing full time care. She then gradually 'recovered' and attributes this to a mix of her own determination, using deep relaxation, nutritional supplements and unspecified alternative therapies, and a good experience as an inpatient at an Essex clinic that no longer exists.

    She uncritically recommends everything from Myhill, to Optimum Health Clinic to unspecified alternative medicine, to NHS ME clinics, listing these at the end without any caveats, despite describing her own disastrous experience.

    She also seems to think that 'recovery' is the normal pattern provided you follow the sort of path she followed, though it's not clear how recovered she is. She uncritically says GET and CBT can be helpful for mild to moderate ME provided you don't push too hard.

    On the positive side, she describes very severe ME well, and the level of care needed, and gives helpful advice for friends, carers, and to supporters of carers.

    The sections on care are entirely based on the assumption that everyone with severe/very severe ME has loving family members who provide very high quality selfless 24 hour care as she was fortunate to have. She makes no mention of the fact that many people are not so fortunate to have that level of loving care.

    The overall impression left is that ME can be a very severe illness for a couple of years, and that if you have the right support, and use the right treatments, you will recover.
     
    Last edited: Aug 2, 2018
  4. NelliePledge

    NelliePledge Moderator Staff Member

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    @Trish thanks so much for doing that - on reading the preview info it didnt give much away in terms of detail - bizarre that despite becoming severe because of exercise she doesnt criticise GET

    that has been very helpful in making my decision :thumbup:

    ETA the email said she is "70% recovered"
     
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  5. Alvin

    Alvin Senior Member (Voting Rights)

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    You can share how incorrect it is and not worth the money based on Trish's summary. Any publicity is not always good publicity and i think its important not just to ignore bad sources but to point out their flaws so others who don't know better don't get sucked in.
     
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  6. Trish

    Trish Moderator Staff Member

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    To be fair she does talk about the importance of pacing carefully, but she uncritically lists loads of NHS clinics including some bad ones, and she suggests that CBT/GET can be OK for less severely affected, even though it made her so much worse. Maybe I misread or mis-remembered that bit. And she recommends the AfME booklet on pacing which, if I remember correctly, suggests increasing activity.
     
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  7. NelliePledge

    NelliePledge Moderator Staff Member

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    this is the first time ive been emailed asking to share info on a book- actually my role in the group is to act as contact point for new members wanting to join. I wouldnt post something on the facebook page about a book unless I personally had found it useful, it would be my personal view. I wouldnt want to post it for info without a commentary or post it with a commentary as that could be perceived as some kind of 'official' group view which doesnt in fact exist.
     
  8. Alvin

    Alvin Senior Member (Voting Rights)

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    i see
     
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  9. NelliePledge

    NelliePledge Moderator Staff Member

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    completely by fluke I was looking for some info for an undiagnosed person living in Norway who has just joined a support group Im involved in
    and came across some information in Norwegian that I google translated as it mentioned Professor Findley in a section about the Lightning Process :wtf::wtf::wtf::wtf:
    on a quick google I found this and apparently at the same time as running this NHS clinic he was doing LP sessions - here he is highlighted on ME agenda debating with Charles Shepherd in 2010 https://meagenda.wordpress.com/category/professor-findley/

    wondering if she mentions LP in the book @Trish
     
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  10. Trish

    Trish Moderator Staff Member

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    I've flicked through again and not found any mention of LP. Here's the gist of what she quotes from Findley in 2006 (he ran the Essex service she attended)
    Prof Findley in 2006 is quoted (I paraphrase) as saying that GET has no place in the treatment of severe ME, but mild to moderate it can help if done as part of a multidisciplinary approach, and talks about gradually moving on to aerobic exercise to overcome deconditioning. Note this was before PACE was published. But he goes on to say CFS is a complex disorder of the nervous system and not a lack of fitness.

    Her bibliography looks like a quick and undiscriminating scan along her bookshelves including random selection of alternative medicine, ME books, healthy eating books, including Perrin technique, Crystal healing, Heal yourself, Alternative cures, and one by Louise Hay who is memorable to me as the author of a dreadful book that basically says if you don't get better it's because you don't want to.

    Her list of NHS clinics includes Crawley's notorious Bath children's clinic Chalder's clinic. No distinction made or warnings given.

    It's a pity she didn't stick to describing her own experience of severe ME and what she and her family learned that is helpful in terms of care and support. Some people may find these sections very helpful. It's when she tries to talk about science, treatment and cures that she comes badly unstuck. And given that's about half the book, I don't think I would recommend it to anyone.
     
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  11. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    Sussex & Kent ME/CFS Society medical advisor
    http://measussex.org.uk/about-us/medical-advisors/
    ( I think you posted this full list elsewhere)

    eta: speaks volumes when you see who the others are.....not to mention good old Colin

    eta 2: have a look at their links!
    BACME, Gupta Program,Lightning Process, bizarrely a link to the CMO guidelines from 2002(?) and a clinic called South Coast fatigue (that I'd not heard of before)
    this is their treatment for the severely affected:
    http://www.southcoastfatigue.co.uk/about.htm
     
    Last edited: Aug 3, 2018
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  12. NelliePledge

    NelliePledge Moderator Staff Member

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    thanks @Sly Saint there was just something at the back of my mind when I saw that name so that must be the bell that was ringing anyway barge pole has been duly deployed ;)
     
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  13. NelliePledge

    NelliePledge Moderator Staff Member

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    thanks @Trish
     
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  14. Leedsandy

    Leedsandy New Member

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    I have read the book, which is clearly intended as an informational for contacts of ME patients rather than one of the many pseudo "how I cured myself of ME books". It even says so the front cover. Many ME patients struggle to explain what is going and as a basic beginners guide on how to spread understanding I think this stands up to scrutiny. As far as I can see the author makes no positive comments on GET or CBT. In my limited knowledge as a carer and patient advocate pacing, which is the basis for recovery, ie repeatable activity from v low baselines is the only way that ME patients can get on top of there symptoms.
     
  15. Mithriel

    Mithriel Senior Member (Voting Rights)

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    Pacing never involved finding a baseline, that came from the clinics. It simply means doing what you feel you can do, listening to your body and stopping as soon as you feel you have too.

    An early piece of advice was to do on a good day 70% of what you can on a bad day and more recently patients have been using heart rate monitors to tell them when to stop and rest.

    Workwell suggests using the first 2 minutes of anaerobic exercise to stop going into the broken aerobic system.

    Most ME patients can't find a consistent base line as what is possible one day is too much for another and pacing never involves increasing activity deliberately. If someone is having a good day and feels they can do a bit more that is fine and often happens naturally.

    Patients also learn to pace by resting before they have to do something strenuous like a doctor's appointment and making sure that they have no commitments for the next few days so they can rest and recover.

    The BPSers have started using pacing as a sort of GET-lite and pretending it is what patients like.
     
  16. wigglethemouse

    wigglethemouse Senior Member (Voting Rights)

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    This is the author on Twitter


    I bought the book but it wasn't useful for me as I'm not in the UK. Mainly a list of UK resources and info for people based in the UK. I no longer have it.

    Exactly. I bought it as I thought it was an autobiography detailing life getting severe ME and then improving. Perhaps that is a future book.
     
    Last edited: Jul 9, 2020
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  17. wigglethemouse

    wigglethemouse Senior Member (Voting Rights)

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    For anyone interested the author has a blog and wrote a 6 part blog of her severe ME story. It details her experience with Dr Findley. It is NOT related to the book of the OP.

    Part 1 : https://understandingsevereme.blogspot.com/2018/01/my-recovery-story-part-1.html
    Part 2 : https://understandingsevereme.blogspot.com/2018/01/my-story-part-2.html
    Part 3 : https://understandingsevereme.blogspot.com/2018/02/my-story-part-3.html
    Part 4 : https://understandingsevereme.blogspot.com/2018/03/my-story-part-4.html
    Part 5 : https://understandingsevereme.blogspot.com/2018/04/i-was-incredibly-lucky-to-be-admitted.html
    Part 6 : https://understandingsevereme.blogspot.com/2018/05/my-story-part-6.html

    The story seems to stop at Part 6 so it is not complete. Maybe that is where the next book comes in........
     
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  18. Leedsandy

    Leedsandy New Member

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    If a patient can't find a baseline doesn't that mean they are setting the bar too high and should cut back further to find what is repeatable daily?
     
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  19. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

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    I used to think so too.

    However, ME is itself a fluctuating illness so a baseline doesn't work. I knew that but it took a long time to get my head around it & I think I wouldn't be so bad today if I'd properly understood this earlier.

    What @Mithriel describes above is much safer, in my opinion. It won't cure but it won't harm.

    Finding and trying to live with a baseline is a bit like constantly picking at a healing wound. You keep reopening it until it becomes an infected mess.

    The idea of a baseline is very appealing because it gives a (false) sense of control & predictability. Not only is ME fluctuating it is easily affected by all sorts of factors beyond a patient's control such as temperature, humidity, comorbidities, noise & light sensitivity, chemical sensitivity, seasonal changes, hormones, acts of DWP, etc.

    Edit - spelling
     
  20. Trish

    Trish Moderator Staff Member

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    If that is feasible given the patient's necessary activities for survival, then I would think it's definitely worth trying quite a drastic cut back for a few weeks to see what happens.
     
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