Views on "Overcoming chronic fatigue" by Mary Burgess/Trudie Chalder

[Snow Leopard]

The CBT/GET approach that is popular in the UK is often more trouble than it is worth.

My view is that CBT can be helpful in a minority of patients who struggle with behavioural or cognitive issues, modest exercise can be helpful so long as you don't over do it (or neglect your normal day to day activities to do it), though I don't like the GET approach to this.

 

[taniaaust1]

I'd be running as fast as you can from that clinic and go find yourself a proper decent specialist who understands ME (rather then only having an understanding of "chronic fatigue" such as Trudie Chandler which isnt ME/CFS).

People at this website can tell you decent specialists if you ask ones from where you are. Too many of us have been made worst by bad doctors or by given the wrong advice eg GET/CBT. I myself did too much early illness as no doctor gave me good advice to rest and not push myself.. so then ended up completely bedbound with this illness with my own 9-10year old at the time having to become my carer.

I guess they must be getting desperate if they are attempting to brainwash people into thinking its their fault and thinking by getting them to read this book before they even attend the appointment. Im curious, was the book loaned to you or did they also get you to buy it?
..........

The best thing you could probably read to educate yourself better before your appointment is to check out the Canadian consensus ME/CFS document for medical practioners (but its simple enough for even us to understand and has a chart which shows how how different our bodies react physiologically wise to exercise references included) http://sacfs.asn.au/download/consensus_overview_me_cfs.pdf (and also the newish International ME one when you have timehttp://sacfs.asn.au/download/me_international_consensus_primer_for_medical_practitioners.pdf) .. these were done by doctors/specialists which are experts in ME/CFS and not the ones we call psychobabblers like trudie chandler. Please at least check out the Canadian Consensus one as it will teach you so much about this illness... and does have references you seek!! I think its the best starting point for someone new to ME/CFS.

Take care.. bad doctors can cause a lot of damage both to your mental health and to your physical health. People have become suicidal after doctors have implied they need to try harder or lazy and have not listened to how sick they are.
............

edit what I screw up.. I wrote psychologically instead of physiologically. Glad I saw that error

 

[Baboushka]

Thanks everyone, your comments are all very helpful and definitely food for thought. I'll certainly check out the Canadian document you mention taniaaust1. When I last saw my gp (months ago) and asked him his thoughts on Me/cfs, he said the way to get better was cbt/get (I needed to confirm where he stood on this). He acknowledges I have this condition - we had quite a debate about it and his view is that information is valid if it is published in the BMJ - it appears that cbt/get are the therapies recommended by NICE and the BMJ

 

[peggy-sue]

Your gp is misguided.

 

[MeSci]

PEM is Post-Exertional Malaise (sometimes called Post-Exertional Neuroimmune Exhaustion). Basically it describes our particular sort of exercise intolerance - that we can have a relatively long delay (24 hours or more) between the exertion and the extreme dysfunction which that exertion triggers. People like Chalder incorrectly believe that PEM is the same as normal/healthy muscle soreness the day after exercising muscles more than usual. A big difference is that normal muscle soreness will be confined to the muscles which were used and feel relatively good, whereas PEM tends to result in full body pain, extreme exhaustion, and cognitive difficulties, in addition to often lasting a lot longer than muscle soreness would.

I also sometimes get, or got, nausea, loose bowels, insomnia, polyuria, mineral deficiency (especially sodium), dizziness, blurred vision, cramp, numbness, tachycardia...not much pain though (apparently I am lucky in this). Fatigue is nowhere near my worst PEM symptom.

 

[peggy-sue]

Here is a simple article which explains how your gp is misguided. A nice critique of PACE. from the Chairman of the MEAssociation.
http://www.meassociation.org.uk/201...al-thread-in-the-pace-trial-16-february-2014/

 

[SOC]

I also sometimes get, or got, nausea, loose bowels, insomnia, polyuria, mineral deficiency (especially sodium), dizziness, blurred vision, cramp, numbness, tachycardia...not much pain though (apparently I am lucky in this). Fatigue is nowhere near my worst PEM symptom.

Yes, an important point that most people miss but is made clear in the ICC is that PEM (or Post-exertional Neuroimmune Exhaustion as it's called in the ICC) means an exacerbation of many symptoms not just fatigue and muscle aches.

Flu-like symptoms are common as are GI and endocrine problems MeSci mentioned. The phraseology the ICC uses is "prominent symptoms in the neuroimmune regions". That's not just next day tiredness and muscle aches.

 

[peggy-sue]

I have tracked down (from the lovely Dolphin's signature) a link to some videos nurse Chalder has done, to teach gps how to flannel you. You might find them interesting.
Forewarned is forearmed.

http://forums.phoenixrising.me/inde...sh-gps-on-how-to-deal-with-cfs-patients.3079/

I don't ever refer to Chalder as being a "professor". She is a nurse, that is all she is qualified in. Her promotions up the ranks of "academia" have all been personally engineered by her bosses, because her face fitted. She has not actually done the work required to merit the titles she has.

 

[peggy-sue]

And another important link to a thread, also "tracked down" via Dolphin's signature.
Isn't it kind of her to have these important things so easy to find!

http://forums.phoenixrising.me/inde...liverpool-cf-cfs-clinic-patient-handout.3066/