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

[Baboushka]

Hi, I’m a new member of this group (will introduce myself very soon!) but I have a burning question and I wonder if others on here can help me. I've got my assessment next week at the local cfs/pain management clinic. They’ve advised me to read the book “Overcoming chronic fatigue” by Mary Burgess and Trudie Chalder before then. Basically, it’s about using CBT techniques and graded exercise. I'm posting this to sound people out before I go – has anyone read this and if so, can I have your views please? Can people also give their views on CBT and graded exercise – I’m just trying to get my head round stuff before I go. My first impression of this book is there are no references in it – it says there is evidence of trials but the evidence isn't shown, neither are the numbers used in the sample groups. It’s not sitting well with me currently, some of the statements are very woolly and they don’t say what their comments are based on – I’ve only read a few chapters but I can’t say I’m impressed. Having said that, I can see what they’re saying about deconditioning and having structure, however, living with ME and managing it isn’t as simple as they make out (in my opinion). This is my third bout of ME, last time I was ill for six years, this time round I’ve been unwell for over 2 years. Some days I can barely walk – I’m struggling to see how this therapy is going to help me at all. Thanks.

 

[Esther12]

Trudie Chalder cannot be trusted.

She has been involved in a lot of the spin around the recent PACE trial. I started this thread about some easier to understand spin of hers: http://forums.phoenixrising.me/inde...o-educational-intervention-to-aid-reco.13326/

I've not read that book, but have heard some really negative stuff from people I respect. Personally, I would not trust anyone who recommended the book either.

Sorry to hear about your health troubles, and to not be able to tell you what a great plan for recovery Chalder has! If you improved a couple of times before, could you try doing similar things that helped last time? It seems that some people do end up with symptoms that come and go and no-one really knows why. Best of luck with everything.

 

[peggy-sue]

When you were well, did you ever do a bit more exercise than you are used to, and ended up a little bit sore?

That's what Trudy Chalder believes is wrong with you.

You have "rested too much" and become unfit and now you're frightened of the tiny bit of discomfort that happens when you try to get fit again.

I'm sure you know that is not the case, you've lived with this for too long to believe that.
You know your own body, to have coped this long with it, you have had to learn to listen to your body and go with what you feel you can or can't do.
You know far more about your illness than they do.
Don't let them brow-beat you - or do anything you are not completely happy with. Do NOT push beyond your limits.
You know it will only make you worse. You are right.

They can tell you till they're blue in the face that it will do you good. They are lying.

 

[Min]

http://www.gracecharityforme.org/documents.asp
Saying No Can Be Positive” empowers sufferers who wish to refuse psychological therapies.


Graded exercise, whatever they choose to call it at the moment , adaptive pacing, graded activity, has made many of us permanently relapse. Advice to exercise killed ME suffer MP Brynmor Johns, who died of a heart attack leaving the House of Commons gym.

CBT is designed to help us overcome our false illness beliefs. As such it is highly offensive, as we have a real neurological illness.

Please use your common sense and do not be coerced into anything you know will make you worse. There is no scientific evidence that deconditioning is the cause of our illness, or that it perpetuates it. These daft treatments and theories have been developed by psychiatrists working for heakth insurance companies that do not want tp pay out to myalgic encephalomyelitis sufferers.

 

[Baboushka]

Thanks ever so much - your comments are all really useful. I thought I'd show willing by getting the book but it is so "thin" and woolly - it really set my alarm bells ringing. I pace myself well, I have days when I know I can't get out of bed. I know there's no way on those days I could walk even 20 metres - it's impossible. I'll introduce myself very soon in the members intro page. Thanks again

Min, I didn't know that the CEO of action for ME earns £75 k or that they're involved in the PACE trial. Streuth.

 

[SilverbladeTE]

Heyas!
And welcome to the Legion of the Damned!



LOL, ah good old CBT and exercise, it's like telling a one legged man he can grow another leg by entering an ass kicking contest

welcome to an insane world, where the mentally deviant tell the physically sick that it's all in their head and exercise will cure them!
Seriously, did I accidently stumble into the TARDIS one damp and drunken night, and emerged into this FUABRed universe?
Are Chalder, White, Sharpe and Wessely really brain sucking mind flayers schlurping up the dwindling IQ pool in Westminster and Congress?

We maybe in Life's gutter, or rather, alley way no one wants to go into, but it's warm and cosy and the folks nice, and not backstabbing butt schlurpers

 

[Sparrow]

I would run as fast as I could away from any clinic pushing that book at you. ...Which may not be particularly fast, admittedly, but is probably a much better use of your energy than trying strict graded exercise or CBT that is based around overcoming a fear of activity.

I pushed to exercise. I became bed ridden for over three years as a result. I did not begin to truly heal until I learned to avoid crashing at all costs, and to do far LESS than I was trying to do, not more. (...and Equilibrant was helpful for me, but that's sort of a separate topic).

The pieces of the psych theory just simply don't fit. Are you scared of moving because it's scary, or logically aware of how much you can or can't move based on consistent past results and worsening of your condition? I would not go to this clinic unless you have no choice. They may mean well, but they cannot help you if they're making completely false assumptions about the nature of your illness.

 

[alex3619]

I recommend starting here: http://evaluatingpace.phoenixrising.me/

CBT and GET have no objective evidence, I say again NO objective evidence, that they work for strictly defined CFS and ME. The evidence is also very poor that they work for idiopathic chronic fatigue. Many people with idiopathic chronic fatigue improve over time, and I think they count those as successes. The evidence they accumulate is subjective.

Every study that has used objective measures either shows no benefit, or worsened patient health.

Every patient survey for about a decade shows these treatments are more likely to harm than help.

Its so bad that I think if we can collate the evidence properly, then I think we need to make a formal request to have the PACE studies, the main support for CBT and GET, retracted from publication.

 

[MeSci]

Welcome, @Baboushka. (I am getting the urge to sing/ruin the Kate Bush song of the same name.)

Some excellent advice given already.

If you do want to read a book, a MUCH better one is available via this page.

It's "Chronic Fatigue Syndrome: A Treatment Guide, 2nd Edition" and it's an e-book. You can get the 1st edition in paper form.

Good luck on your journey. Pace, rest and find out what diet suits you best. There's a lot of stuff about diet in the leaky gut section and elsewhere on Phoenix Rising.

 

[Baboushka]

oh thanks folks - I feel I am in good company here

Sing away MeSci - we can all join in (when energy permits) x

I agree with what you've all said above. I'm not depressed (I'm rather happy really as I've accepted my limitations - I get frustrated frequently though as there are soooo many things I would like to do but physically can't). I know when I need rest up, so when I feel like I have no bones in my body and that all encompassing fatigue washes over me, then I rest. I would love to exercise but currently there's not a cat in hells chance. I just needed to hear other peoples views - thanks all

 

[A.B.]

I recommend to not waste any time on this clinic, unless you think that you are thinking yourself ill, which is what these people are specialized in treating.

The only "psychological" intervention that has helped me was to stop listening to psychobabble. Psychobabble practitioners are great at making me feel incapable of solving my own problems, great at making me feel depressed and incapable of doing the right things, and generally just being worthless.

 

[Sparrow]

I agree with what you've all said above. I'm not depressed (I'm rather happy really as I've accepted my limitations - I get frustrated frequently though as there are soooo many things I would like to do but physically can't). I know when I need rest up, so when I feel like I have no bones in my body and that all encompassing fatigue washes over me, then I rest.

Having lots of things you'd love to do if you were able is the distinction between ME and depression. That alone tells me you're probably not depressed.

In case it helps at all, you mentioned that you rest when you feel like you have no bones in your body and that all encompassing fatigue washes over you... If there is one single thing I have learned that has made the most impact on my recovery, it was learning to rest LONG before that point. Once I get to that point, I have already gone far enough to hamper my progress. Took me forever to figure that out and realize that many of the symptoms I thought were just a constant part of the illness were actually low-grade Post-Exertional Malaise. I thought it was only the huge crashes that fit into that category. Turns out I was slowing down my recovery for a really long time. The pace picked up rapidly once I stopped letting it get to that stage.

I don't know if that will be helpful to you or not, but I wanted to say it just in case it makes a difference. Nobody should have to live with this illness for a day longer than they have to.

 

[Allyson]

I recommend to not waste any time on this clinic, unless you think that you are thinking yourself ill, which is what these people are specialized in treating.

The only "psychological" intervention that has helped me was to stop listening to psychobabble. Psychobabble practitioners are great at making me feel incapable of solving my own problems, great at making me feel depressed and incapable of doing the right things, and generally just being worthless.

agreed - I find treating POTS was the most helpful thing I did

and totally disagree with the "deconditioning " theory - if that was the case top athletes would never fall ill with it...and many of us were very athletic when we got ill

If you get a TTT - tilt table test for POTS done you have some positive medical evidence that rules out the psychobablists too

ALly

 

[Sparrow]

and totally disagree with the "deconditioning " theory - if that was the case top athletes would never fall ill with it...and may of us were very athletic when we got ill

And it just can't account for the realities of the illness. I became super ill really suddenly, and so bad that I couldn't crawl, couldn't lift my head, couldn't roll myself over, etc. for a while. Deconditioning just can't explain things getting that severe that quickly. And when I started resting much more, I started recovering much faster. That makes no sense from a deconditioning standpoint. And I can go from being able to walk normally one day to barely able to shuffle the very next day. That makes no sense at all. Did I suddenly become deconditioned, then recover completely, then get suddenly deconditioned again? And it can't explain many of our other symptoms. And it can't explain mental exertion causing PEM. And it can't explain the results of 2-day exercise testing that show us to be distinctly unlike people who are just deconditioned. ...Really it's kind of amazing that people are still throwing this theory around.

 

[Baboushka]

I'd never looked at it that way before Sparrow, going from being able to walk normally one day then barely shuffling about. Your comments are useful about resting long before getting to the point of feeling like Ive got no bones in my body. It's the brain fog and forgetfulness which I find really frustrating. As for depression, I have my down days like most people but in the main I'm a very positive upbeat happy person - just wish I could do all the things I could previously. There again, don't we all... What's PEM?

 

[Allyson]

I'd never looked at it that way before Sparrow, going from being able to walk normally one day then barely shuffling about. Your comments are useful about resting long before getting to the point of feeling like Ive got no bones in my body. It's the brain fog and forgetfulness which I find really frustrating. As for depression, I have my down days like most people but in the main I'm a very positive upbeat happy person - just wish I could do all the things I could previously. There again, don't we all... What's PEM?

post exertional malaise

 

[Allyson]

And it just can't account for the realities of the illness. I became super ill really suddenly, and so bad that I couldn't crawl, couldn't lift my head, couldn't roll myself over, etc. for a while. Deconditioning just can't explain things getting that severe that quickly. And when I started resting much more, I started recovering much faster. That makes no sense from a deconditioning standpoint. And I can go from being able to walk normally one day to barely able to shuffle the very next day. That makes no sense at all. Did I suddenly become deconditioned, then recover completely, then get suddenly deconditioned again? And it can't explain many of our other symptoms. And it can't explain mental exertion causing PEM. And it can't explain the results of 2-day exercise testing that show us to be distinctly unlike people who are just deconditioned. ...Really it's kind of amazing that people are still throwing this theory around.

so true Sparrow

and I find GENTLE massage or a reclining massage chair SO much more helpful than exercise - and I love exercise

aLLY

 

[SOC]

In case it helps at all, you mentioned that you rest when you feel like you have no bones in your body and that all encompassing fatigue washes over you... If there is one single thing I have learned that has made the most impact on my recovery, it was learning to rest LONG before that point. Once I get to that point, I have already gone far enough to hamper my progress. Took me forever to figure that out and realize that many of the symptoms I thought were just a constant part of the illness were actually low-grade Post-Exertional Malaise. I thought it was only the huge crashes that fit into that category. Turns out I was slowing down my recovery for a really long time. The pace picked up rapidly once I stopped letting it get to that stage.

I couldn't agree more.

 

[Allyson]

I couldn't agree more.

I will go further and say it is being horizontal ( and with legs elevvated, not hanging down) that helps rather than just resting

for me that is due to POTS !...which is due to EDS

no question about it

Ally

 

[Valentijn]

What's PEM?

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.

There have been multiple studies documenting abnormal immune responses in ME patients after exertion, when compared to sedentary controls, which may help in explaining PEM in addition to being objective documentation of biological abnormalities. 2 day CPET (cardio-pulmonary exercise test) also shows unequivocally that ME/CFS patients have a reaction which is completely different from sedentary (deconditioned) controls: the controls will perform a bit better on the 2nd day, whereas ME/CFS patients will perform much worse, even when objective measurements show that they are exerting maximal effort (not holding back).

Some top notch researchers and clinicians advocate keeping your heart rate under a certain level to avoid triggering PEM. Testing can determine that limit, though there's also a more approximate formula: (220 - age) x 0.6 . That gives me a limit of about 110, so I know to avoid activities pushing me above that, and to take a rest if an essential activity is taking me over that. I use a finger pulse oximeter (20-30 euros) to keep an eye on my heart rate. Some days my heart rate gets that high just from standing up, or even from sitting up too long, and those are days when I need to be especially careful and lay down a lot.