PACE Trial and PACE Trial Protocol

[Bob]

It's just awful, isn't it! But, I suppose at least one good thing came out of it all: The results of the PACE Trial blew their quack theories out of the water!

I couldn't quite believe what I was reading in Dolphin's post:

The evidence we have is in fact the opposite: there is no evidence to suggest that an
increase in symptoms is causing you harm. It is certainly uncomfortable and unpleasant,
but not harmful. In fact, there is much evidence to support the alternate view: if you rest too
much, it is the resting that can cause negative changes in the body.

It demonstrates absolutely no insight, at all, into the experiences of patients, along with this:

It can be helpful to use other strategies during a setback, such as muscle relaxation, or gentle stretches that can relieve discomfort. Warm baths can also help your muscles feel
more comfortable. It is also useful to try to avoid extra sleeping where possible, as this can
make it harder for you to get back into physical activity.

So they really believe that we just experience a little muscle fatigue, like someone might after a long walk in the countryside? I guess they do. But how do they come up with this stuff in the first place? It's incredible. And have they never read up on the other symptoms involved in CFS/ME? Have they never actually asked a patient how it feels?

Thanks Dolphin, for posting all of that. I don't think I had read it carefully, if at all.

It was relatively controlled alright. But the theory isn't that one "if there was a flare up after an incremental increase in activity, then the activity levels would be reduced." GET is about breaking that link.

Yes, I can see that my wording there was completely wrong, at least in terms of the theory.

But I thought I had read somewhere that they were far more careful and flexible than the manual suggests.
I remember being quite surprised when I read that they were making so many allowances for setbacks.
But my memory is always very unreliable, and I can't remember what I read or where I read it.
But I thought that they were quite sensitive to setbacks.

If I come across anything, then I'll post it.

 

[Dolphin]

Yes, I can see that my wording there was completely wrong, at least in terms of the theory.

But I thought I had read somewhere that they were far more careful and flexible than the manual suggests.
I remember being quite surprised when I read that they were making so many allowances for setbacks.
But my memory is always very unreliable, and I can't remember what I read or where I read it.
But I thought that they were quite sensitive to setbacks.

If I come across anything, then I'll post it.

Perhaps you read experiences of what actually happened, what individual patients did or what individual physios were advising. I read one patient talk about how she personally was counting house work for her exercise allotment.

 

[oceanblue]

Thanks for this, Dolphin

It was relatively controlled alright. But the theory isn't that one "if there was a flare up after an incremental increase in activity, then the activity levels would be reduced." GET is about breaking that link.

e.g. from the GET participant manual

What is a setback?

You may be familiar with setbacks: in this context, we are referring to an increase in symptoms that occurs, usually after an increase in activity or for some other reason, that significantly affects your ability to undertake activity for as time-limited period. The cause, severity and duration of setbacks can be variable. [..]

Dealing with a CFS/ME setback: what should I do?

During a CFE/ME setback, it is understandable that you might wish to rest and reduce the amount of activity you do, because you don’t feel well and activity feels much harder than usual. This may even be a time in which you become concerned that the increase in symptoms may be causing you damage.

The evidence we have is in fact the opposite: there is no evidence to suggest that an increase in symptoms is causing you harm. It is certainly uncomfortable and unpleasant, but not harmful....

Not sure I have ever seen any evidence of this being put to the test. So there may be no published evidence of harm, but I'm not sure anyone has ever done the research to investigate this properly.

I've always had problems with relapses - not setbacks, relapses where I can lose a year or more of slow progress. This happened when I was under the 'care' of a consultant psychiatrist who simply wouldn't discuss it as it didn't fit her model of the illness... Yes, a psychiatrist in denial, which would have been amusing if she hadn't been making my life so difficult at the time.

...[cont] Dealing with a CFS/ME setback: what should I do?
In fact, there is much evidence to support the alternate view: if you rest too much, it is the resting that can cause negative changes in the body. Resting and withdrawing from activity can also make us feel fed up or worried, and this can also make it harder to continue being active.

The periods of excessive rest can be a time when the body adjusts to the lower level of activity and weakens: if the body weakens further, it can become more sensitive to activity and make overall symptoms worse.

Therefore, during a setback it is useful to maintain as much physical activity as you can. This is to avoid the weakening and tightening of muscles, and the reduction in fitness, which can occur surprisingly quickly (we can lose 10 % of our muscle strength in just one week of bed-rest, or even 1% per day). [...cont]

Worth pointing out that while there is evidence of rapid muscle loss on bed rest, the loss of fitness - or work capability - is much slower, around 27% after 3 months, or 0.3% a day. See below:

Extended bed rest may not have such a big impact on fitness (and function)...

 

[biophile]

In addition to Dolphin's and oceanblue's quotes/comments:

from the GET participant manual:

Any activity carried out to excess and beyond the capacity of that individual’s current physical level has the potential to increase symptoms and make someone feel worse. To ensure that this doesn’t happen, it is essential to start activities at a low level tailored to you and to build up very gradually. Because you are starting at a level you can easily manage (even on your worst days) and then building up slowly at a rate that is right for your body, symptoms are controlled and kept to a minimum.

[...] 4. You will then negotiate an initial activity with your therapist, one that you really enjoy or one that is necessary in your life. This should be an additional activity to your normal, everyday activity. The purpose is to challenge your body slightly so that it strengthens.

5. This activity is started at a level that you know you can do manageably every day, even on your bad days, on at least 5 days out of 7.

from the GET therapist manual:

"Exercise for the following two weeks negotiated and planned."

"If the participant reports an increase in fatigue as a response to a new level of exercise, they should be encouraged to remain at the same level for an extra week or more. They should be reminded that each new level will initially feel harder until the body adapts: they are doing an activity they have not done for a while. The use of the Borg scale can be particularly helpful at this time, for the participant will be able to see their Borg ratings decrease as they maintain the exercise. They can then increase the exercise when the symptoms or Borg scale decreases."

"A participant who is trying to progress too quickly can be warned that a rapid increase can lead to an accumulative effect and an increase in symptoms. Participants such as this can be encouraged to stabilise at a certain level for a while, e.g. 2-3 weeks, to ensure their body is comfortable before the next incremental increase."

Clearly, there is caution here during GET to prevent major relapses. One wonders why a reversal of simple deconditioning should take so long and require such caution, but of course, the authors believe we are deconditioned and focus too much on symptoms, so this would imply that we cannot increase activity too quickly because we aren't fit enough and not used to the sensations of reconditioning.

There is also their statements on what limit they place on safety and symptom exacerbation:

from the complete 'unpublished' PACE protocol:

Examples of expected nonserious adverse events have been identified, and these include:

[...] Transient exacerbation of fatigue or pain, expected as a normal reaction to CBT or GET in patients with CFS/ME, which does not have significant impact upon function (see 14.1.1 (d*))

[...] d) Increased severe and persistent disability, defined as: • severe = a significant deterioration in the participant's ability to carry out their important activities of daily living (e.g. employed person no longer able to work, caregiver no longer able to give care, ambulant participant becoming bed bound); and • persistent = 4 weeks continuous duration

* It says "(a)" but because (a) was "Death" (an absurd threshold for a significant impact upon function) perhaps we were referred to the rest of the subsection or at least (d). Similar threshold in the Lancet WebAppendix.

Since GET has to be in addition to usual activity, and exacerbations should not have a "significant" impact on function, compensation via activity substitution would be cheating. Dolphin mentions that a PACE Trial participant counted housework as exercise, but this may be acceptable if it was in addition to usual activity, especially if the person was sufficiency impaired (like many of us) where housework is always on the important task list.

 

[oceanblue]

Thanks, Biophile, for that additional info. It is slightly contradictory! Here's my attempt to make sense of the conflicting quotes (apart from the fact the different authors probably wrote different sections of the manuals):

1. To begin: establish a stable, manageable baseline - this is common to CBT, GET and Pacing [seems fine]
2. Normal increases: need to be manageable, and adapted to the patient's response [seems fine]
3. Setbacks: Carry on regardless [this is where it goes into denial]

Does this seem about right?

 

[biophile]

It is difficult to establish exactly how much symptom exacerbation GET tolerates. When it is from increasing activity, "Carry on regardless [this is where it goes into denial]" is obviously true to a large extent, but only up to a point (no "significant" loss of function) and a certain duration (as previously quoted, "extra week or more"). It is concerning that they expect patients to maintain as much activity as possible during a significant "setback". This advice is based around their beliefs about deconditioning and boom-bust cycles. But it also may depend on what they mean by as much as possible. In my own experience, persisting for that long can cause more problems, the adverse effects just accumulate into a relapse or perpetuate a relapse, there is no adaptation as hypothesized. It is up to us to figure out how much we can do during a relapse without making it worse in the long run.

Keep in mind that the manuals are guidelines for the therapists who act as mediators, so it is an individual relationship to work out. The therapist can "encourage" the patient to gradually increase activity while claiming it is harmless uncomfortableness while the body adapts, but it is up to the patient to decide how much to tolerate or persist and observe whether it has reduced function. In addition to what I quoted from the GET participant manual, the rest of the section discusses the rate of increase:

(GET participant manual continued ...)

[If it can’t be done every day, then the starting level is too high.]

6. Once this can be done consistently (of course, this should feel OK, because the level you choose is an easily manageable one), the time you do this activity for can be increased slightly. The increases you consider are very small: e.g. a 5-minute walk becomes 6 minutes. An increase from 5 to 10 minutes would not be advisable as this is an enormous 100% increase; our bodies tend only to be happy with increases of around 20%.

7. Getting started might seem difficult, possibly creating manageable feelings of stiffness or fatigue as a normal physiological response to activity. After a few days of maintaining the activity at this new level, these responses subside as the body adapts and strengthens. Gentle stretches can help minimise any stiffness and keep you supple.

8. Keep to this level of activity until you are used to it and it feels OK.

9. Once it feels OK (you’re getting stronger!), another small increase in time can be added.

10. When you can do an activity for a good length of time at a comfortable pace, e.g. 30 minutes, it is then helpful to start increasing the intensity of the activity. This increase is carefully planned with your physiotherapist. This might mean walking slightly faster for part of the time, for example.

This process may take anywhere from weeks to months – the process is slow and steady; patience and keeping your brakes on may be just as important as increasing activity.

My interpretation here is that this 20% increase each step, in multiple steps over time once adapted to the previous step, is only for the dedicated activity chosen for GET, rather than a global 20% increase for all daily activities. As elsewhere eg Nijmegen, the aim of GET is to build up tolerance to an activity and then it is OK to transfer that tolerance to other activities. Using the PACE manual example, if a (moderately affected) patient is truly stabilised and can already do 5 minutes of walking every day without exacerbation, an additional 1 minute increase to test the waters does not sound outrageously dangerous. However, I'd be surprised if most participants' daily activities were so uniform and their symptom severities were so stabilised that occasional and unexpected events and exacerbations did not interfere.

The dubiousness of the underlying rationale to GET is not the notion that mild and moderately affected patients can tolerate a small temporary increase of symptoms (who doesn't do this already?), but that deconditioning is the primary perpetuating factor, that there is no real activity ceiling, and that patients should be able to keep adapting until they have reconditioned themselves into recovery. And LOL again at "this process may take anywhere from weeks to months". As walking was a/the popular GET activity, an average of 35m or ~10% increase in the 6MWD after 12 months of GET is pathetic.

There are uncertainties about the true safety of the trial due to rather higher thresholds for serious adverse events, but it should be acknowledged that there was caution nevertheless, and I think this combined with the non-mandatory nature of the planned increases was instrumental to the trial's relative "safety". Despite the claimed implications of the underlying rationale, there was no published evidence that patients actually increased activity anyway. What probably happened is that most patients did test the waters but found sharks. A slim minority may have benefited much more.

 

[Dolphin]

Since GET has to be in addition to usual activity, and exacerbations should not have a "significant" impact on function, compensation via activity substitution would be cheating. Dolphin mentions that a PACE Trial participant counted housework as exercise, but this may be acceptable if it was in addition to usual activity, especially if the person was sufficiency impaired (like many of us) where housework is always on the important task list.

As I recall, the person lived alone and the amount of housework was 5 or 10 minutes. To me, this seemed very likely to be activity substitution.

Also, there are all sorts of intensity levels of housework. It did not necessarily seem to me to be done at the intensity of a walk.

I have vague recollections of one or more people from the CBT/GET saying exercise was outside the home/something more clear-cut where housework wouldn't have been counted. (not necessarily with regard to the PACE Trial but just a general description of GET).

 

[Dolphin]

After the Fulcher & White (1997) GET study was published, Peter White wrote a piece for the Pulse newspaper for doctors, describing the programme. I don't have the interview beside me so copying an extract from it: he said

"if [after increasing the intensity or duration of exercise] there has been an increase in symptoms, or any other adverse effects, they should stay at their current level of exercise for a further week or two, until the symptoms are back to their previous levels"
White P. How exercise can help chronic fatigue syndrome. Pulse: 1998. June 20:86-87.

 

[Dolphin]

Here is an extract from:

Fulcher, K. Y., & White, P. D. (1998). Chronic fatigue
syndrome: A description of graded exercise treatment.
Physiotherapy, 84, 223–226.

If they complain of fatigue
in response to a new level of exercise, they should
be advised to remain at the same level for an
extra week, rather than progressing the duration,
and to increase the exercise when the symptoms
regress. They should be reminded that each new
level will feel harder initially, until the body
adapts. The key to success is adherence to a structured
and monitored programme, whereby they
do not overdo or exceed their exercise prescription,
even on good days, but where they also
continue to exercise, albeit at a reduced level, on
the bad days.

They do seem to contradict themselves a bit.

 

[Dolphin]

My interpretation here is that this 20% increase each step, in multiple steps over time once adapted to the previous step, is only for the dedicated activity chosen for GET, rather than a global 20% increase for all daily activities. As elsewhere eg Nijmegen, the aim of GET is to build up tolerance to an activity and then it is OK to transfer that tolerance to other activities. Using the PACE manual example, if a (moderately affected) patient is truly stabilised and can already do 5 minutes of walking every day without exacerbation, an additional 1 minute increase to test the waters does not sound outrageously dangerous. However, I'd be surprised if most participants' daily activities were so uniform and their symptom severities were so stabilised that occasional and unexpected events and exacerbations did not interfere.

Yes. And the best way to ensure a person was being consistent would be for them to use actometers/pedometers every day. (Of course, this doesn't control for other types of drains on the body). Except patients handed them back at the start of the trial as I recall.

Also, I think if one wanted to stabilise activity, one would allow patients getting parking badges. This would avoid patients suddenly have to walk further than they might normally do, or plan to do. Without a parking badge, how far one has to walk is going to be random, simply due to where there happens to be a parking space. It's interesting then that the Barts CF team (Peter White presumably) objected to even a "mild" mention of it in the draft NICE guidelines:

On Disability aids and equipment:
[A blue badge is a disabled parking badge to allow somebody park in a disabled parking space]

Draft text:
6.3.6.8 For adults and children with moderate or severe symptoms, provision of equipment and adaptations (for example, a wheelchair, blue badge or stairlift) to allow individuals to improve their independence and quality of life should be considered, if appropriate and as part of an overall management plan.
SH St Bartholomew’s Hospital Chronic Fatigue Services 69 FULL 183 6.3.6.8
“…equipment and adaptations (for example, a wheelchair, blue badge or stairlift)…”We disagree with this recommendation. Why should someone who is only moderately disabled require any such equipment? Where is the warning about dependence being encouraged and expectation of recovery being damaged by the message that is given in this intervention? We are in no doubt that it is a powerful message for a therapist of any sort to provide such aids. Our view is that such aids should only be considered by a multi-disciplinary therapeutic team as a whole, and usually in the context of providing a temporary means for a patient to increase their activity levels. An example would be providing a wheelchair for a bed-bound patient as part of their active rehabilitation programme. In our opinion, such aids should never be seen as a permanent solution to disability in this illness.
NICE response:
We have recommended such equipment only if appropriate, and as part of an overall management plan and as an aid to independence.
Draft text:
1.3.1.8 For adults and children with moderate or severe symptoms, provision of equipment and adaptations (for example, a wheelchair, blue badge or stairlift) to allow individuals to improve their independence and quality of life should be considered, if appropriate and as part of an overall management plan.
SH St Bartholomew’s Hospital Chronic Fatigue Services
Equipment and aids may hinder recovery as much as help it, and their prescription needs to consider both outcomes. We believe disability aids can help a patient towards recovery if their use encourages a widening and increase in their own activities, on a temporary basis, as a means of supporting a rehabilitation programme. They should rarely if ever be used for patients with only moderate disabilities.

 

[Dolphin]

The dubiousness of the underlying rationale to GET is not the notion that mild and moderately affected patients can tolerate a small temporary increase of symptoms (who doesn't do this already?), but that deconditioning is the primary perpetuating factor, that there is no real activity ceiling, and that patients should be able to keep adapting until they have reconditioned themselves into recovery. And LOL again at "this process may take anywhere from weeks to months". As walking was a/the popular GET activity, an average of 35m or ~10% increase in the 6MWD after 12 months of GET is pathetic.

Yes, and just to remind people of what Barts said before (on draft NICE guidelines):

(vii) On Recovery times:
Draft text:
6.3.6.16 When planning a programme of GET the healthcare professional should:
• discuss with the patient ultimate goals with the patient that are important and relevant to them. This may be, for example a 2 x 15 minutes daily brisk walk to the shop, a return to previous active hobby such as cycling or gardening, or, if more severely affected, sitting up in bed to eat a meal.
• recognise that it may take weeks, months, or even years to achieve goals, and it is essential that the therapy structure takes this pace of progress into account.
SH St Bartholomew’s Hospital Chronic Fatigue Services 75 FULL 188 6.3.6.16
These goals should include recovery, not just exercise and activity goals. If it takes “years” to achieve goals, then either the goals are wrong or the therapy is wrong. What other treatment in medicine would take years to work? We suggest “or even years” is deleted. If a therapy is not helping within a few months, either the therapy or the diagnosis or both should be reviewed and changes considered. We suggest that this advice is pertinent to all treatment approaches, not just for GET.
NICE response:
The statistics indicate that total recovery is relatively rare and the GDGfelt that to include recovery as a goal may lead to disappointment. As the goals are patient derived they may be long term. Interim goals would be developed.

So they say one shouldn't talk about a goal taking years - that was what they were objecting to ['If it takes “years” to achieve goals, then either the goals are wrong or the therapy is wrong. What other treatment in medicine would take years to work?']
Recovery is one of the goals ['These goals should include recovery'].
Therefore, they're saying that 12 months (the length of the PACE Trial) is more than enough time to see if recovery occurs or not.

 

[Sam Carter]

Here is an extract from:





They do seem to contradict themselves a bit.

A particular favourite of mine from p17 of the CBT Therapists Manual:

""""""""""
COGNITIVE BEHAVIOURAL MODEL OF UNDERSTANDING CFS/ME

...

What factors contribute to the development of CFS/ME?

...

2. Lifestyle
Fatigue can develop in association with a busy lifestyle. Leading a busy lifestyle where there is little time for relaxation is stressful. Following an illness/infection, a person may feel under pressure to meet their previous levels of commitment whether this is at work or home etc and this may lead to exhaustion. Being too busy is as likely to lead to fatigue as being too inactive.
""""""""""""

 

[Dolphin]

A particular favourite of mine from p17 of the CBT Therapists Manual:

""""""""""
COGNITIVE BEHAVIOURAL MODEL OF UNDERSTANDING CFS/ME

...

What factors contribute to the development of CFS/ME?

...

2. Lifestyle
Fatigue can develop in association with a busy lifestyle. Leading a busy lifestyle where there is little time for relaxation is stressful. Following an illness/infection, a person may feel under pressure to meet their previous levels of commitment whether this is at work or home etc and this may lead to exhaustion. Being too busy is as likely to lead to fatigue as being too inactive.
""""""""""""

Well they [the proponents] can't lose with that one.

 

[Bob]

Thanks, Biophile, for that additional info. It is slightly contradictory! Here's my attempt to make sense of the conflicting quotes (apart from the fact the different authors probably wrote different sections of the manuals):

1. To begin: establish a stable, manageable baseline - this is common to CBT, GET and Pacing [seems fine]
2. Normal increases: need to be manageable, and adapted to the patient's response [seems fine]
3. Setbacks: Carry on regardless [this is where it goes into denial]

Does this seem about right?

I still can't remember why I thought that there was a good deal of flexibility. I might have been making assumptions.

But I have found a passage in the GET therapists manual that makes an allowance for flexibility and a reduction of activities, although it is discouraged:

GET Manual For Therapists

Page 51:

If the plan has been undertaken carefully, with a low baseline and small increments as
planned, it is unlikely to be the exercise programme that is responsible. However,
it is important to ascertain whether any components of the GET programme may have
contributed towards setbacks, and to adapt the plan immediately to avoid difficulties.

A central concept of GET is to MAINTAIN exercise as much as possible during a CFS/ME
setback. This is to reduce the many negative consequences of rest, and to allow the body
to habituate to the increase in activity. If activity and exercise is reduced at this time, the
boom/bust cycle continues, and the body is not able to desensitise to the increase in
activity: which is, of course, an essential component of a graded increase in exercise and
activity.

Although it can be difficult to encourage maintenance of exercise despite an increase in
symptoms, participants usually are able to understand the reasoning behind this and are
often pleased they were able to maintain activity during this time. It is important to explain
that although they have an increase in difficult symptoms, ‘hurt does not equal harm’ (as
you would do with somebody with chronic low back pain).

Some participants may be resistant to this approach, and will wish to reduce both activity
and exercise during this time. If they cannot be encouraged to maintain their previous
level of exercise, then encourage them maintain as much as they are able to, and work
towards building up the activity/exercise as soon as possible. Additional support may be
required at this time.

As there is this allowance, it means that we don't know how much it was put into practise.
So I don't think we should make any assumptions. It might have been allowed far more than they had planned.


This is what it says should happen following a serious adverse event or serious adverse reaction:

14.3 Follow-up after adverse events
After an SAE or SAR, a decision will be made by the centre leader, after advice from the
relevant authorities and the participant's general practitioner, as to whether the participant
should be withdrawn from either their randomised treatment or from the trial, or need an
alteration in their SSMC.

 

[Bob]

A particular favourite of mine from p17 of the CBT Therapists Manual:

""""""""""
COGNITIVE BEHAVIOURAL MODEL OF UNDERSTANDING CFS/ME

...

What factors contribute to the development of CFS/ME?

...

2. Lifestyle
Fatigue can develop in association with a busy lifestyle. Leading a busy lifestyle where there is little time for relaxation is stressful. Following an illness/infection, a person may feel under pressure to meet their previous levels of commitment whether this is at work or home etc and this may lead to exhaustion. Being too busy is as likely to lead to fatigue as being too inactive.
""""""""""""

I've just come across this in the GET therapists manual:

Page 50:

Integrating their exercise into a social or community setting may also be important, e.g.
joining local gyms, exercise classes, walking with friends, or participating in team
sports. If they are keen to aim towards a goal that is beyond their current capability,
discuss how they could increase their physical exercise to achieve their plan. For
example, if the participant wishes to attend a local kick-boxing class, they will need to
build up their aerobic capacity, flexibility and physical strength to be able to achieve an
hour of a high intensity activity.

The mind boggles!!!

 

[Bob]

Dealing with a CFS/ME setback: what should I do?

During a CFE/ME setback, it is understandable that you might wish to rest and reduce the amount of activity you do, because you don’t feel well and activity feels much harder than usual. This may even be a time in which you become concerned that the increase in symptoms may be causing you damage.

The evidence we have is in fact the opposite: there is no evidence to suggest that an increase in symptoms is causing you harm. It is certainly uncomfortable and unpleasant, but not harmful....

Not sure I have ever seen any evidence of this being put to the test. So there may be no published evidence of harm, but I'm not sure anyone has ever done the research to investigate this properly.

Hmm... But that seems to be a fundamental question in relation to ME...
i.e. Do the symptoms of ME indicate 'harm'? And do increased symptoms indicate a higher level of harm?
Maybe any studies that show higher levels of biomarkers (unique to ME) in relation to increased symptoms after exertion, could be considered evidence of this?

At a very basic level, it could be said that a decrease in physical function (or an increase in disability), is evidence of harm.
And if any decrease in physical function corresponds to changes in biomarkers, then surely that's evidence of physical harm.

I think it could also be argued that an increase in distressing symptoms of fatigue is also 'harm', whatever the nature of the fatigue.

 

[Sam Carter]

To develop the theme (of inconsistency) a little further it's worth (re) mentioning this GP training video, which shows a fictional consultation where a "pretend patient" (Vincent Deary, I think) discusses his ongoing problems with ME/CFS. Vincent, in this scenario, is a teacher working four days a week, with a heavy burden of homework to mark in the evenings, so we can infer that his problem isn't deconditioning, but rather doing too much.

The CBT model is a "Goldie Locks" theory - not too much, not too little, just the right amount of activity (a secret formula of rest and exercise known only to the therapist.) Yet this terrible inability to find the correct balance only strikes people after viral infections, people who, without any help from a therapist, have managed their whole lives (through luck one assumes) to not succumb to the curse of doing too much or doing too little, and becoming ill as a consequence.

(It would also be possible to describe the the CBT model as "complete cobblers" and the product of incurious and fixed minds :~)

 

[Enid]

Quite agree SAM - cobblers ducking and diving to hide their total ignorance of a very real disease - Myalgic Encephalomyelitis.

And this from the UK ........... well keep going you guys in the US - not a chance here. It's Peter Pan and Never Never Land here.

 

[Dolphin]

Hmm... But that seems to be a fundamental question in relation to ME...
i.e. Do the symptoms of ME indicate 'harm'? And do increased symptoms indicate a higher level of harm?
Maybe any studies that show higher levels of biomarkers (unique to ME) in relation to increased symptoms after exertion, could be considered evidence of this?

At a very basic level, it could be said that a decrease in physical function (or an increase in disability), is evidence of harm.
And if any decrease in physical function corresponds to changes in biomarkers, then surely that's evidence of physical harm.

I think it could also be argued that an increase in distressing symptoms of fatigue is also 'harm', whatever the nature of the fatigue.

We do have some evidence that symptoms correlate with oxidative stress so they may cause problems, sometimes to a level from which it can't recover in the short- to medium- term (I know I went from mildly affected to severely affected in just over a year and have been stuck severe for 18 years so I think something was damaged).

 

[Enid]

Oh there is damage of course - and in the brain - I came from total disability, unable to think from one moment to the next, unable to recognise the familiar around nor indeed recognise a plug in a sink nor without effort my own name. Now to anyone who has been through it (the worst symptom) violent headaches, something shifting in the brain, switch off of all normal things cognitive, understanding, visual accomodation, heightened sensitivity to any light and sound. Yet though muscles (including heart and lungs and GI tract) at the minimum and having met the mumbo jumbo psyches retained both a superior intelligence and sense of my being in all their crap. BRAIN not mind so entrenched here in the UK by the psychos. I see they are now latching onto Neurology but that is not going to help them with ME (my two admitted they couldn't) - it's takes Immunology, Virology, Generalists and now Oncologists to unravel ME.