Pacing booklet

[Bob]

Hi Everyone,

Here's a link to a really well-written, and simple to follow, booklet which tells you everything there is to know about pacing...
It's written by a UK patient organisation, Action for ME.
I've personally found it extremely helpful.

Pacing is the only thing that has ever given me some control over my life, since i became ill, and this booklet is where i learned all about it, so i wanted to share it... It's the only thing that's made a big difference to my illness and moved me towards stability.

http://www.afme.org.uk/res/img/resources/Pacing booklet.pdf

Here's another link to the same booklet which might be a better format for printing it out:
http://www.afme.org.uk/res/img/resources/Pacing booklet 19 March 07.pdf

(They are in PDF format)

Bob
:sofa:

 

[leelaplay]

Hi Bob - thanks for sharing.

A lot of this looks great to me. I am a big fan of pacing and it is one of the most useful tools in my treatment arsenal. It helps me maximize the little energy I have, but in NO way has lead to recovery. Nor have I experienced "natural recovery," nor read of this idea in any accepted research.

My concern is that in a few places this brochure states that "natural recovery" will happen, and that one will be able to increase one's activity gradually, and that "they begin to improve once they accept their illness, understand how it works, and follow a realistic and achievable approach to getting better.

These implications, not based on any research that I know of, and contrary to the research that shows from 0% - 20% recovery rates to about 80% of pre-illness health, are extremely dangerous in my eyes, verging on the psychiatric idea that belief structures will cure a biomedical disease.

I don't know much about Action for ME UK, but I am surprised that they would publish such ideas. To me, it ruins an otherwise useful brochure.

I've only skimmed the brochure, so there be more references of a similar nature, but these are the ones I saw:

'Increasing as able’
As natural recovery occurs and you have found a sustainable baseline, you should
find that you are able to gradually increase your activity pg 16, 25

'A focus on recovery'
Pacing is not a cure for M.E. but by balancing activity and rest in a measured
way you are supporting the body’s natural recovery process, stepping up your
rate of recovery. Many people find that they begin to improve once they
accept their illness, understand how it works, and follow a realistic and
achievable approach to getting better. pg 9

 

[Bob]

Hi islandfinn,
I can see where you are coming from, but the bits that you find unacceptable seem to be a very minor part of the booklet, and I think that you have taken them out of context of the booklet as a whole.
Apart from the words which you have picked out, then it's an otherwise very good, extremely helpful, and practical booklet.
And I don't think that I agree with you that the ideas in this booklet are dangerous... even if the word 'recovery' might be misleading.
It is a carefully written booklet, and to me, it seems to be the opposite of dangerous, but encourages people to listen to their bodies and not to push themselves beyond what they can do safely.
In no way is it a CBT or GET based booklet... quite the opposite.
It just helps people to become more aware of their symptoms, and to work with their illness, rather than fighting against it.
It is the opposite of CBT and GET.
Like I said, I found this booklet invaluable, and I've based all of my symptom self-management on it.

Like you, I haven't experienced an actual 'recovery' either, but my symptoms are certainly more stable, and less severe, and my life a lot better, because of this pacing booklet.

'Increasing as able
As natural recovery occurs and you have found a sustainable baseline, you should find that you are able to gradually increase your activity pg 16, 25

I think if you replace the word 'recovery' with the phrase 'an improvement in symptoms' or 'stability' then maybe you'd have no problem with the booklet? Maybe it's just a badly chosen word?
I would agree with the booklet, that when my symptoms are less severe, then i can safely increase my activity levels.

'A focus on recovery'
Pacing is not a cure for M.E. but by balancing activity and rest in a measured way you are supporting the bodys natural recovery process, stepping up your rate of recovery. Many people find that they begin to improve once they accept their illness, understand how it works, and follow a realistic and achievable approach to getting better. pg 9

Here, I think that they are trying to say that it is better to work with the illness, rather than battling against it. And that when we learn how the illness works, we are more likely to experience a (partial) healing process, or at least an improvement in symptoms. Again, maybe the word 'recovery' is badly chosen, but as far as I can see they don't suggest that you will experience a complete recovery, but it suggests a partial and progressive recovery, or improvement in symptoms. I agree that it is a badly chosen word.

Thanks your feedback,
Bob

 

[Orla]

Hi Bob and Islandfinn.

I also thought this booklet could be useful, especially for an early stages patient, or someone who wanted some tips on pacing. BUT I had a major problem with the use of the word recovery. I don't think it is any accident that they used that word. I saw a talk Pinching (afme's main medical advisor) gave and he really gave the impression that pacing would lead to recovery. He also was a bit patronising I thought and gave the impression that if the patients just did it correctly they would improve.

I think this is a problem politically with how Afme approach their activism. If you think pacing can get someone to recover you can basically lose interest in biomedical treatments, and also one can start to adopt some of the attitude of the psycho-social school. For example it can be seen to be the patients responsibility to recover, and their own fault if they do not (I am simplifying a bit and just giving my general impression). Unfortunately Afme seem to have gone from bad to worse over the last few years, and seem less and less openly criticial, and are often even supportive, of the psycho-social CBT practitioners.

I still think the booklet is useful, but maybe with a bit of a warning not to expect for sure that pacing will lead to full functioing. I wrote out a review of this booklet so I will post some of my thoughts below.


Orla

 

[Orla]

Extracts from booklet review

Positive points about the Booklet: Pacing tips

This booklet has some very good points. These include: encouraging the patient to find their baseline (that level of activity which they can do most days without getting worse the next day); suggesting a few rest periods during the day; encouraging the breaking up of tasks in small chunks so that the person is less likely to overdo it and can recover quicker; suggesting that the person do a bit less than they feel able to do. This is because sometimes things crop up in life and it is good to have a bit of spare energy for this; and if the person wants to increase activity to do so in a very slow and gradual way.

Some weaknesses: Can pacing 'cure' ME?

But there are also some weaknesses in the booklet, and these are quite big ones. It gives the impression that if a person paces themselves properly they will recover. For example the booklet states: "Pacing is about balancing activity and rest to help manage ME and work towards recovery."

For some people if they get good advice very early in the illness and they rest and pace themselves they get better or a lot better. But this only happens for some. Also for people who are not pacing themselves properly if they start pacing they should experience some improvement. But there are limits to how far pacing can bring a person. The booklet does not talk about plateau's, where a person gets stuck at a certain level, sometimes for a very long time.

Flaws in Comments on Pacing, CBT, and GET and their effect on ME?

Another problem I would have is that the booklet states: "In 2002 the Government's Chief Medical Officer published a working group report on CFS/ME that identified pacing as one of three strategies that can be potentially beneficial in modifying the illness, the others being Graded Exercise Therapy (GET) and Cognitive Behavioural Therapy (CBT)."

I don't think there is any evidence to suggest that Pacing, GET or CBT modify the illness. I think this is just speculation. Pacing might help your body get the rest it needs to recover or feel somewhat better. But this is also speculative. This would not so much be altering the illness as giving your body a chance to fight it.

.... Some people have been made very severely worse by GET, ending up in wheelchairs, bedbound etc. I think some of this information should have been included in this part of the booklet. Otherwise a patient, when they find they have reached the limits of the benefits of pacing, might move on to try GET, seeing it just as an optional extra, without realising the risks involved.

Patient referrals to ME/CFS Clinics in the UK

The booklet also states: "Many NHS services for people with M.E./CFS offer a treatment package that draws on the key element of pacing, cognitive behavioural therapy (CBT) and graded exercise therapy (GET). If you are finding it difficult to balance your activity and rest, discuss this with your GP. They may be able to refer you to a structured NHS programme in your area."

I think it is very risky advising people to do this without sounding a note of caution. Some (maybe most) of these services are to be run by people who don't think we are suffering from an organic (physical) illness. It looks like many (most?) of the clinics will be offering little else other than Cognitive Behavioural Therapy and Graded Exercise.

.....Conclusions

Though this booklet has some very useful tips on pacing, and it is worth a read, there are some serious flaws in it. It reads sometimes like parts of it were written by someone who doesn't think we are suffering from an ongoing active disease. A person reading the booklet might think that they can recover through pacing and that the only potential obstacles to recovery are sleep problems, pain or stress (e.g. from comments such as 'If symptoms such as pain, sleep disturbance and low mood or anxiety aren't under control, they can take over and get in the way of recovery'). These can obviously impede improvement, but I think that it is the illness itself is the main barrier to recovery so that even if you manage some symptom control you still have the disease.

 

[Mithriel]

The "pacing" in this booklet is more like the advice that would be given to someone recovering from a serious illness i.e. the illness is gone but the body has to recover from the effects of the illness.

This is totally in line with the clinic message that people with CFS may have had a virus but that is gone and all that is left is a bad attitude - scared to push in case it hurts - and deconditioning.

Pacing in ME is about living within the physical limitations of a disease that is always present and which fluctuates naturally. We have to be sure we are not pushing a damaged system beyond what it is capable of doing in case we cause serious or permanent damage.

If we are in a phase when the burden of disease is lighter we can try to add more activity to keep as much fitness as possible, if we are in a bad phase we should rest as much as we can to give the body a chance.

(This is the advice given to people with rheumatoid arthritis - if the disease is active in a joint rest it, even splint it so it doesn't move, but when the inflammation goes down make sure to mobilise so you can keep as much muscle tone as possible.)

Afme is not on the side of patients, it is paid by government and works for their benefit not ours. Sometimes they talk fine but their actions say otherwise.

Sorry, Bob I don't mean to criticise, but I have seen the result of the kind of thinking behind this leaflet. The situation now is much worse than twenty years ago. It is carefully written so that the underlying agenda is hidden.

Mithriel

 

[Bob]

The "pacing" in this booklet is more like the advice that would be given to someone recovering from a serious illness i.e. the illness is gone but the body has to recover from the effects of the illness.

This is totally in line with the clinic message that people with CFS may have had a virus but that is gone and all that is left is a bad attitude - scared to push in case it hurts - and deconditioning.

Sorry, Bob I don't mean to criticise, but I have seen the result of the kind of thinking behind this leaflet. The situation now is much worse than twenty years ago. It is carefully written so that the underlying agenda is hidden.

Mithriel

Thanks to everyone for your comments on this Pacing booklet...

I have to admit that I read this booklet a couple of years ago,
before I became aware of all of the 'politics' involved in the ME world...
(i.e. before i stopped trusting everything that was said about ME)
so i would probably read it with a more informed and critical eye now...

But when i did read it, I found it totally helpful, and I don't remember it being the way it's been portrayed in this thread...
that's why I challenged islandfinn's comments so strongly...

So, islandfinn, if I was over-critical about your comments, then I apologise to you... I should have been more accepting of your opinion and I should have re-read the booklet before I disagreed with you so strongly. I trust the people on this forum, and you were being helpful and caring, and I kind of dismissed your comments... I should have known better.

I would (and do) trust the people on this forum, over the establishment, any day!

But having said that... at the time when i read the booklet, it made total sense to me, and I didn't find it at all counter-intuitive... it seemed very non-judgemental... it kind of allowed me to give myself space, and not keep pushing myself...
I've used what I learned from the book ever since, and still practise it...
it's made so much difference to my life...
I didn't need to read the book again... i just kept the techniques with me...
so that's why I recommended the booklet without re-reading it...

I accept the criticisms made in this thread, because I respect and trust you all so much, but it was still a life-saver for me at the time, and I've been using the techniques ever since with huge benefit to my life.

Thanks again for all the comments,
Bob

 

[MEKoan]

Thanks Bob, and everyone, for another super interesting conversation!

It's such a shame that there is this faction with an agenda which is not straight forward and honest. If doc.s and others, in the UK especially, were not trained to say one thing while meaning another we would be able to really get the best from pacing which is, as you say, Bob, so really helpful.

I paced my way to a nice long period of 80% remission. During that "remission" I engaged in a whole lot of push and crash, unfortunately, because of a complete lack of understanding on my part, and on the part of any doctor I saw, as to what pacing with this illness actually meant. Now I pace myself to stay stable and it is incredibly helpful.

I think it's really helpful to share these techniques with each other and your experience is probably way more valuable than the pamphlet. I hope you share more of that. I will if you will

 

[Bob]

I've just had another look through this booklet, and I still stand by what I said in my first post, that this booklet has helped me more than anything else.

Some people in this thread have questioned the use of the word 'recovery' in the booklet, and I suggest that it might be helpful to replace the word 'recovery' with 'stability' or 'an improvement in the severity of symptoms'.

I still believe that this booklet could be invaluable for some people, like it was for me.