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

[Orla]

Chapt 8 cont. Severe patients

[Orla - The GET studies (admitedly with either no objective markers or poor results when they do use them) have been done on mobile, or fairly mobile, non-severe patients.

Personally I think they are suggesting a plan for the severe which is basically inappropriate, and could make the person worse. Most ME/CFS patients, including the severe, are already doing all they can, out of boredom if nothing else! Obviously if someone improves they might start to do a bit more, and increasing activities gradually is probably better, but these people are not talking about waiting until after one feels better to start a programme, but wanting the patients just to start now, as they think our symptoms are the result of deconditioning.

Even though some of the activities probably wouldn't sound like much to them they are talking about the patient doing things like standing, and repetitive actions/exercises. This is in order, in their eyes, to build up strength. Of course this is not necessarily how it works in ME/CFS , as attempts to build up this way can lead to the person becoming even worse/weaker.

In ME/CFS there is an abnormal reaction to exercise that an underlying physical disease is causing. If severe ME/CFS patients are deconditioned it is as because of the condition causing them to be restricted, not the other way around. Muscle wastage is very rare in ME/CFS, and splints and things can be used to stop some problems, rather than exercise. I know someone who did very gentle passive physio for a while and it left them much worse for about a year.]

For those with a very severe CFS problem

[Orla - now CFS is a problem, not an illness? They give examples of what they think are appropriate exercises.]

"Squeezing a stress ball or body scrub sponge every couple of hours starting with five times and gradually increasing the number of repetitions."

[Orla - I know it doesn't sound like much but for someone bed-bound it could be quite strenuous to do this sort of repetitive activity. I would find this quite difficult to do and I am not bed-bound (though I lie down a lot during the day), but even when I was better than I am now I would find ths sort of thing diffcult. If I overdo it with my hands with doing repetitive activities I end up getting muscle twitching. I think a lot of people with ME find repetitive activities difficult, probably partly because of the delayed recovery from exercise.

One thing that bothers me with their stupid suggestions is that if patients are using energy on these exercises it means they don't have it for other more enjoyable things, like spending a short time on a computer, writing to friends etc.]

Raising your arms with the eventual aim of lifting them above your head. Doing this two or three times a day and gradually increasing the number of arm raises." (p55)

[Orla - I don't know about anyone else but I find raising my arms over my head makes me feel fairly instantly weak and dizzy. I think this might have something to do with the pressure it puts on the body to circulate blood, but I am not sure. If I want to feel awful, this is a sure fired way of doing it!

Below: They want the very severe to increase their sitting and standing times gradually. They are assuming that people can gradually increase activity over time, and that there is no ceiling to the person's activity levels (this is a problem with GET, in that it assumes we can just increase to normal)]:

Gradually increase walking time by starting with two paces away from the sofa or bed and two paces back. Over time this can be gradually increased and then timed in seconds. As you improve you can take your walk around the house.

[Orla - If it was that simple everyone would be doing it. They say that the patient might experience some symptoms when they start to do the exercises, but of course this is put down to deconditioning. They claim that the symptoms will subside when the patient becomes fitter and stronger]

...you can expect to experience generalized muscle aches and tiredness

[Orla - Tiredness!!!!]

 

[Min]

It isn't just silly advice, it's extremely dangerous. There are many in the 25% Group left permanently severely disabled from following such advice to exercise.

Many people with genuine ME cease to attend these daft appointments when they find the 'advice' causes major relapses (I was made bedbound for weeks by the numpty at my clinic) and they are left with the people whose fatigue is from psychological disorders, and that do benefit from their advice.

Now I refuse to attend the stupid clinics, and tell them I shall only attend when they offer biomedical treatment.

 

[Orla]

Thanks for the feedback Min. Yes a lot of people end up severe after exercise programmes, even if they were not severe to start off with. I had meant to say about this comment (from the Liverpool handout):

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

If they are going to treat exercise like medicine then they should go all the way. The authorities should collect information on adverse effects and publish the data (and not just accept the potentially manipulated results of people selling the treatment). They should practice informed consent and tell patients of the risks. Patients shouldn't be forced into taking this "medicine" either.

Of course if GET were treated like a medicine it would not get past the first post based on the evidence (or lack of it) from the trials.

Biopsychobble has posted this interesting comment elsewhere:

The 6 minute walk test can be deceptive.
During a GET program I was asked how much worse I felt immediately after a 6 minute walk and to rate its difficulty. They were not interested in how it made me feel 30min and 24 hours afterwards even when I raised the issue. I am therefore suspicious about how this test is used in research.

http://www.forums.aboutmecfs.org/sh...itioning-theory.&p=63194&viewfull=1#post63194

There are 2 other interesting threads here on exercise in then Lifestyle Management section. I have not read all of the comments, but there are some interesting ones on aerobic exercise, which Liverpool really pushes.

http://www.forums.aboutmecfs.org/sh...rotocol-(Staci-Stevens)-Can-anyone-explain-it

http://www.forums.aboutmecfs.org/showthread.php?3866-Weight-Training

Just to clarify I am not advocating ANY exercise programme for ME/CFS, as to me the risks seem to outweight the potential (unproven) benefits, and I have seen too many people ruined by exercise not to be wary of them. I haven't seen enough evidence that any are useful enough to justify the potential risks. Though sometimes patients can seem to exercise fairly safely (though admitedly we don't really know for sure), so it is good if they are going to do it to try to avoid the pitfalls as much as possible. Doing exercise because you can, and feel like it, is different from following a set programme and doing it to treat ME/CFS.

Orla

 

[Orla]

Chapt 8 contin.

Orla - They go through the different types of exercise they are suggesting. I will pick out a few comments from them. Again, the text in bold is how they have it, so you can see the points they really want to emphasise.]

Standing

...As there is reduced muscle strength and the heart is deconditioned in CFS:
Standing is hard work!
But a very valuable exercise to build up (p56)

An Exercise Bike
This has proved to be the most reliable and popular method of aerobic exercise in the early months of recovery (p57)

[Orla - they keep using the word recovery in relation to the programme. Talk about over-selling! They also keep emphasising the programme is safe and will not cause a relapse, and that post-exercise symptoms patients feel are just signs of decondtioning. And they are really pushing aerobic exercise.

They mention starting on the bike at a very low level]

It may not seem much but it will not cause relapse (p57)

Aerobic exercise reaches the depths of physical deconditioning (p58)

After some days you may notice an increase in the symptoms of physical deconditioning (jelly-like, shaky sensations in the legs, pounding heart, breathlessness, sweating, fatigue).

This is because your body is not yet used to such regular activity.

But with your perseverence you will become fitter, reversing the physical deconditioning in your body. (p58)

 

[Orla]

Chapt 8 contin.

[Orla - They are not happy with patients doing just the exercise bike sessions, as they say it is only partially weight-bearing. So for "full recovery" (p58) they also want them to do weight-bearing exercises. They mention walking, stair exercises, marching, dancing or jogging (!) as possible exercises.]

Medicines for other illnesses are taken several times a day.
Steadily increasing activity which is the medicine for physical deconditioning, is no different. If missed, as with other medicines, there is no improvement. (p59)

[Orla - They are comparing GET with medicine again. If this is the case adverse reactions should be reported and studied.

They are also putting the pressure on to do the exercises regularly]

You may feel that doing your daily tasks are enough

Adding an activity to your day is just too much and could set you back (p60)

[Orla - Yep. They say to start at a level well below the current physical ability.]

Controlling daily activities controls the level of symptoms (p60)

[Orla - they definitely have this idea of control and controlled increases in activity being the key to recovery. Of course we don't have control in the way that they think we do.]

Recovered patients found it useful to structure their day, pacing and controlling activity, rest or relaxation. (p60)

[If they are pacing they are not doing GET]

Patients who recovered made the following suggestions:

...Try not to over compensate by resting too much on a bad day (doing a gentle walk outside can help reduce symptoms) (p60)

[Orla - :tear: Remember that this is the place where "recovered" patients are not actually recovered. Now back to the clinics own suggestions]

Home aerobic videotape: Those who build up substantial time dancing or marching may choose to do a home aerobic videotape. (p61)

[Orla - :tear: ]

 

[Orla]

Chapt 8 cont.

Increasing general activities

The aerobic exercises will build up your physical stamina; however, increasing general activities at the same time is an important part of recovery and they too should be increased in a controlled paced manner (p61)

[Orla So they are not happy with just getting the patient to do aerobic exercise they want them to increase other activities in their life at the same time.

I have scanned in page 62 below. It makes out that if patients get frustrated with their lack of progress, that it will increase their symptoms and make exercise more difficult to perfom, and so slow down their recovery. This is one way that they can put the blame on the patient if the programme doesnt work.

I don't have a clue what I am doing with the scanning so hopefully this will work]

 

[gracenote]

However, the muscles and the cardiovascular system are deconditioned.

I'm remembering when I lived in a two story house. There were days when I could barely make it to the top of the stairs. On those days my legs would burn and my heart would pound. There were other days when I could almost run up the stairs with no problem. After living there for 2 1/2 years, I never got to where I could always walk up the stairs without consequence. There was no improvement in my ability to go up the stairs easily despite the fact that I had to go up and down the stairs several times a day. My difficult days were not due to deconditioning but to other aspects of my illness. It came and went.

 

[Orla]

Chapt. 8 con.

Focus on your achievements not on your symptoms or limitation (p63)

[Orla – this will be handy when we make you fill out a questionnaire that makes our trial look like a success]

Symptoms and limitations are temporary (p63)

What to do on a bad day

..If you compensate for these symptoms by taking rest and not doing any of your previous set exercises, you will slow down the process of reconditioning your body which you will have already started with your exercises.

You will stay longer in the vicious circle of CFS and your recovery will be delayed.

In order to recover you have to be prepared to break out of that vicious circle.
Whenever you choose to take that step, you must be prepared for an increase in symptoms (p63)

[Orla - they are putting the onus on the patient to get better. If patients get into a panic about slipping back on the programme and thus lose some of their "recovery" they are more likely to try to stick to the programme even if they get worse. There is no evidence that GET leads to recovery in ME/CFS]

The key to successful recovery is

if possible on a bad day try to do the same amount of exercise as the day before but no more (p64)

It will be a struggle but you will not harm yourself (p64)

Those who have recovered experienced bad days with increased symptoms, but by working through their thoughts about those symptpms, using their understanding of physical deconditioming, they managed to overcome their symptoms and the fears (p64)

[Orla - Just total and utter rubbish. And how can people do the same amount on a bad day anyway? Mind you they coud try and maybe do the exercises some of the time, if they cut out other things.

They follow with a piece about what to do if you get a cold or infection with a temperature. You are allowed to reduce activity, though they still don’t want patients to lie down to rest or sleep during the day when they have a cold or infection]

Restarting exercise after a cold or setback

...Symptoms may increase again causing fear of relapse, but remember these are the symptoms of physical deconditioning, nothing else." (p. 65)

 

[Orla]

Hi Gracenote, yes their theories do not fit the evidence. The deconditioning theory doesn't explain the situation you mention. If you did an activity daily you should be able to do it without a problem eventually if deconditioning was THE issue.

And deconditioning doesn't explain the daily or sudden fluctuations in symptoms and abilities, sudden longer-lasting improvements or worsening of the condition, the fact that patients can sometimes be quite physically active, and even fit, but still have limitations on activity, and still have other symptoms such as neuro-cognitive symptoms, sore throats and so on.

I went through a brief phase over a decade ago where I could do quite a resonable amount of walking (I thought I was getting better at that stage), but I still had physical limitations, still had a major problems standing in a que, still had sleep problems, neuro-cognitive symptoms etc. I know other people who have had this experience. So their theories just don't make sense. I wish they did because if they were right, we would all get better with GET.

Orla

 

[Orla]

Chapt. 8 cont.

It is common for CFS patients to feel that they have been active whilst battling through their condition.
And in fact many have

[Orla - but don't worry, that won't affect our theories]

They actually have been too active for their reduced level of physical stamina. (p65)

[Orla - Heads we win, tails you lose. They are determined that we have a behavioural problem and will force the facts into this idea, no matter what the evidence. And how could someone in the long run be too active for their level of stamina? Doing something on a regular basis ought to raise level of stamina, if that was all that was wrong with you.]

Over time rest and periods of inactivity, even though irregular and infrequent, have caused the running down or deconditioning of the body’s physical systems. (p65)

[Orla - So even if rest periods are infrequent they cause “deconditioning” to the extent of causing ME/CFS symptoms?]

Anxiety also can play its part in these first stressful weeks, triggering increased nervous system activity and adrenaline production causing more unpleasant symptoms in addition to those of physical deconditioning. (p66)

[Orla - In other words we can blame you for not getting better or for getting worse. It is your faulty thinking to blame, or deconditioning, or not doing the programme correctly, or doing too much, or too little....]

from reseach we know that

giving up an activity will only lead further into CFS with its disabling symptoms

Those who persevere in a controlled gradually increasing way do not harm themselves, but start to feel the physical benefit of exercise.
Symptoms do start to lift. (p66)

[Orla - That would be the imaginary research then]

 

[biophile]

Many thanks Orla for your work on the threads "Psychiatric Theory in practice: Liverpool CF/CFS Clinic Patient handout" and "The Psychiatric view of ME CFS - What is it?".

 

[parvofighter]

Thank you Orla

I'd like to echo your sentiment, biopsychobabble (and great name too!). Orla, I totally agree with documenting this claptrap for posterity. Your running commentary also. You've made a prodigious effort to do this, and deserve kudos. Together, we can shut this nonsense down.:Retro smile:

 

[valia]

Thank you Orla, I really appreciate your hard work on this.

Im not sure how to explain what I feel about it other than to say I am gob-smacked, that they have actually put this bull in print.

I have heard that once in these CFS clinics therapist will tell you to push through pain and that there is nothing physically wrong with you etc.....but to put it out in print????

Surely they are blatantly going against all of the evidence to the contrary with no fear of any comebacks.

They claim this so called treatment causes no adverse effects, perhaps for anyone forced to attend one of these clinics we should have a standard solicitors type letter for them to sign accepting responsibility for any harm caused, how could they refuse to sign?

 

[Mithriel]

On another forum, there have been some worrying posts. One woman said her nine year old daughter was referred to a physio by her consultant because she had to start using a wheelchair.

The physio has had her on an exercise bike and a trampoline! She has been unable to get to school or do much since she started.

Another eighteen year old said "moving, walking etc are all very very painful but I'm trying to keep doing a little bit as I know there isn't a reason for the pain really it's just my brain telling me the wrong things. I've been put on the max dose of diclofenac tablets but they don't have much of an effect. My doctor says I have to keep moving every hour and 'go through the pain barrier'."

As Orla says, these treatments should be seen in the same way as medicines and their side effects noted. Any medicine where patient surveys show consistently that over 50% find them of no use or they made them worse would be banned.

And I agree that it is the people "selling" it who are evaluating it - totally unethical.

Mithriel

 

[flybro]

ME/CFS Clinics

Incedently after five years of rapidly detrotiorating health and back and forth to doctors and hospitals, after seeing a CFS item in a health and fitness magazine, I was given a referal to the Wareham Clinic wich took about 3 or 4 months to come thru I think, may be less.

This guy is the thats heads ME/CFS champion for south west UK, name Selwyn Richards and the Wareham Clinic

http://www.therheumatologist.co.uk/

and this is what he is intrested in

http://www.emotionalprocessing.org.uk/sundry files/Researchers.htm

I'm not the only person to have found him arrogant and condescending.

i belive he supplies the dorset group used in Kerrs study,
he is a memebr of the

CFS Research Foundation, 2, The Briars, Sarratt, Rickmansworth, Hertfordshire WD3 6AU, United Kingdom. Tel: 01923 268641. Fax: 01923 260352. Email: cfsresearch@btconnect.com. Registered Charity No. 1011900.​

http://www.cfsrf.com/index.html

along with these guys

Clinical Team

Prof John Axford, Consultant Rheumatologist, St George's University of London
Professor Jon Ayres, Consultant Respiratory Physician, University of Aberdeen
Dr John Chia, Infectious Diseases, ID Med, Torrance, California
Professor Terry Daymond, Consultant Rheumatologist, Brakspear Clinic
Dr David Honeybourne, Consultant in Respiratory Medicine, Birmingham Heartlands Hospital
Dr Janice Main, Consultant in Infectious Diseases, St Mary's Hospital, London
Professor David Nutt, Psychopharmacology Unit, University of Bristol
Professor Robert Peveler, Consultant Psychiatrist, University of Southampton
Professor Basant Puri, Consultant Psychiatrist, MRC Clinical Sciences Centre, Imperial College London
Dr Selwyn Richards, Consultant Rheumatologist, Poole Hospital, Dorset
Professor Andrew Smith, Psychological Medicine, University of Cardiff
Dr William Weir, Infectious Diseases, CFS Clinic, Harley Street, London​

He has a link on his site staright to http://www.afme.org.uk/default.asp action for me.

I would be interested to hear others take on this guy, the group he belongs to and his emotional processing. He worksd privatley and as a consultant for the NHS.

I think he has done or colaborated in some GET & CBT studies.

I'm not sure but I beleive i have seen his name on a paper with wessleys.

 

[Orla]

Thanks all, it has been quite a bit of work, but I think could be useful for people to see what is going on. I scanned in some of the pages from the document, and inserted them as images, in some previous posts here, as it was difficult to see the stuff clearly with the attachments the way I had done it. So if people are interested they can have a quick look back. There is something about it that makes it look worse in print (on their pages).

Valia wrote:

Valia,
I’m not sure how to explain what I feel about it other than to say I am gob-smacked, that they have actually put this bull in print.

They claim this so called treatment causes no adverse effects, perhaps for anyone forced to attend one of these clinics we should have a standard solicitor’s type letter for them to sign accepting responsibility for any harm caused, how could they refuse to sign?

I was also gob-smacked that they put this stuff in print. Shows their arrogance and feeling of security that they cannot be touched.

As for the letter idea, I think it is great. Even a letter a patient wrote themselves could be good. Once it was in print that you expected them to take full responsibility if you got worse, they might back off. Could be a useful way to get out of a GET programme if you didn't want to do it, without any bad comeback.

Orla

 

[Orla]

End of Chapt 8

I am sure you will all be relieved to hear that we are almost at the end of Chapter 8 (which was on the activity plan). Personally I thought that Chapter 8 was the worst, and most dangerous, part of the whole booklet.

On page 67 they have a full page on The benefits of exercise. But they list things that would be benefits for healthy people, but not necessarily people with ME/CFS.

One of them is

Exercise is associated with better mental functioning (p67)

[Orla - But a study by La Manca et al, publised in The American Journal of Medicine 1998 Vol.105(3A) showed that CFS patients showed significant impariment of cognitive processing after exhaustive exercise, when compared with healthy controls of similar aerobic fitness levels.]

I am scanning in the summary of the activity plan from the Liverpool handout (page 68).

 

[Orla]

Chapter 9 How to reset your Biological Clock

In Chapter 9 they focus on sleeping patterns and habits. They think the sleep problems are the result of the patient's own bad habits, and that these habits can be broken out of. Because they think ME/CFS is partly caused by loss of control over "body rhythms" (including sleeping patterns) there is a huge focus in the handout on getting this control back.

I think the sleep advice is the sort of advice which would be suitable for a healthy person who had developed some bad habits and had mild, reversible, sleep pattern problems (e.g. They became unemployed. Got into the habit of sleeping on in the morning and going to bed late at night. The healthy person can correct this sleep reversal easily by going to bed earlier and setting an alarm clock so they will wake earlier. Eventually the healthy person should start to fall asleep earlier, as their healthy body should adapt to this change easily, and they should get a full nights sleep.). But these suggestions won't necessarily work for ME/CFS patients. Sometimes even when patients have to get up early to go to work, they still have trouble falling asleep at a "normal" time.

Of course some people with ME/CFS could get into some bad habits, just like anyone else, so a milder version of the sleep hygiene suggestions might suit some ME/CFS patients to some degree. But it may not do away entirely with all their sleep problems, and the unrefreshing sleep that is so common.

One of the big problems with this document is that gives the impression that these sleep tips will work for everyone with ME/CFS, and will correct their sleep problems if they just stick at it long enough. But I think if everyone with ME/CFS implemented these suggestions to the letter, and kept at it even if they felt worse in the hope that it would eventually work, many would feel worse without any improvement in sleep, and some might even have severe relapses. I know a lot of people who have tried these methods, and they either only helped a bit, or they didn't work at all.

 

[Orla]

Chapter 9

They don't like patients to nap during the daytime. Some patients have no choice but to do this. There is now evidence that a nap during the day might be beneficial even for healthy people.

CFS patients often feel the excessive tiredness they experience during the day necessitates rest. (p69)

[Orla – “tiredness”!]

Sleeping or resting in the day means the body is inactive, therefore adding to overall body physical deconditioning (70)

[Orla - Well I suppose I might have known they would get something on "deconditioning" into this chapter]

They suggest:

Getting up at the same time every morning, no matter what time you have fallen asleep the previous night (p70)

Increasing the amount of time you spend in bed in order to ‘feel better’ actually magnifies the problem (p70)

If because of how tired you feel, you spend time lying-in, try to get up an hour earlier the first week (p71)

[Orla - lying in? This is the sort of expression one would use if talking about what a healthy person does.]

Each following week make your getting up time an hour earlier, so eventually you are getting up at a relatively early time (p71)

[Orla - by an hour a week seems too fast to me, if a person was to try this approach]

..staying in bed for too long helps maintain the symptoms of CFS (p70)

[Orla - Who is to decide what "too much" rest is? I think they would be hard-pressed to find an ME/CFS patient that spends too much time lying down. Mostly the minute patients have a bit of energy they want to get up to do things. It is depressed people who might spend "too much" time lying down.

Many patients either have to rest more than healthy people and/or benefit from lying down more than healthy people. On the idea that staying in bed for too long causes or "maintains" the symptoms of ME/CFS, they are making a statement of their "belief" here that is based on unproven theories]

At first, these new sleeping habits will make you feel more tired, but that will change as your clock starts to reset itself.
You can not harm yourself with this approach (p70)

[Orla - again they are emphasising how safe this is and that the patient cannot harm themselves. Unfortunately this might encourage the patient to ignore their instincts.

They are assuming the body-clock will re-set itself, but that has not been many patient's experience. If it were that simple ME/CFS patients would be doing it successfully for years. Probably a lot of us have tried to re-set our body clocks by various methods without much, lasting, or total success.]

 

[Orla]

Chapt. 9 continued

They really don't want people to nap during the day. This is what they suggest.

Take your mind off the urge to sleep by either:

doing gentle exercise
doing a task
going for a gentle walk in the fresh air
talking to a friend or relative (p71)

[Orla - these people really don't get it do they? A walk when you feel wrecked enough to sleep during the day?]

Such gentle and controlled activities cause arousal of the nervous system and production of adrenaline:
this helps to keep us alert and prevents sleep (p71)

[Orla - Earlier in the document nervous system arousal is put in a negative light, and blamed for our symptoms, now all of a sudden they are seeing it as a good thing]

It can take a time to break this habit but with your determination it is possible. (p71)

[Orla - Again, they are giving the impression if you just stick at it, this will work eventually, thus possibly encouraging people to continue with this process even if they are feeling worse from it]

In the evening...do a slow winding down process before going to bed of a night (p71)

[Orla - Stop the press! An actual bit of good advice for once! They even give a few good tips, like avoiding disturbing phone calls before going to bed. Don’t worry, these breaks into reality are only temporary. They get back to the crazy pretty quickly]

Avoid worrying about not sleeping because this causes further symptoms of adrenaline and arousal. Nobody has ever died from lack of sleep...Lack of sleep only affects your mood not your performance. (p72)

[Orla - I am all for not worrying about not sleeping, well while you are trying to get to sleep anyway, but it is not true to say that no one has ever died from lack of sleep. Sleep deprivation can cause health problems, lead to accidents and so on. And as for the last statment, I think lack of sleep would affect a healthy person's performance of tasks, never mind an ME/CFS person's performance.]

Gradually building up your activity or exercise in the day, will send you to bed with the feeling of normal healthy physical tiredness associated with exercise, rather than that overwhelming tiredness associated with CFS...daytime rest causes increased feelings of fatigue (p72)

[Orla - I told you the sanity wouldn’t last. Tiredness again! I like the way they subtley slip in another reason we should do exercise. As as for day time rest increasing the feelings of fatigue, I don't think I have ever heard and ME/CFS patient say that rest made them feel more exhausted]