Psychiatric Theory in practice: Liverpool CF/CFS Clinic Patient handout

[Gerwyn]

Orla I areadont know about this but is it possible to find out if these patients are diagnosed according to nice guidlines if not why not

Just as a point the Nice guidelines referr to CFS also known as ME

Perhaps it may be worth using the terminology ME also known as CSF because doctors will assume the difference in our favour.most of my docs think the two are seperate anyway.We can play the same game as the psychos

ME the neurological disorder also labelled by psychos as cfs .The press think they are different as well

 

[jace]

Absolutely. Gerwyn is spot on. Always refer to having ME with a /CFS if necessary.

Thank you, Orla, for the heads up. I am being referred to the Sussex CFS clinic - in about three months - and if this is the songsheet they are using (same as Tracy Chalder in the GP training video mentioned above) (link) then it is better to be forewarned.

What do they mean, ME aka CFS patients muscle recovery is the same, and takes the same time, as well people. We all know this is untrue, and this pretty picture

illustrates it nicely.

I find I am getting more respect for my knowledge of my illness at doctor's appointments these days - is the worm turning??

I think it is our main task to educate those people we come in contact with on a daily basis.

 

[Orla]

Hi all, thanks. It has been a lot of work writing stuff out but I think it could be useful in he long-run.

Elliot, thanks for your post, and for "coming out" so to speak about your experience. East midlands That deserves a thread of its own. If I get the energy I might start that in a few weeks.

<At first it looks credible in how it's explained, muscle deterioration..but then after a while it sinks in that the whole thing seems to contradict so many biological studies. I personally have tried get/cbt, mainly due to desperation! But after quite a while of doing it I've not found it helpful atall. Reading up on all of the controversies surrounding it has made me slightly aghast also. Great posts by the way Orla, liking the dissection of each bit; makes the read far more palitable >

The booklet makes the information sound scientific and based on research and good clinical observation and practice. This is one of the things that makes it so dangerous. They are also telling patients that they can cure themselves, which of course is a very attractive idea.

It would be easy to be at least temporarily convinced by the information, and to try GET etc. and it could be too late before someone realised that it was harming and not helping them. And they keep hammering home how safe exercise is (I will be posting on the exercise section of the booklet soon - I am sure you will all be delighted to hear more about that particular "cure" ).

Orla

 

[Orla]

Jace, Sussex, I am afraid is into the psycho-social view of ME/CFS. I think they are linked in with the Barts CFS clinic (in London) in some way. If you want to see what Barts is like click on this link http://forums.aboutmecfs.org/showthread.php?t=1757

You could still keep the appointment and report back?? Though it could be risky if some crap ends up on your medical notes. On the other hand it could be difficult to wriggle out of the appointment now without looking uncooperative.

Because some people were unhappy with the patient group in Sussex, which supports the psychiatrists, they set up an alternative patient group. I will dig out the details for you. They might be able to give you more info.

About this:

<lot of people will get better this way because the oxford criterea are anti positivistic in nature so the patients in question are those that the Dr subjectively assess as having chronic fatigue syndrome.The oxford guielines are wholly subjective in nature and hence not scientific in any way >

Yes, Oxford is ridiculous. But another thing for people to remember is that we cannot take anything the psyche lobby claims as a success (either from the studies or clinics) as a claim based on actual facts, unless there is objective evidence. Often the reality is totally different from the spin they put on it.

This is interesting re someone who was a partient participant on the FINE trial:

Data they collected about me was misleading. Only questionnaires were used in the 2 sessions I had with the researchers and the questions were leading and did not reflect my true feelings. Also the researchers spent 2-3 hours with me each time which was so exhausting that I think I didn't really know what my replies were. http://www.investinme.org/Article-015A FINE Trials-Alice.htm

The interesting thing about this clinic in Liverpool is that they don't listen to patients, or change their ideas based on patient experience. Even when people attending the clinic challenged some of the ideas they were given, they were dismissed as being negative and so on (this is what I have heard).

Another interesting thing I have heard about the UK clinics in general is that they have high dropout rates, and often the people who finish the courses are the ones who don't have ME/CFS in the first place. If a proper audit was done this would be picked up. Of course the psycho-social people have the whole thing stitched up, so I am not sure this will ever happen, and of course they would probably turn their own failure on the patients, saying they weren't motivated etc, as an excuse for their own uselessness.


Gerwyn, about their criteria etc. On page 3 of the handout they have

What is Chronic Fatigue Syndrome?
Chronic Fatigue Syndrome can be shortened to CFS.

it is sometimes called: - Post-Viral Fatigue Syndrome

- M.E. or Myalgic Encephalomyelitis

So they think they are the same.

I understand te argument about de-linkng ME and CFS but I think it could be a dangerous one at this time. These people think ME=Fatigue CFS=Fatigue so ME=CFS=Fatigue. They claim to be talking about all of us, no matter what we think. And they are the ones that have the clout and the ear of the government.

And CFS was the name for the ME epidemics in US, so historicaly they should be the same thing (of course the definitions were a bit different, and then the politics screwed it up etc). Most of the research is conducted on "CFS", so that is another problem. And most patients will now be diagnosed with CFS rather than ME, so I would be worried about patients getting shafted if they ended up in the CFS bracket, if the 2 terms were de-linked.

On the other hand, I do think a clear distiction needs to be made between Chronic Fatigue and ME/CFS. But no point in talking to the psychologisers, as they know all the arguments already and don't care. It is other people that this point needs to be put to, though I am not sure most of them will really get it until we have tests to prove we are sick. Of course they won't run tests for fear of encouraging our beliefs that we have an illness. So catch 22 there.

Orla

 

[Orla]

End of Chpt. 7 Summary of Alterntive Thoughts

Summary of Alternative thoughts

1. Everyone has unhelpful thoughts
2. They are not always based on accurate facts and can be misleading (p48)

[Orla Yes Pauline (Powell) you need to say that to yourself while standing in front of a mirror]

6.Based on your knowledge, from all the facts, you can ask yourself whether those thoughts [were] helpful or harmful to your recovery? (p48)

[Orla they can get patients in a bind with this. Since if they are not recovering it can be said that it could be partly due to unhelpful thoughts. So there is likely to be an assumption No recovery = unhelpful thoughts]

Thanks Maarten. It is nauseating stuff allright. Wait till you see the exercise programme. That's coming next.

Orla

 

[jace]

Orla, I will attend (if I'm not too sick to get there) and I will report back. I am in touch with the alternative patient group, so no need to dig out the info. Thanks for your work again.

Jane x

 

[Gerwyn]

Jace, Sussex, I am afraid is into the psycho-social view of ME/CFS. I think they are linked in with the Barts CFS clinic (in London) in some way. If you want to see what Barts is like click on this link http://forums.aboutmecfs.org/showthread.php?t=1757

You could still keep the appointment and report back?? Though it could be risky if some crap ends up on your medical notes. On the other hand it could be difficult to wriggle out of the appointment now without looking uncooperative.

Because some people were unhappy with the patient group in Sussex, which supports the psychiatrists, they set up an alternative patient group. I will dig out the details for you. They might be able to give you more info.

About this:



Yes, Oxford is ridiculous. But another thing for people to remember is that we cannot take anything the psyche lobby claims as a success (either from the studies or clinics) as a claim based on actual facts, unless there is objective evidence. Often the reality is totally different from the spin they put on it.

This is interesting re someone who was a partient participant on the FINE trial:




The interesting thing about this clinic in Liverpool is that they don't listen to patients, or change their ideas based on patient experience. Even when people attending the clinic challenged some of the ideas they were given, they were dismissed as being negative and so on (this is what I have heard).

Another interesting thing I have heard about the UK clinics in general is that they have high dropout rates, and often the people who finish the courses are the ones who don't have ME/CFS in the first place. If a proper audit was done this would be picked up. Of course the psycho-social people have the whole thing stitched up, so I am not sure this will ever happen, and of course they would probably turn their own failure on the patients, saying they weren't motivated etc, as an excuse for their own uselessness.


Gerwyn, about their criteria etc. On page 3 of the handout they have



So they think they are the same.

I understand te argument about de-linkng ME and CFS but I think it could be a dangerous one at this time. These people think ME=Fatigue CFS=Fatigue so ME=CFS=Fatigue. They claim to be talking about all of us, no matter what we think. And they are the ones that have the clout and the ear of the government.

And CFS was the name for the ME epidemics in US, so historicaly they should be the same thing (of course the definitions were a bit different, and then the politics screwed it up etc). Most of the research is conducted on "CFS", so that is another problem. And most patients will now be diagnosed with CFS rather than ME, so I would be worried about patients getting shafted if they ended up in the CFS bracket, if the 2 terms were de-linked.

On the other hand, I do think a clear distiction needs to be made between Chronic Fatigue and ME/CFS. But no point in talking to the psychologisers, as they know all the arguments already and don't care. It is other people that this point needs to be put to, though I am not sure most of them will really get it until we have tests to prove we are sick. Of course they won't run tests for fear of encouraging our beliefs that we have an illness. So catch 22 there.

Orla

my argument is not really about delinking but a change of emphasis M.E (relabelled by some psychiatists as cfs) ME is classified by the WHO as a neurolgical disorder

Use whatever weapons we have.Just a suggestion but the power of the label is huge

 

[Orla]

Hi Gerwyn, CFS is also classified as neurological by the WHO. It is index linked to ME, so has same number (note different classification of Fatigue Syndrome and Chronic Fatigue syndrome in second link)

ICD 10

http://www.meactionuk.org.uk/G93-3-ICD-10-compilation.jpg

http://www.meactionuk.org.uk/G93-3-ICD-10-index-closeup.jpg

If XMRV pans out, even for some, it might move things along in a non-psychiatric direction for everyone, though I would still be worried about some being left behind.

Orla

 

[Orla]

Abnormal reactions to exercise in ME/CFS

Before I posted some of the comments in the handout about their exercise programme recommendations, I thought I should post some quotes regarding exercise and ME/CFS from elsewhere, as this will put the (hideous) Liverpool comments in context. I will go on to post comments regarding the suggestions for exercise from the Liverpool literature.

I got these quotes below (or most of them anyway) from http://www.meactionuk.org.uk/Organic_evidence_for_Gibson_Large_Print.html I have put some sentences in bold.

"Relapses are precipitated by undue physical or mental stress" The postviral syndrome: a review. MI Archer JRCGP 1987:37:212-216.

In more acutely affected individuals the advice to exercise back to fitness is a recipe for disaster. The postviral fatigue syndrome WRC Weir Current Medical Literature (Royal Society of Medicine) 1992:6:1

Any kind of muscle exercise can cause the patient to be almost incapacitated for some days afterward. In severe cases, the patient is usually confined to bed. What is certain is that when one reviews (the) clincal features and laboratory results, it becomes plain that this is an organic illness in which muscle metabolism is severely affected. Postviral fatigue syndrome PO Behan WMH Behan, Crit Rev Neurobiol 1988:4:2:157-178

"The abnormalities we found provide clear evidence for central nervous system and neuromuscular involvement". Carolyn L Warner: Neurology, March 1989:39:3: Suppl 1:420; Presentation at the American Acadamy of Neurology Conference, Chicago, April 1989.

The purpose of this study was to determine if patients with CFS have less vagal power during walking and during rest periods following walking...Patients had significantly less vagal power than the control subjects, despite there being no significant group-wise differences in mean heart rate, tidal volume, minute volume, respiratory rate, oxygen consumption or total spectrum power. Notably, patients with CFS had a significant decline in resting vagal power after periods of walking. These results suggest a subtle abnormality in vagal activity to the heart in patients with CFS. Decreased vagal power during treadmill walking in patients with chronic fatigue syndrome Cordero DL Natelson BH et al. Clin Auton Res: 1996:66):329-333

"Complaints of muscle weakness and pain are common, and abnormal muscle metabolism has been reported to occur in CFS. CFS patients had recovery for rates for oxygen saturation that were 60% lower than those for recovery of oxygen saturation of normal subjects. The present study has demonstrated direct impairments in oxygen delivery in CFS patients compared with normal controls. These impairments were more clearly seen after exercise. The impaired oxygen delivery seen in the CFS subjects in the present study could result in reduced exercise capacity" Impaired oxygen delivery to muscle in chronic fatigue syndrome. Kevin K McCully Benjamin H Natelson Clinical Science 1999:97:603-608.

The standard for measuring exercise capacity has always been the maximal oxygen uptake (VO2 max) during high intensity whole body exercise..Our patients with CFS had an average VO2 max just below 20 mL/kg per minute, representing significant impairment relative to the controls...Comparing the exercise capacity in our patients with data from other studies shows a functionality similar to that of individuals with chronic heart failure, patients with chronic obstructive pulmonary disease, and those with skeletal muscle disorder Exercise Capacity in Chronic Fatigue Syndrome, Pascale de Becker Neil McGregor Kenny De Meirleir et al Arch Intern Med 2000:160:3270-3277

"Wessely et al (JRCGP 1989:39:26-29) hypothesized that physical deconditioning might play an important role in CFS..In the present study, CFS patients did not have a worse physical fitness compared with controls...physical deconditioning does not seem a perpetuating factor in CFS. Is physical deconditioning a perpetuating factor in chronic fatigue syndrome? A controlled study on maximal exercise performance and relations with fatigue, impairment and physical activity, Bazelmans E et al, Psychological Medicine 2001:31:107-114

The present review examines the cytokine response to acute exercise stress... The main source of the exercise-induced IL-6 production appears to be exercising muscle...Cytokine concentrations are increased in CFS..Exercise-induced modulations in cytokine secretion may contribute to allergies Cytokine response to physical activity, with particular reference to IL-6: sources, actions and clinical implications Shepherd RJ Crit Rev Immunol 2002:22:3:165-182

"These results implicate abnormal immune activity in the pathology of exercise intolerance in CFS and are consistent with a channelopathy involving oxidative atress and nitric-oxide-related toxicity...In CFS patients, the accentuated and prolonged postexercise oxidative stress may be responsible for muscle membrane alterations with the consequences of the impaired membrane excitability described here...Thus, as in inherited muscular dystrophy, an increased level of free radical damage may be a contributor to the underlying defects and symptom presentation. Exercise capacity and immune function in male and female patients with chronic fatigue syndrome Snell CR et al In Vivo 2005:19:2:387-390

It is evident that ion transport and ion channel activity segregate cases from controls and that exercise seems to intensify these differences...Several other conditions have been reported that are known to be caused by abnormal ion channels. These include myasthenic syndromes, multiple sclerosis, and polyneuropathies" Exercise responsive genes measured in peripheral blood of women with Chronic Fatigue Syndrome and matched controls Toni Whistler James F Jones Elizabeth R Unger Suzanne Vernon BMC Physiology 2005:5:5

 

[V99]

The people who work in these clinic have been brainwashed themselves. It is a textbook example of the Milgram experiment.

 

[Orla]

Chapter 8. Designing an Activity Plan Safely

Ok, back to the Liverpool handout. My main overall impressions of this is that they are that they keep harping on as if this programme will definitely bring about a recovery, and that it is perfectly safe. They effectively tell patients to ignore any worsening of symptoms because they argue that these symptoms are just a result of deconditioning, or stress, and that it will go away once they get fitter.

Chapter 8. Designing an Activity Plan – Safely

In this chapter we will help you to design a controlled, gradualy increasing activity plan to help you move steadily forward out of the vicious circle of CFS and recover as others have.

The activity plan used involves gradually building up exercise in addition to the usual daily activities that involve walking and standing (p49).

[Orla - Note: "in addition", so this is on top of your daily activities]

Why is a regular gradually increasing activity plan so important for recovery?

We now know from the medical research:
There is no persistent virus, no muscle disease or damage
There is no hidden disease (p49)

[Orla - Compare those statements with the quotes in my previous post]

However, there are physical changes in the body.

The muscles and cardiovascular system have become deconditioned (p49)

Activity or exercise cannot harm you (50)

The severity of CFS symptoms experienced depends on the amount of regular activity since the start of the CFS (p50).

[Orla - ignoring sudden onset, sudden relapses. Also blaming patients for the severity of their condition ]

What is the safest level to start at?
...In view of:

the research facts about the severity of physical deconditioning
your apprehension
and the daily living activities that still have to be done.

...it is very important to start activity at a level which is well below your current level of ability.

[Orla – Considering all the waffle about deconditioning it is a bit weird that they talk about starting activity at a level well below their current level of ability. People who advocate GET often claim we are "afraid" of symptoms, phobically avoiding activity and doing less than we can, yet Pacing which most patients do or advocate (I mean the correct old-fashioned version of pacing and not the new GET-lite), does not advocate doing less than one can, or a reduction in activity levels, unless the person has been overdoing it, or is having a flare-up or relapse.

I think the GET advocates are saying to do less exercise (than one can) initially, partly because they have this idea of a consistent baseline, and they want the patients to stick to a pretty rigid programme. It is easier to get the patients to buy into the programme if they start at a low level of exercise and build up. If patients didn't do this they might feel really bad straight away and stop. By starting at a lower level than they are capable of, the patient might feel better initially - because they are doing less not more. But they might still think that GET is going to work because they feel better initially. It might take a while before the patient tries to push past their previous level or "natural" ceiling, at which point they start to feel worse (with the exception of the lucky ones who were getting better anyway, and so who can just keep increasing activity levels to normal).

Sometimes, once patients are convinvced that GET is going to work, even when they come up against evidence to the contrary (e.g relapses once they go over a certain level of exercise) they might blame other things for these relapses (e.g. "flu"). They might just drop the exercise, or drop down levels of exercise, and start over again once they feel able. This of course is not graded exercise, as it is not graded if one keeps going backwards and forwards. But sometimes patients do this and still think they are doing GET, and still think it is helping, even if they are not getting any better overall and even getting worse. This is why objective measure of activity are so important (especially in research studies) in order to get a full picture of what is going on with the patient in terms of activity level.

So, this doing less initially thing might be one of the reasons people sometimes feel better initially on GET programmes, they are actually doing less. They might also be pacing better as many of these programmes (including this one) advocate built in rest periods.

That's all I could take for tonight folks, more torture tomorrow. And yes V99 I think some of the people running these programmes are somewhat brainwashed themselves, and they cannot see the evidence as they are so blinded by their thoughts]

 

[V99]

There approach of doing less initilally is very interesting, like you say Orla. Are they trying to keep people on the program for as long as possible, i.e. before exceeding their bodies physical limits.

Also they keep using that word 'circle'. Of course we know there is no vicious cirlce. They appear be stuck in a vicious circle themselves, unable to accept new biomedical evidence. The starting point being their own abberant beliefs about what ME is.

 

[Cort]

Thanks for giving us some documents on this is done. A real learning experience.

 

[Jerry S]

Well done, Orla. Thank you!

 

[willow]

Great work Orla!

Chilling is the right word.

Like Elliot I live in the East Midlands. I've spent years avoiding my GP because of the menancing way she suggests CBT, 'addressing the health of the whole person' etc etc. Frankly every GP I've seen seems to have gone through the same dehumanising process.

So thanks for the detailed info and all the easy to read dissecting- it's great prep.

 

[Orla]

Chapt 8 Continued

Thanks all, it is a bit of work going through it, but also interesting to see how they think and what they tell patients. Also this information was the basis of a GET study so interesting from that point of view (there are some things at the end which make this even more interesting, as I think they encourage the patients to adopt strategies which would make their research look better than it was).

<They appear be stuck in a vicious circle themselves, unable to accept new biomedical evidence. The starting point being their own abberant beliefs about what ME is.>

Yes. Ok, now back to their abberant beliefs. I hadn't noticed this last night

if you start an activity at a level equal to or above your present physical stamina, you will find it virtually impossible to carry on with your activity plan and daily tasks and you will be overwhelmed by symptoms

[Orla - Why would someone be overwhelmed by symptoms if they just did activity at the level they were capable of? This make no sense.]

This situation leads to a lack of trust in the activity plan which may then be shelved. And so the opportunity for recovery is set back or worse still, lost for those who lose all faith in it.

Pacing yourself as athletes do is essential for success

"Athletes at the start of the season do not expect to achieve full potential in the first days or weeks of training.

They start building up fitness and stamina gradually, in a sustainable way over many weeks. They expect symptoms of deconditioning, seeing them as a sign of unfitness, not of physical disease.
They know as stamina and fitness increase muscle pain and fatigue will disappear." (p. 51)

[Orla - they are not advocating Pacing but GET, but every now and again throw in the word pacing. They seem to use pacing to mean having a set plan, and splitting up activites. Pacing can involve splitting up activities, and planning to some extent, but it is really about adjusting activities based on symptoms, which is definitely not what this crowd are on about.

And notice again how they compare our symptoms to those experienced by healthy people. And the little lecture about atheletes not being silly enough to think they have a disease when they get muscle pain and "fatigue", even though it is completely different.]

Control is essential -increases in daily activity or activities should be timed to avoid 'boom and bust' pattern of activity which is associated with bad days. Controlled timed increases in exercise ensure sustained progress (p51)

[Orla - they think we have control over fluctuations. This idea that we can just keep increasing activities until we are up to normal is a myth (unless a person is getting better anyway)]

First impressions of an activity plan

On starting activity you may feel the symptoms of physical deconditioing: dizziness, breathlessness, sweating palpitations, fatigue and later, muscle aches. (p51)

[Orla - note all the symptoms they are putting down to deconditioning]

Patients thoughts about the symptoms are vitally important in recovery.

Those who do not fear the symptoms, understanding that they are unavoidable signs of deconditioing have less nervous system arousal and adrenaline than those who do worry (p51)

[Orla - this is handy, as if a patient tells them they are worried about feeling worse from the exercise plan, they can tell them the symptoms are just signs of deconditioning, and if they worry that they will make it worse. So basically the sympoms can be blamed on the behaviour and thoughts of the patient]

The increase in symptoms is only temporary.
Those who persevere at this difficult point notice that over time as they become fitter, the symptoms of physical deconditioning gradually lift.
As medical research and tests have shown, there is no hidden disease: therefore activity can do no harm when peformed at a level matching your fitness. (p51)

[Orla - this is just so worrying. They are telling patiens to ignore their symptoms, that they will go away eventually. Criticially they keep saying that the exercise programme cannot do any harm, so it could be too late before the patients realise that there is a serious problem, and they might have pushed themselves into being very severe before they realise.]

 

[Orla]

Chapt. 8 Continued

They don't "get" delayed recovery from exercise, both physiologically and symptoms-wise. The symptoms can be worse the day or so after exercise, rather than immediately afterwards, and it can take a few days to recover. So it can take a few days to assess properly whether an activity is really ok or not:

After your timed exercise, the symptoms of deconditioning...should have subsided with ten minutes of rest.

When symptoms have subsided with ten minutes rest, the individual can increase the time of exercise in the graded way... (p52)

Regular rest is vital
Rest both before and after exercise is an important part of the treatment (p52)

[Orla - I wonder if some patients end up resting more in the early stages of the programme? For some people planned rests might not have been part of their previous management? Though their idea of what a rest is a bit odd]

..it is advisable to avoid lying down when resting (p52)

[Orla - !!!! Of course if you are not so severe sitting might be ok for rest, but to advocate against lying down is a bit extreme - it is because of their obsession with deconditioning that they don't want peope to lie down]

How long to rest for?

Avoid resting for longer than 30 minutes (p53)

..even on a bad day getting up regularly from rest and walking around the room even for a short period of time will:

help to control symptoms
start the process of reversing the muscle and cardiovascular deconditioning

Over time as exercise and activity time increase, rest time decreases.
(p53)

 

[Anika]

Mindbending

QUOTE]

[Orla - didn't they just tell us a minute ago that this last thought was an unhelpful thought? It is handy though, they can interpret exactly the same thought as helpful, or unhelpful, as it suits them. Heads we win, tails you lose.]

Orla,

What a great service you have performed, providing the raw material with commentary and background. Part of me wanted to laugh at the ridiculousness of the Manual - what a great sense of parody! But alas, this is too sadly real, not Joseph Heller fiction.

I would really like to see a new topic somewhere on the Forum, in the area of International History and Politics of CFS, perhaps with subtopics such as UK. I think your series of posts should be available as a reference for anyone who ever wants to understand the patient-level efffects of the Oxford definition and the psycho-social school of thought from the U.K.

Please, get your rest, now - but don't overdo it!

Anika

 

[Orla]

Hi Anika, thanks. As you say, some of it just makes me laugh it is so bad, and then I rememer that some people coulod be taken in by it, or some of it, and could be damaged before they realise. But if we didn't laugh we would cry.

<Please, get your rest, now - but don't overdo it!>

I'd better not take too much rest, as it might perpetuate the physical deconditioning which is part of the vicious circle that is CFS

Orla

 

[Orla]

Chapt 8 Cont. Which exercise for recovery?

[Orla - Brace yourselves for this. As I mentioned before, I have put the quoted text in bold, underlined etc. at it is the way it is in the document]

"The type of exercise needed for recovery is aerobic exercise" (p. 53)

Aerobic exercise is exercise where your breathing rate increases and your heart rate increases to deliver oxygen to the muscles to allow them to work efficiently p53)

Orla - compare this with sometimes from the CDC website on aerobic execise

"While vigorous aerobic exercise is beneficial for many chronic illnesses, CFS patients can't tolerate traditional exercise routines. Exercise programs aimed at optimizing aerobic capacity are not
recommended."
http://www.cdc.gov/cfs/cfstreatment.htm

[Orla - Back to Liverpool they want this exercise done a few times a day and on good and bad days!]

Performed several times a day

Performed every day - good days and bad - otherwise the benefits of the activity already gained by your body (and hard effort!) will be lost.

There is no other medicine that can be taken to build up your bodys systems and muscles, other than controlled gradually activity but it does work. (p54)

[Orla - what can I say to this? Absolutely astonishing. Good days and bad?? They are putting pressure on the patients to keep going even if they feel bad, and telling them that they will slip back if they don't. It can be a real problem if patients keep trying to maintain activities when they feel worse]

Which activity for you?

You may wish to choose a selection of gentle and aerobic activities to perform that is spread over the day

Standing sessions, stair exercises, dancing, walking sessions, exercise bike sessions, marching, jogging

Many patients are already standing and walking as part of their present routine: but they are often limited in the length of time that they can perform these actions.

If you wish to increase your stamina, to be able to do these or any other activities for longer periods, you will need to increase the timing of these activities in a controlled way.