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

[Orla]

I started a thread a while ago on the Psychiatric view of ME/CFS

http://forums.phoenixrising.me/index.php?threads/the-psychiatric-view-of-me-cfs-what-is-it.1309/

I thought that it would be useful to give a practical example of how these views influence patient care and medical practice on the ground. I have a copy of written information which is given to patients who attend the Liverpool CF/CFS clinic in the UK. At least some of this information is being used in at least one other UK CFS clinic (and was given to a patient there in the last 9 months).

There is a long booklet, a shorter handout which has pretty much the same information summarised, and other information, such as work sheets for the CBT sessions.

The handout also says:

This booklet was part of the randomised controlled trial of patient education to encourage graded exercise in chronic fatigue syndrome (Powell et al. 2001) (p91)

So it is useful to see the sort of information patients are given on this (and very likely similar) trials. Pauline Powells name is on the front page of this document (more on her below). It is dated 2004. Im (not sure why there is a date anomaly, but maybe they just added to it or made minor alterations??).

The information reflects the biopsychosocial, or psychiatric, view of ME/CFS. They argue that ME/CFS is caused by deconditioning, stress (which includes fear of symptoms, and fear that you might have a serious disease) and poor sleep quality from poor sleep hygiene. They think the sleep problems we have are caused by the patient's own bad habits, and that these problems are correctable mostly through behavioural methods. Personality style is also a factor according to them.

These are a few quotes to give you the flavour of the information patients are given:

We now know from the medical research:

There is no persistent virus, no muscle disease or damage

There is no hidden disease (p49)

And

Your thoughts about these symptoms are very important.

If you

Fear the symptoms
Misinterpret the symptoms as signs of disease or relapse
Monitor the symptoms
Feel frustration with the symptoms & limitations in lifestyle

this will cause further nervous system arousal with more symptoms
that can perpetuate the condition.

Consequently, controlling activities controls the levels of symptoms (p 5, short booklet)

The documents give the impression that, because ME/CFS is caused by deconditioning, stress, and poor sleeping habits, patients have the power to correct these and bring about their own recovery. They go on, and on, and on, about Recovery in the document, as if it is this definitely achievable thing.

I have a funny story about this clinic and recovery. I have heard that as part of the programme people who had previously been on the programme, who were now said to be recovered (by those running the programme), were brought in to meet with patients who were currently the programme. But after talking to them, the patients currently doing the programme realised that these "recovered" patients, were not in fact recovered at all!!

[Please bear with me as it is going take me a while, and quite a few messages, to upload what I have written on this]

 

[Orla]

Some general impressions of the information

They keep waffling on about determination being necessary to stick to the programme. This puts the pressure on patients to try to stick to it. I would worry that if some patients do improve (even if they improve while not sticking rigidly to the programme), they might think other patients' lack of success is a sign of lack of determination, or weakness, on these other patients part. This is one lovely quote:

It requires determination and motivation, but patients who have recovered from CFS have found that it is possible to break such unhelpful habits ( p73)

Would that be the not recovered, recovered, patients I wonder?

In order to appear to have evidence for their theories and programme, they sometimes say something based on the life experience of the healthy population, or other patient groups, so that it looks like they are making sense and "proving" their ideas and programme based on evidence. But some of the “evidence” they are using is totally irrelevant/unproven in terms of ME.

Something else I noticed while reading it is that it gets more aggressive and pushy in tone as it goes on. It starts off by sounding sympathetic, and saying things that patients might take to mean that they are taking them seriously, but as it goes on it gets more pushy and drops the mask a bit in terms of what they are really thinking.

For example they seem to start to refer to symptoms more as “physical sensations” as the booklet goes on (they do use the word symptoms still, but start to use the phrase physical sensations more). This is important as they think we are not physically sick, but are deconditioned etc., so we don’t have symptoms of a disease, just uncomfortable sensations resulting from stress and deconditioning.

Their use of this phrase reminded me of this : “misinterpretation of associated bodily sensations” (from, Richard Mayou, and Michael Sharpe, Treating medically unexplained physical symptoms Effective interventions are available BMJ 1997;315:561-562)

They also seem to start going on more about “tiredness” as the booklet goes on. This gets really irritating after a while.

Their ideas about what causes ME/CFS and how to treat it, has them coming across to me as control freaks. I find the information somewhat hysterical in it's reaction to people maybe spending slightly more time in bed than the average healthy person. You would think all hell would break loose if the person relaxes control over their time asleep/in bed etc.

They also want patients to be very controlled about any activity they do. I think this ideology could actually cause a degree of stress to some patients, as the patient might get stressed about doing less or more on different days, as in real life people don’t do exactly the same thing every day. Here are a few quotes to give you a taste of it (don't worry there will be more later!):

Control is essential (p51)
You cannot afford to break these rules (p89)
Beware of doing uncontrolled activity! (p10 short booklet)
"Try to keep to your plan - stick to your activity and rest times or else you
lose the balance between them and then control of your symptoms." (p11 short booklet)

 

[Esther12]

UPDATE: COPY OF HANDOUT AVAILABLE HERE: http://issuu.com/estherxii/docs/p_powell__liverpool_cfs_centre_patient_handout

It's gone offline at the original link.

I have a funny story about this clinic and recovery. I have heard that as part of the programme people who had previously been on the programme, who were now said to be recovered (by those running the programme), were brought in to meet with patients who were currently the programme. But after talking to them, the patients currently doing the programme realised that these "recovered" patients, were not in fact recovered at all!!

I've met someone who had recovered via GET and CBT, and it was strange speaking to them. They'd say how totally recovered they were, but that a vital part of their recovery was realising that they were not able to do a lot of the things they used to be able to. They now saw their illness as a good thing, having helped them learn to not do too much, where as those who had not been ill would foolishly do much more.

I was rather confused by it all, but didn't want to push them on it as they seemed a bit fragile.

 

[Orla]

Some background info: Job description Controversy

This is a job description for work at this clinic that caused some uproar at the time:
http://www.meactionuk.org.uk/Clinical_Fatigue_Job_Descriptions.htm

Extract from this:

Job title: Trainee Clinical Fatigue Therapist

Chronic Fatigue Treatment Service

For informal enquiries please contact Pauline Powell or Fran Morgan, Senior Therapists

“Psychological treatment involves delivering a highly complex understanding of the psychological, physiological and social factors of CFS to severely disabled, fatigued patients and relatives, in order to change perpetuating illness behaviour and motivate patients to perform a self-managed activity programme, regulate disturbed sleep patterns and modify predisposing personality style.” [Orla - my emphasis]

“As some clients with CFS may be resistant to working in a psychological framework there may be exposure to verbal aggression.”

http://www.meactionuk.org.uk/Clinical_Fatigue_Job_Descriptions.htm

A rather feeble attempt at back-tracking on the verbal aggression bit of the add (not the rest) was issued by Fred Nye Clinical Champion, Liverpool ME/CFS Clinical Network Co-ordinating Centre, (and incidentedly member of the NICE Guidelines Development Group). You can read it here:

http://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind0503a&L=co-cure&F=&S=&P=514

 

[justinreilly]

Orla,

Thanks for your explications of the UK psych view. Wondering if you could email them to see if they are still using the booklet?

 

[Orla]

Publications

Here are some links to articles co-authored by Pauline Powell (whoose name is on the front page of the long document I have, and which was part of the material used in the first study below) and Fred Nye, "Clinical Champion":

Explanation of symptoms focused on circadian dysrhythmia, physical deconditioning, and sleep abnormalities. A graded exercise programme was designed in collaboration with each patient and tailored to his or her functional abilities. Once patients were successfully engaged in treatment, the role of predisposing and perpetuating psychosocial factors was discussed. Treatment was supported by an educational information pack that reiterated the verbal explanations

“Attributing symptoms to ongoing physical disease is an important predictor of poor prognosis"

"The aetiology of chronic fatigue syndrome is controversial, and extensive research has failed to identify any serious underlying pathology. "

Randomised controlled trial of patient education to encourage graded exercise in chronic fatigue syndrome, Pauline Powell, senior clinical therapist a, Richard P Bentall, professor of
experimental clinical psychology, Fred J Nye, consultant physician, Richard H T Edwards, professor of medicine. BMJ 2001;322:387 ( 17 February )
http://bmj.bmjjournals.com/cgi/content/full/322/7283/387

"Results: Poor outcome was predicted by membership of a self-help group, being in receipt of sickness benefit at the start of treatment, and dysphoria as measured by the Hospital Anxiety and Depression scale. Severity of symptoms and duration of illness were not predictors of response."

"Conclusions: Poor outcome in the psychological treatment of chronic fatigue syndrome is predicted by variables that indicate resistance to accepting the therapeutic rationale, poor motivation to treatment adherence or secondary gains from illness."

Predictors of response to treatment for chronic fatigue syndrome RICHARD P. BENTALL, PhD, University of Manchester ; PAULINE POWELL, PhD and FRED J. NYE, FRCP, Royal Liverpool Broadgreen Trust ; RICHARD H. T. EDWARDS, FRCP (retired).
The British Journal of Psychiatry (2002), 181: 248-252
http://bjp.rcpsych.org/cgi/content/full/181/3/248

"Our findings support the long-term efficacy of treatments for chronic fatigue syndrome that incorporate graded exercise, including cognitive-behavioural therapy (Bonner et al, 1994; Deale et al, 2001). The effectiveness of such treatments may reflect the way in which they directly address physiological factors that can perpetuate the condition. Although there is no evidence of consistent pathological changes in chronic fatigue syndrome, there is evidence of a disturbance in bodily functioning
involving cardiovascular and muscular deconditioning (Edwards et al, 1994;De Lorenzo et al, 1998). There is also evidence of sleep abnormalities (Morriss et al, 1997), mild cortisol deficiency (Demitrack et al, 1991) and desynchronisation of circadian rhythms (Williams et al, 1996) in patients with the syndrome. In the absence of an appropriate explanation, the subsequent symptoms can be misinterpreted as signs of an underlying pathological condition leading to reduced activity and chaotic sleep patterns, which perpetuate the syndrome." [Orla - my emphasis]

Patient education to encourage graded exercise in chronic fatigue syndrome 2-year follow-up of randomised controlled trial. Pauline Powell, PhD, Richard P. Bentall, PhD, Fred J. Nye, MD FRCP and
Richard H. T. Edwards, MB PhD FRCP

The British Journal of Psychiatry (2004) 184: 142-146
http://bjp.rcpsych.org/cgi/content/full/184/2/142

 

[valia]

I've met someone who had recovered via GET and CBT, and it was strange speaking to them. They'd say how totally recovered they were, but that a vital part of their recovery was realising that they were not able to do a lot of the things they used to be able to. They now saw their illness as a good thing, having helped them learn to not do too much, where as those who had not been ill would foolishly do much more.

I was rather confused by it all, but didn't want to push them on it as they seemed a bit fragile.

So am I

 

[Orla]

Some more interesting background on Pauline Powell: FINE Trial

[Hi guys thanks for your comments. I will answer again, just want to get some of this stuff up. Some of the information I am posting may seem irrelevant now, but hopefully once I post up quotes from the booklet it will become more obvious why I am posting this information. In my next post I will start posting information on the Liverpool handout, so some people might prefer just to skip down to that]

Pauline Powell (who wrote the main booklet I have from Liverpool) was also part of the research team associated with Alison Weardon of Manchester University, who is the lead on the MRC funded FINE (Fatigue Intervention by Nurses Evaluation) trials. Some information on FINE here

http://www.investinme.org/Article-015 FINE Trials.htm

MRC:

The trial will also evaluate whether the delivery of pragmatic rehabilitation can be easily taught to qualified nurses without the need for lengthy and expensive training. If successful it could provide an invaluable addition to the help on offer in a primary care setting

and

'The Oxford criteria will allow researchers to generalise their findings to the largest possible number of people with CFS/ME and ensure the trial can recruit enough people to give meaningful results.'

and I have just seen this

Fatigue Intervention by Nurses Evaluation – The FINE Trial

We previously reported on a large-scale hospital-based trial in Liverpool, with out-patients suffering from CFS/ME, of a treatment termed "pragmatic rehabilitation" [26]. The treatment is based on a model proposing that CFS/ME is best understood as a consequence of physiological dysregulation associated with inactivity and disturbance of sleep and circadian rhythms [27]. We have argued that these conditions may be provoked by a number of biological and psychological factors but are often maintained by illness beliefs that lead to exercise-avoidance. The essential feature of the treatment is the provision of a detailed explanation for patients' symptoms, couched in terms of the physiological dysregulation model, from which flows the rationale for a graded return to activity. [Orla - my emphasis]

Sixteen half days of training [of nurses] in the techniques of pragmatic rehabilitation were delivered over a twelve week period by members of the trial team, working with the extensive training materials developed by Dr. Pauline Powell.... A particular focus of the pragmatic rehabilitation training was on teaching the nurses to work with the patient manual and on equipping the nurses with the necessary skills to enable patients to use the manual effectively. [Orla - my emphasis]

...The first intervention session is taken up with providing patients with a detailed explanation of their symptoms in terms of such physiological explanations as circadian rhythm desynchronisation, disrupted sleep patterns, neuro-endocrinological disturbances, and cardiovascular and muscular deconditioning. The somatic manifestations of anxiety are also explained to the patient.

...PP developed pragmatic rehabilitation treatment and the patient pragmatic rehabilitation manual in secondary care, participated in the training of the nurse therapists, and advised on the adaptation of pragmatic rehabilitation for the primary care setting. All authors read and approved the final manuscript.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1456982/?tool=pubmed

and this is an experience of someone who was on this FINE trial (this is just an extract. The full thing is quite short so worth clicking on the link):

“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.”

The trial totally disregards ME/CFS as an illness. It is based on a theory that our symptoms are due to deconditioning and maladapted beliefs about exercise...

“Another example of my data not being represented properly: I suspended from University a couple of weeks before the start of the program and had started to improve from the rest. I continued to improve for a little while into the program. I made sure I highlighted that the cause of this improvement could be the effects of the program, or the rest I was getting. They were not interested in this - the fact that there was basically another aspect of my life that could be causing changes in my condition.
http://www.investinme.org/Article-015A FINE Trials-Alice.htm

 

[fingers2022]

Here are some links to articles co-authored by Pauline Powell (whoose name is on the front page of the long document I have, and which was part of the material used in the first study below) and Fred Nye, "Clinical Champion":

Give me a break please, Orla. I'm still trying to stop the LP/children ME/Esther Crawley stuff, and now you put this in front of me :innocent1::tear::sofa::victory::headache::horse::horse::horse::horse::horse::horse: (what's the etiquette on using the :horse:???).

Could I be banned for using too many contiguous emoticons? I claim mitigating circumstances.

OK, is the common denominator here the initials PP?

I need to get myself onto one of these programmes. If it's Liverpool I could stay with my folks. Presumably I have to go via my GP? Any ideas?

If Fred Nye is Clinical Champion, how do I qualify for the Clinical category so that I can have a crack at his title?

 

[Orla]

Liverpool CF/CFS clinic document

Now down to business.

The main booklet is divided into sections.

Part 1: Understanding Chronic Fatigue Syndrome

and

Part 2: The Treatment Plan for your Recovery

As the document is very long I will just post up some quotes from it, and give page numbers. I will scan in some pages. Some pages have diagrams so I will post some of those, and some pages are so bad that it is worth posting them in full. I can scan in and upload shorter document again, which is basically a summary of the longer document.

This is going to be quite long but it is not a heavy read. It is really irritating though. I am going to try to just post everything as is in the document (e.g. with the bold text the way they have it etc.) so people get a feel for the tone of it. I will put some comments of my own between brackets.


Cover page:

Chronic Fatigue Syndrome:

What you need to know to get better

This booklet has been written with the help of patients who have made a full recovery from Chronic Fatigue Syndrome. Facts and information which were important to them in making this recovery have been included. The booklet includes the most up to date medical research available on Chronic Fatigue Syndrome from universities and hospitals around the world. It will take some time for you to read and understand how Chronic Fatigue Syndrome affects your body and the steps you can take to begin the road to recovery.

...Chronic Fatigue Treatment Programme
Infectious Diseases Unit, [Orla - It is a psyche programme though in this unit]
Royal Liverpool University Hospital, Liverpool.

When you see what is in it you will see how ridiculous the above statement is.

The next page is the Contents page, which outlines the chapters. I am going to attach it below , as it gives you an idea of what will be in the document.

 

[Orla]

Fingers wrote

<Give me a break please, Orla. I'm still trying to stop the LP/children ME/Esther Crawley stuff, and now you put this in front of me>

Lol! I know how you feel. Sometimes it is just one thing after another. I had been meaning to post on this for a while but I kept gettig side-tracked for one reason or another. It has been driving me crazy the last few days working on it so I just wanted to spread the joy

<OK, is the common denominator here the initials PP?>

:Retro wink: it took me a while to get that one.

<I need to get myself onto one of these programmes. If it's Liverpool I could stay with my folks. Presumably I have to go via my GP? Any ideas?>

Don't worry, you will be able to fashion your own programme once I post up the "cure" details.

<If Fred Nye is Clinical Champion, how do I qualify for the Clinical category so that I can have a crack at his title?>

He is retired now.

Esther, yes it is strange that sometimes people say they are recovered when they are really not. Having seen this document I can understand it a bit better. Of course, people are desperate to be well, and want to believe they can bring about their own recovery, so that plays into it too.

Justin, I doubt somehow they will be overly forthcoming with me, but I might be able to find out through someone else. There is no reason to think their attitude has changed. I got the information (from 2 people) late 2007, early 2008. I was told recently that documents for patients from Liverpool are being used in another clinic (a patient was given this information in the last 9 months).

Orla

 

[Orla]

Chapter 1: What is Chronic Fatigue Syndrome?

Chapter 1: What is Chronic Fatigue Syndrome?

Those who have a physically active lifestyle and those who don’t like being ill, may not give themselves time to recover fully (p.4)

[Orla – who likes to be ill?? As the booklet goes on, ME/CFS patients are put in a catch 22 position. On the one hand here we are criticised for not resting and on the other we are criticised for resting. They mostly criticise the resting, or what they see as over-resting]

A pattern develops of activity leading to symptoms and rest relieving symptoms. If this continues some activities become limited or even avoided.

When the symptoms are persistent you may monitor and focus on them, becoming concerned about them and what they mean.

The longer the duration of the illness the more difficult it can be to remember what it is to feel well. (p4)

A pattern develops of irregular activity, where life seesaws between doing too much activity and overwhelming fatigue that necessitates rest. (p5)

This pattern of “boom and bust” is well recognised in some CFS patients. (p5)

[Orla - It is a bit of a myth. There is no evidence of large variation in patients activity levels. An interesting quote from a study, incidentedly, done by people from the psycho-social school of thought on ME/CFS: "Compared to healthy controls, no indication was found that the CFS patients as a group were characterised by a high number of large day-to-day fluctuations in activity." van der Werf SP, Prins JB, Vercoulen JH, van der Meer JW, Bleijenberg G. Identifying physical activity patterns in chronic fatigue syndrome using actigraphic assessment. J Psychosom Res. 2000 Nov;49(5):373-9.
http://webdoc.ubn.kun.nl/mono/w/werf_s_van_der/deteancoo.pdf
or
http://www.me-cvs.nl/index.php?pageid=4449&printlink=true&highlight=maastric ]

[Back to Liverpool document, below]

Where does Chronic Fatigue Syndrome leave you?

Because the symptoms are so real and disabling, the fear and uncertainty grows. (p5)
Having an understanding of CFS will help you to see the purpose and necessity of the treatment enabling you to recover as others have done. (p5)

 

[V99]

Brainwashing comes to mind. My question to them would be, how is it possible that my health has improved through pacing and rest, without ever having met one of your brainwashed theapists or even stepping though the door to a clinic? According to them this is not possible.

 

[Orla]

Chapter 2: Muscle Function in Chronic Fatigue Syndrome

I Muscle Research
...Research has shown

...1. Persistent viral infection does not play an ongoing part in the symptoms of CFS... (p7)

Extensive investigations of body tissue samples have shown no evidence of persistent viral infection in CFS patients. (p 7)

2. No evidence of other kinds of disease has been found in the muscles of CFS patients” (p7)

[Orla - There was some evidence for persistent viral infection then, so even if people argue that the evidence was unclear, disputed, not totally proven, or whatever, the statement they make is far too definite considering that there was at least some evidence of persistent infection, see quote box below. Also, it would be a bit narrow to just look at evidence of viral infection in the muscle and not elsewhere, as if evidence of viral infection elsewhere in the body was irrelevant. There was also evidence for ]immune dysfunction, so persistent infection was not the only issue.]

Our data confirm the organic basis of the illness (and) suggest that it is associated with disordered regulation of the immune system and persistent viral infection” The postviral fatigue syndrome – an analysis of the findings in 50 cases PO Behan, WMH Behan, E J Bell Journal of Infection 1985:10:211-222

“These data show that enterovirus RNA is present in skeletal muscle of some patients with postviral fatigue syndrome up to 20 years after onset of disease and suggest that persistent viral infection has an aetiological role. These results provide further evidence that Coxsackie B virus plays a major role in ME, either directly or by triggering immunological responses which result in abnormal muscle metabolism”. Postviral fatigue syndrome: persistence of enterovirus RNA in muscle and elevated creatine kinase LC Archard, NE Bowles et al JRSM 1988:81:325-331

“A concurrent immunological disturbance is likely to be associated with the persistence of viral antigen...The finding of significantly increased numbers of peripheral blood mononuclear cells that express class II histocompatibility antigens (HLA-DR) in our patients implies immunological activation of these cells” Immunological abnormalities in the chronic fatigue syndrome Andrew R Lloyd, Denis Wakeford, Clement R Broughton and John M Dwyer Med J Australia 1989:151:122-124

“Neurologic symptoms, MRI findings, and lymphocyte phenotyping studies suggest that the patients may have been experiencing a chronic, immunologically-mediated inflammatory process of the central nervous system...Immunologic (lymphocyte phenotying) studies revealed a significantly increased CD4 / CD8 ratio. Taken together, the controlled studies cited above and many others, seem to indicate an immune system chronically responding to a ‘perceived’ antigenic challenge” A chronic illness characterized by fatigue, neurologic and immunologic disorders, and active human herpes Type 6 infection Dedra Buchwald, Paul Cheney, Robert Gallo (co-discoverer of the HIV virus), Anthony L Komaroff et al Ann Intern Med 1992:116:2:103-113

I got these quotes from http://www.meactionuk.org.uk/Organic_evidence_for_Gibson_Large_Print.html

 

[Orla]

Chapter 2 continued, piece on muscle recovery after exercise

the long-term recovery of muscles in CFS patients was identical to normal people and complete by 24 hours following exhaustive exercise (p8)

[Orla - They neglect to mention this study below]

Demonstration of delayed recovery from fatiguing exercise in chronic fatigue syndrome, Lorna Paul Leslie Wood Wilhemina M.H.Behan William M.Maclaren, European Journal of Neurology 1999:6:63-69

"Patients with CFS reach exhaustion more rapidly than normal subjects, in keeping with an abnormality in oxidative metabolism and a resultant acceleration of glyolysis in the working skeletal muscles… The results demonstrate that patients with CFS fail to recover properly from fatiguing exercise and that this failure is more pronounced 24 hours after exercise."

… Indeed, while the recovery of force in the controls was complete by 200 minutes post-exercise, “an even further decline in force” was observed among the CFS group at 24 hours post-exercise.

This delayed recovery is unlikely to be the result of de-conditioning.

The findings support the clinical complaint of delayed recovery after exercise in patients with CFS.

…. The authors note that recent experiments by others (Bouwer & Packer: Corticospinal excitability in patients in patients diagnosed with CFS. Muscle Nerve 1994: 1210-1212; Samii et al: Decreased post-exercise facilitation of motor-evoked potentials in patients with CFS or depression. Neurology 1996:1410-1414) have demonstrated a significant reduction in motor evoked potentials following exercise in CFS patients compared with controls. This is in keeping with a reduction in the excitability of the motor cortex and could account for a reduction in voluntary motor output leading to the decline in muscle force observed in this study.

 

[Orla]

V99, yes, wait till you see the rest of it, especially the stuff about having the right thoughts for recovery. Big time brainwashing. As you say, many patients can experience improvement through rest and pacing, and basically managing themselves, which is the opposite of what should happen according to these people's theories.

 

[Hope123]

I've met someone who had recovered via GET and CBT, and it was strange speaking to them. They'd say how totally recovered they were, but that a vital part of their recovery was realising that they were not able to do a lot of the things they used to be able to. They now saw their illness as a good thing, having helped them learn to not do too much, where as those who had not been ill would foolishly do much more.

I was rather confused by it all, but didn't want to push them on it as they seemed a bit fragile.

Well, if that individual feels helped by it, more power to them and I wouldn't push ask them further as it might cause them distress. They've probably come to some mental acceptance of their illness much like people with other chronic illnesses. But, different from CFS, many people with other chronic illnesses who accept their illness nevertheless still consider themselves ill.

A large problem with many studies that look at improvement or recovery in CFS is that they don't define these terms well and often use only subjective meaures; when measures like "return to full-time prior work" or "ability to do things comparable to those of your age/sex who are healthy without any symptoms or relapse" are used, the % recovery/ improvement is much less.

 

[Orla]

Mitochondria

Although no disease was found, a decrease in the number of cell mitochondria or ‘powerhouses’ and their enzyme activities have been found in the muscles of CFS patients.

Healthy people who were sedentary also had fewer mitochondria; however, inactive people can increase their muscle strength and endurance, by exercising. (p8)

Tests show that patients who ignored pain and discomfort and went on exercising in a controlled gradually increasing manner improved their mithochondrial function and so had less trouble with day to day physical activities” (p8)

The references they give here are GET studies, not biomedical ones. I have read the first one and I cannot see any evidence that they did a study of the mithchondia. These are the 2 studies they cite:

Patient education to encourage graded exercise in chronic fatigue syndrome 2-year follow-up of randomised controlled trial
The British Journal of Psychiatry (2004) 184: 142-146
Pauline Powell, PhD, Richard P. Bentall, PhD, Fred J. Nye, MD FRCP and Richard H. T. Edwards, MB PhD FRCP
http://bjp.rcpsych.org/cgi/content/full/184/2/142

Wallman KE, Morton AR, Goodman, C, Grove R, Guilfoyle Am (2004) Randomised controlled trial of graded exercise in chronic fatigue syndrome Med J Australia 180 (9): 444-8.

 

[Orla]

Summary of Muscle Research

Summary of Muscle Research

1. No persistent viral infection or muscle disease has been found in CFS patients.

2. The muscles of CFS patients behave normally in tests

3...less active mitochondria...seems to be a consequence of periods of rest and reduced levels of activity caused by CFS.

4. Muscle strength decreases with rest: this can result in dizziness, feeling faint and difficulty exercising.

Taken togegther, this evidence indicates that muscle changes found in CFS patients are not the cause of the condition. Rather, they are the consequences of rest and reduced activity levels caused by the condition. (p9)

[Orla -What can I say....]

 

[Orla]

Chapter2 , section II

II. The effects of rest and reduced activity on the body

Over time, reduced activity and rest cause physical changes in muscles and the body. These changes cause physical sensations and symptoms. These symptoms are not in the mind. (p10)

[Orla - notice the use of the term physical sensations. I hope you like it because you are going to hear it quite a few times!]

..Within 24 to 48 hours of bed rest blood is redistributed from the extremities of the body to the central body compartment. In response there is a reduction in the volume of blood plasma...The reduction in the volume of blood plasma results in a decrease in the amount of blood returning back to the heart.

[Orla it seems to be mostly red blood cell mass that is reduced in ME/CFS, and I dont think this is so much affected by deconditioning Someone correct me if I am wrong. I think I remember David Bell saying this in a lecture he gave.]

Consequently, less blood goes to the brain causing dizziness on standing. This process also occurs with prolonged chair rest of 4-10 days (p10)

[This document is the first time I saw chair rest referred to. Note that blood clots seem to be very rare in ME/CFS, so patients are moving around a little, and not subject to some of the effects of lack of movement. I think some of the research on bed-rest etc. might be on paralysed patients, or ones who are very immobilised, which is a bit different from ME/CFS. I am just throwing out these ideas]

After 8 days of chair rest there is a reduction in the capacity of the body to do physical aerobic work. (p10)

..After 3 weeks of bed rest, the heart rate increased by approximately half a beat per minute per day for each day of rest in healthy individuals (p10)

However these changes are reversible (p11)

In CFS patients, no actual abnormalities or disease of the heart and lungs have been found.

However, there is evidence of cardiovascualar deconditioning similar to that seem in resting healthy individuals...

2.Following rest, there is a drop in blood pressure on standing up that causes dizziness

Doctors calls this type of difficulty postural hypotension'

[Orla Note: this is not the same as Postural Orthostatic Tachycardia Sydrome or Neurally Mediated Hypotension which many people with ME/CFS have, and which might be more of a problem for them than postural hypotension. Also Postural hypotension happens immediately on standing, but POTS or NMH symptoms can come on more gradually, or happen at at any time during standing]

Rest does not have to be taken for a prolonged period for the effects of low blood pressure and increased heart rate to occur on standing.

These effects were seen after only four days of chair rest in healthy in healthy individuals who experienced dizziness, nausea, vomiting and fainting. (p 11)

Visual problems can be caused by bed rest (p12)

[Orla - I promise I am not adding things just to make them look silly!]

Reduced activity and period of rest cause reduced tolerance of activity or exercise (p12)

This increased feeling of effort on exercise has also been seen in healthy people who become less active.. p11

[Orla - they are saying sedentary people feel like we do!! Also note, they are not saying we have to put an increased effort into things, but that we have an increased feeling of effort]

Mental changes also follow periods of inactivity (p13)

Rest with no intellectual stimulation has a dulling effort on intellected activity. Studies show it leads to a reduction of intellectual function, and speed of perception. (p13)

[Orla Seriously, these people are just trying to pull my leg now saying concentration problems are the result of inactivity.]

How is this research related to CFS?

Most patients with CFS are not bed or chair bound for prolonged periods.

Most CFS patients are still active (p13)

[Orla - dont worry, these inconvenient facts wont affect their theories!]

...over the months or years patients have had to reduce their physical activities in order to manage essential commitments and cope with symptoms. (p13)

[Orla dont mention sudden onset, or sudden improvements, or worsening, of condition]

Although rest is the right treatment in the first stages of viral infection or illness, once the body temperature is normal the virus has gone and a gradual return to normal activity is appropriate (p13)

Fortunately, all of the changes listed above can be reversed by a therapeutic activity programme (p14)