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

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

 

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.

 

@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

ETA the email said she is "70% recovered"

 

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.

 

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.

 

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
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

 

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.

 

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

 

thanks @Trish

 

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.