OFFICIAL UK 'CFS/ME' PACE TRIAL Manuals are NOW ONLINE.

[Anglia ME Action (UK)]

OFFICIAL UK 'CFS/ME' PACE TRIAL Manuals are NOW ONLINE.

http://tinyurl.com/3xj3uke
http://tinyurl.com/37h35ca

"Evidence from research trials has indicated that patients who are in receipt of benefits or permanent health insurance do less well than those who are not in receipt of them"
[Extract/quote from Official Pace trial Manual - See below]


INTRODUCTION:

Manuals for the PACE Trial have been placed on a file-sharing facility.

In my view the documents illustrate how psychological and emotional pressures have been applied to individual insecurities and scientific ignorance surrounding ME/CFS, providing insights into the nature and agenda of previous CBT and GET trials, and a view of the disease along with a seemingly acceptable way to treat and portray lay people with ME/CFS. The PACE documents and Study are endorsed/sponsored in the UK by the Medical Research Council (MRC), the Department of Health (DoH), the Department of Work and Pensions (DWP) and the Scottish Chief Scientist Office.

The files include the official/internal Manuals of the Principle Investigators of the psychosocial UK 'CFS/ME' PACE TRIAL. No ME/CFS activist can afford not to download these large documents, circulate them widely and comprehensively examine them. In the manuals' author's own words, they lay bare what British ME sufferers are about to be exposed to, what underpins that which is likely to be used by NICE to endorse its 'CFS/ME' Clinical Guideline 53 in its imminent internal review, and gives insight into what may lay ahead for patients in other countries that follow the UK model.

There are two separate large files, both of which contain the same set of Official PACE Manuals along with additional and respectively different sets of relevant bonus materials. They are available to be downloaded using bit-torrent / peer-to-peer file-sharing.

Either Google "XMRV - THE UK PACE TRIAL..." or go to the short URLs given below:

File-#1: XMRV - The UK PACE TRIAL [1]
http://tinyurl.com/3xj3uke
[IMPORTANT - Click on the small green link at this peer-sharing website entitled "DOWNLOAD THIS TORRENT", don't, repeat don't click on the Large green button with the word "Download" on it as this directs you away from the site.]

File-#2: XMRV - UK PACE TRIAL [2]
http://tinyurl.com/37h35ca
[IMPORTANT - Click on the small green link at this peer-sharing website entitled "DOWNLOAD THIS TORRENT", don't, repeat don't click on the Large green button with the word "Download" on it as this directs you away from the site.]

I am very grateful indeed to those making these files available to the ME community.



EXTRACTS/QUOTES FROM THE PACE MANUALS:


Standardised Specialist Medical Care Page 33 -

"If participants are insistent that there is an ongoing "physical" problem, it is rarely helpful to directly challenge them on this point. It is important that you acknowledge that their illness is real but its effects can be reduced by the way they manage it."


Adapted Pacing Therapy Therapists Manual Page 55 -

"A patients typical day will often look like the record shown below.

Time Activity

9.00 am Get up, Take 1-2 hours to come round, Get washed, dressed. Have breakfast. Feed dog, make packed lunches

10.00 - 12 noon Do various bits of housework

1.00 pm Prepare and eat lunch

2.00 pm 5.00pm Rest, often sleep

5.00pm Walk dog (sometimes)

6.00 - 8.00 pm Feed children, talk to family, watch TV

9.0 pm Go to bed take 1-2 to sleep"


CBT Therapists Manual Page 20 -

"Perfectionism

Just as personality can be a factor in contributing to the development of CFS/ME, it can also be a perpetuating factor. People who are perfectionists are likely to have more difficulty in taking breaks or rests in the day as they feel that they are "wasting" time and "should" be doing something useful. This may lead them to adopt a "boom and bust" approach to activity which makes it difficult to establish any sort of routine."


Adapted Pacing Therapy Therapists Manual Page 42 -

"Is this a cure?

Be honest, the answer is no"


CBT Therapists Manual Page 125 -

"Many people have successfully overcome CFS/ME using cognitive behaviour therapy, and have maintained and consolidated their improvement once treatment has ended"


GET manual Page 55 -

"It should be explained that in order for the body to continue strengthening, and for changes to be maintained, that exercise should form a regular part of their lives from here onwards.

The long-term benefits of exercise for prevention of CFS/ME specifically, and other diseases in general can be emphasised."


GET manual Page 59 -

"In contrast to CBT, it is important that you do not consciously provide cognitive interventions or interpretations e.g. suggest that being able to exercise more may mean that there cannot be a persistent viral infection in their body."


Pace Trial Management Group Page 31 -

"Graded Exercise Therapy
Information for Participants

There is nothing to stop your body from gaining strength and fitness, as long as it is done in
a carefully monitored way, relating directly with your own particular circumstances started and progressed at the right rate for you. Good luck!"


Pace Trial Management Group Page 84 -

"Your improvements will continue as long as you maintain your level of activity and exercise.
It is crucially important not to stop exercising after discharge, but rather to continue
maintaining or building upon the changes you have made.

Establishing a routine of physical activity and exercise is essential to keep your good health and to prevent symptoms in future."


GET manual Page 23 -

"The more severely disabled group of CFS/ME patients were excluded from previous studies as the studies involved an exercise test that may have been too challenging.

However due to greater levels of inactivity in the more severely disabled group, the deconditioning model should apply equally if not more to these patients."


GET manual Page 50 -

"A central concept of GET is to MAINTAIN exercise as much as possible during a CFS/ME
setback."


CBT Therapists Manual Page 50 -

"Current situation (housing, living with, work, benefits, interests)

This section will draw together a lot of what you may already know. It may help you determine areas that will need to be addressed in your sessions. For example, it may draw your attention to problem areas such as inadequate housing, financial difficulties
due to not working that may be factors that are contributing to the maintenance of their CFS/ME. Although you will have asked about employment and benefits, it would be
useful to find out, if they are not working, whether they want to return to their previous
job.

There is some evidence to suggest that being on benefits and/or income protection
(IP) are poor prognostic factors as they are contingent upon the patient remaining
unwell. Knowing about their current interests/hobbies may be helpful when you come to
discuss targets for treatment."


CBT Therapists Manual Page 97 -

"Discuss potential blocks to recovery

Participants may be following their agreed programme diligently, but may be experiencing difficulties in making progress, If this is the case, it is useful to identify and discuss possible reasons. There may be some very obvious reasons for their lack of progress, e.g. a total lack of support from a partner, ongoing stressful situations or having another illness on top of their CFS/ME.

Sometimes the reasons are less obvious. For example, if a participant is in receipt of benefits, or income protection (lP), this may inadvertently lead them not to push themselves too hard. This may result from a feeling of having to prove that they are "still ill" in order to keep their benefits."


CBT Therapists Manual Page 99 -

"Being in receipt of benefits or income protection (IP)

If this is something that has not already been addressed, it is important to address it at this stage. People with CFS/ME are sometimes very keen to come off benefits and it does not cause them too many problems, maybe because they have another source of income. However, it can raise a lot of issues for other people and can be a source of great anxiety.

Evidence from research trials has indicated that patients who are in receipt of benefits
or permanent health insurance do less well than those who are not in receipt of them.

In reality, benefits and IP can help patients financially in the shortterm, but prove to be
an obstacle to getting better in the long term. In order for benefits or IP to continue,
patients have to have regular check-ups in order to prove that they are still ill. This can
understandably be very distressing for patients and be an active factor in maintaining
their condition. For some patients, returning to work can be very frightening as it may
have been a major contributing factor to them becoming ill in the first place. Obviously
for some patients, work is not an option due to the severity of their symptoms.

For more information on work related issues, please see Appendix 20. There is also a
section in the participants' manual on work, courses and resources that you may ask
them to read"


CBT Therapists Manual Page 100 -

"Benefits

Participants may feel trapped by their benefits, i.e. some benefits will stop being paid if
they earn more than 20.00 a week. Participants may find the prospect of stopping
benefits and working the number of hours required to earn more than their benefits
would pay quite daunting. They can also be very fearful that if they come off benefits
and have a relapse, they will not be able to receive benefits again. It is therefore useful
to spend time discussing their fears and discuss different options. If they are keen to
come off their benefits, it is useful to discuss steps to be taken to increase their ability
to work, e.g. by doing some voluntary work, or permitted work'.

IP

For participants who are in receipt of IP, it can be worth discussing the advantages and
disadvantages of being on it. For participants who feel clear that they do not wish to
return to that job, it may be useful for them to discuss the possibility of resettlement
options with their employer. For participants who wish to return to their previous job, but
feel unable to work the hours that they used to do, you could suggest that they discuss
a graded return to work, or part-time work. For participants considering a return to work
it is helpful to suggest that they build up their stamina and confidence in their ability to
work again, e.g. by doing some voluntary work., For participants who want to leave their
job, it is worth discussing different options with them and getting them to look at
different alternatives for homework.

It is helpful for you to offer to write to employers, insurance companies, be
involved in meetings with their occupational health department or what ever is
necessary to help participant to meet their work-related goals."


CBT Therapists Manual Page 67 -

"Feeling that a physical cause has been missed and wanting further investigations

Some participants may not hold a specific belief about what is wrong with them, but feel
that despite many investigations, something has been missed. They may feel that they
want to continue having investigations or try a variety of treatments until they are cured.
Again, it is important to empathise with their situation, but to encourage them to hold off
having further investigations until after they have completed a course of CBT.

Participant

I am feeling so exhausted, I really cannot believe that all my tests are clean l feel sure
that something has been missed. I think I might go to my GP just one more time to ask
him if there are any other tests that I could have.

Therapist

I can understand that with feeling the way you do, you feel something has been missed. However what I am proposing to do is to help you to understand why you feel as bad as you do and also to see if we can help you to feel a bit better in the process.

Would that be o.k. ?

Participant

But what if something has been missed that could be easily rectified?

Therapist

From your notes I can see that you have had many tests, none of which point to a simple explanation for your fatigue. It therefore seems unlikely that someone would be able to detect an obvious cause of your problems. Although I can see the temptation of seeking further clarification of your problems, in reality what can happen is that you end up feeling more confused. I believe that your fatigue is a symptom of a bigger picture and I would like to spend some time discussing my thoughts on this matter with you. I wonder how you would feel about that?

Participant

Well, I suppose it wouldn't do any harm!

Therapist

What I suggest that we do is to get a large piece of paper and write down what we do know about your illness, including your symptoms, what was happening at the time you became ill and ways that you have been managing to deal with your illness to date. This information may help us to look at factors that may have triggered it and factors that may be involved in keeping it going. I hope this will help us to make some sense of your illness together before we move on to discussing ways of overcoming it. Would you give my suggestion a go?

Participant

Yes

Therapist

Great. Then maybe that would be a good place to start this session."



BACKGROUND/CONTEXT:

To put matters into context I suggest that you read the peer-reviewed paper entitled "Zombie Science a sinister consequence of evaluating scientific theories purely on the basis of enlightened self-interest", Professor Bruce Charlton, Medical Hypotheses (2008) 71 327-329, DOI: 10.1016/j.mehy.2008.05.018:
http://medicalhypotheses.blogspot.com/2008/07/zombie-science-dead-but-wont-lie-down.html

And do please also see the formal complaint made by Professor Malcolm Hooper, and associated documents, concerning PACE...

- "Magical Medicine: How to make a Disease Disappear" by Professor Malcolm Hooper:
www.meactionuk.org.uk/magical-medicine.htm
- "Ethical and Scientific Concerns about the MRC PACE Trial" by Professor Malcolm Hooper:
www.meactionuk.org.uk/MREC-complaint.htm
- "Update on Complaint to the MRC about the PACE Trial in the light of the confirmation of a strong association of a retrovirus with myalgic encephalomyelitis/chronic fatigue syndrome" by Margaret Williams:
http://www.meactionuk.org.uk/Update-on-MRC-complaint.htm
- "So near yet so far from Mission Accomplished?" by Margaret Williams:
http://www.meactionuk.org.uk/So-near-yet-so-far.htm
- "MRC PACE Trial Letter" by Professor Malcolm Hooper:
http://www.meactionuk.org.uk/PACE-Hooper-071010.htm
- "Another secret file on ME/CFS comes to light", 8 October 2010, by Margaret Williams:
http://www.meactionuk.org.uk/Further_Articles.htm
- "Knowledge or Belief?" by Margaret williams:
http://www.meactionuk.org.uk/Knowledge-or-Belief.htm


Regards,

Anglia ME Action.
contact@angliameaction.org.uk

http://tinyurl.com/3xj3uke
http://tinyurl.com/37h35ca

PLEASE REPOST THIS MESSAGE WIDELY.



ENDNOTES:


[1] XMRV- The UK PACE TRIAL File #1
http://tinyurl.com/3xj3uke

File seeder's comment:

"The poor quality of much medical research is widely acknowledged, yet disturbingly the leaders of the medical profession seem only minimally concerned about the problem and make no apparent efforts to find a solution.


"As the system encourages poor research it is the system that should be changed. We need less research, better research, and research done for the right reasons. Abandoning using the number of publications as a measure of ability would be a start".

Douglas G. Altman
The Scandal of Poor Medical Research
British Medical Journal
January 1994
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~



[2] XMRV- UK PACE TRIAL File #2
http://tinyurl.com/37h35ca

File seeder's comment:

http://www.hhs.gov/advcomcfs/meetings/minutes/cfsac052709min.html

William Reeves (CDC):

"The collaboration with Peter White is largely because Peter White came to us when the national health service in the UK was trying to design its program and formulate recommendations about what the health service in the UK should do. We've consulted with them as far as our ideas and our expertise, and we collaborate with Dr. White on the PACE trial. He's an unusually intelligent individual-you've read some of his comments on some of our articles-whom we enjoy sparring with. He is an expert on autonomic nervous system function and he's highly instrumental in all of the hurdles, both with patients with the government and with physicians, in trying to put together, given the current state of knowledge, a national program".

(see Welsh Government Disclosure 2296)
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

"The poor quality of much medical research is widely acknowledged, yet disturbingly the leaders of the medical profession seem only minimally concerned about the problem and make no apparent efforts to find a solution.


"As the system encourages poor research it is the system that should be changed. We need less research, better research, and research done for the right reasons. Abandoning using the number of publications as a measure of ability would be a start".

Douglas G. Altman
The Scandal of Poor Medical Research
British Medical Journal
January 1994
~~~~~~~~~~~~~~~~~~~~~~~~
************************************
MESSAGE ENDS - PLEASE REPOST WIDELY.

 

[Enid]

Somewhere over the Rainbow this lot - in "Cloud Cuckoo Land" - obviously not studying ME.

 

[Enid]

Though this is on the Web, I know we have a major problem here in the UK with Psyches who cling on like gnats - if any role minimal like any compassionate GP who does not understand yet but the humilty to learn.

 

[Sasha]

This is just vile. Absolutely vile. It makes me so angry.

What cheers me up, though, is that tomorrow is the first birthday of the XMRV/CFS paper being published in Science. The huge change in how CFS is being seen was unthinkable a year ago. I think this CBT/GET stuff is going to look pretty damn stupid as more biomedical research comes out over the course of the next year. I think the UK medical establishment is in for a big shock.

We really must do what we can to help ourselves - we must donate to proper biomedical research and do everything we can to make our voices heard.

 

[Wildcat]

From the ‘CFS’ PACE Trial Principal Investigator (Researcher) Professor Michael Sharpe’s contribution to Health Insurer Unum’s Chief Medical Officer’s Report Report 2002 :

http://www.unumprovident.co.uk/Home/AccessiblePDF/CMOReport2002.htm#3

'It is becoming increasingly clear that the problem of patients who have illness that is defined only subjectively and not clearly explained by disease is a large one. There is a great deal of confusion about what to call such illness. A wide range of general terms has been used including “hysteria”, “abnormal illness behaviour”, “somatisation”, and “somatoform disorders”. Recently the terms “medically unexplained symptoms (MUS)” and “functional” symptoms have become popular amongst researchers, as they do not assume any particular aetiology.

Obstacles to Recovery

“In practice, even if treatment is available, there may be obstacles to recovery. Over time, the patient’s beliefs may be become entrenched and be driven by anger and the need to explain continuing disability. The current system of state benefits, insurance payments and litigation remain potentially major obstacles to effective rehabilitation. It is often unrealistic to expect medical treatment alone to overcome these. Furthermore patient groups who champion the interest of individuals with functional complaints (particularly for chronic fatigue and fibromyalgia) are increasingly influential….. Again the ME lobby is the best example”.


~~~~~~~~~~~~~~~



Professor Jonathan Rutherford looks at the connections between government and the insurance business in their joint project to reduce eligibility for sickness benefits.


'New Labour, the market state, and the end of welfare'
http://www.lwbooks.co.uk/journals/articles/rutherford07.html

‘In November 2001 a conference assembled at Woodstock, near Oxford. Its subject was 'Malingering and Illness Deception'. The topic was a familiar one to the insurance industry, but it was now becoming a major political issue as New Labour committed itself to reducing the 2.6 million who were claiming Incapacity Benefit (IB). Amongst the 39 participants was Malcolm Wicks, then Parliamentary Under Secretary of State for Work, and Mansel Aylward, his Chief Medical Officer at the Department of Work and Pensions (DWP)…...’

‘It was actually [health insurer] Provident that was quickest off the mark, introducing an aggressive system of 'claims management' that would become the industry norm. It could not influence interest rates, but it could reduce the number of successful claims it paid out. Its Independent Medical Examination (IME) was skewed in favour of the company through the work undertaken by its claims adjusters and in-house doctors.

Illnesses were characterised as 'self-reported' and so thrown into question. Only 'objective' test results were accepted. Some disabling conditions were labelled as 'psychological', which made them ineligible for insurance cover beyond 24 months. Doctors were pressured to use the 'subjective nature' of 'mental' and 'nervous' claims to the company's advantage.

Specific illnesses were targeted in order to discredit the legitimacy of claims.

The industry drew on the work of two of the Woodstock conference participants, Professor Simon Wessely of King's College and Professor Michael Sharpe of Edinburgh University, in an attempt to reclassify ME/CFS as a psychiatric disorder. Success would allow payouts to be restricted to the 24 month limit for psychological claims and save millions of dollars.

By 1997 Provident had restructured its organisation to focus on disability income insurance as its main business. It acquired Paul Revere, and then in 1999 merged with Unum under the name Unum Provident’.


'..Two factors threatened future profits however. The first was falling interest rates, and the second was the growth in new kinds of 'subjective illnesses', for which diagnostic tests were disputable. The old industrial injuries were giving way to illnesses with no clear biological markers - Myalgic Encephalomyelitis (ME) or Chronic Fatigue Syndrome (CFS), Fibromyalgia, Chronic Pain, Multiple Sclerosis, Lyme Disease. In the early 1990s the new kinds of claims began to rise just as interest rates fell: profits were threatened. Unum's 1995 'Chronic Fatigue Syndrome Management Plan' sounded the alarm: 'Unum stands to lose millions if we do not move quickly to address this increasing problem'....



~~~~~~~~~~~~~~~~



We know that ‘CFS’ has been systematically been made an umbrella term with vague fatigue-based diagnostic criteria only, and the hallmark signs and symptoms of Myalgic Encephalomyelitis (neurological, neuro cognitive, immune, etc), have been disappeared from the ‘CFS’ diagnostic criteria.

ME has effectively been ‘disappeared’ as a disease. There is a mountain of high quality primary source evidence that diverse vested interests are at work. and have been for over 20 years.

The labels invented and that are exploited to disappear ME (and also ‘disappear’ Fibromyalgia, Multiple Chemical Sensitivities and Gulf War Syndrome) and make out that ‘CFS’ is psychosomatic, include:

‘Medically Unexplained Symptoms’ or MUS;

‘Functional Somatic Syndromes’;

‘Abnormal Illness Behaviour’ (or just ‘illness behaviour’);

‘False Illness beliefs’ (or just ‘illness beliefs’);

‘Unexplained Health Complaints’;

‘Hysteria’;

the 19th Century term ‘Neurasthenia’;

Subjective Illness’;

'Illness perceptions'.....



“Functional” is very clever term because in common language it means whether something works or not, but in psychiatry ‘Functional’ is a euphemism for Psychosomatic.


Wildcat

 

[Sasha]

Aargh, there goes my blood pressure...

 

[Wildcat]

Sorry bout your blood pressure Sasha - makes me hopping too - just a bit of relevent history -

like your reminder that this time last year we didn't know how much our world would be changed by those little letters XMRV

 

[Sasha]

Thanks, Wildcat! Actually I have low BP so it has probably done me a favour, but still!

Roll on, the XMRV juggernaut!

 

[Snow Leopard]

Evidence from research trials has indicated that patients who are in receipt of benefits or permanent health insurance do less well than those who are not in receipt of them

So those who have a more severe condition are more likely to apply for benefits. Does this surprise anyone? (No)

"The more severely disabled group of CFS/ME patients were excluded from previous studies as the studies involved an exercise test that may have been too challenging.

However due to greater levels of inactivity in the more severely disabled group, the deconditioning model should apply equally if not more to these patients."

Translation: GET for severe patients is NOT evidence based.

 

[Sean]

So those who have a more severe condition are more likely to apply for benefits.

Exactly. Why they do not give proper consideration to that very serious possibility? I think we know the answer to that.

•••••

This document is an outstanding example of what happens when you mix scientific misconduct (and that is the nicest way I can describe it), callous ideological obsession, career opportunism, empire building, pure propaganda, moralism, corporate greed, and state sanctioned thuggery.

 

[Bob]

Does anyone know when they are going to publish the PACE trials results?

 

[Bob]

Under the 'CBT' section of the manual...

Essence
The essence of CBT is helping the participant to change their interpretation of symptoms and associated fear, symptom focusing and avoidance.

Aim
The aim of this treatment is to change the behavioural and cognitive factors, which are assumed [i.e. there's no evidence for this!] to be partially responsible for perpetuating the participant's symptoms and disability...

Theoretical Model
The model emphasises the importance of the participants understanding of their illness and their interpretation of symptoms. For example they may interpret symptoms as a warning sign to reduce activity [er, der, yes! obviously!]. Fear of symptoms and consequent avoidance of activity is central.

It's interesting that they say we have a fear of symptoms and a consequent avoidance of activity...
I think that description pretty much fits in with my illness...

But where they get it so fundamentally wrong is that my "avoidance of activity" is not based on some sort of pathological activity-avoidant personality disorder, but it is essential for avoiding aggravating my symptoms and, in the long-term, hopefully a better quality of life... It's part of my symptom management plan.

 

[fred]

I presume these are the manuals that were used in the trial. If so, how were they acquired for the public domain? Was it via a Freedom of Information request?

Also, is there any way of downloading these files other than via Torrent as it is causing problems for many of us.

 

[Bob]

I presume these are the manuals that were used in the trial. If so, how were they acquired for the public domain? Was it via a Freedom of Information request?

Also, is there any way of downloading these files other than via Torrent as it is causing problems for many of us.

My extracts are taken from: "PACE - manual for therapists - Cognitive Behavioural Therapy for CFS/ME" by Mary Burgess and Trudy Chandler. It looks like it's one of the manuals created for the therapists on the PACE trial.
But I don't know the answers to any of your other questions fred.

 

[garcia]

Edited Message
http://www.divshare.com/download/12948806-e8c

 

[pictureofhealth]

I think what I find most odd about the GET advice in the PACE manual is that at the time of getting ill I was already active, as I am sure most of us were.

I was living in London and had to walk a mile a day to get to, and from, the nearest tube and trains stations to get to work, and at work we had long corridors between offices and the canteen.

At weekends, I would meet friends and walk around Camden market, shops in town, or walk on Hampstead Health, or go camping in the countryside and go swimming. However I was not doing 'vigorous exercise' ie over training, in fact I got chest pain if I used any exercise equipment or tried vigorous exercise, so I simply didn't - but I walked everywhere.

It was when I began to get exhausted just walking and doing gentle swimming and other normal activities, and started to feel ill, depressed & inflammed afterwards, that I consulted a doctor. If I tried dancing, my brain would feel as if it had 'caught fire' and I would get dreadful headaches.

To be honest I thought I was developing Parkinson's or some other neurological condition as I was shaking, trembling (especially on the R side for some reason) and having trouble coordinating my movements which seemed to have 'slowed up' - even simply taking clothes out of the cupboard became frustrating. My leg and arm on the R side would sometimes simply bounce up and down - like a palsy.

My landlady had to drive me to the GP - it was embarassing.

This illness is about inflammation in the nervous system IMO - and exercise MAKES IT WORSE!!!

 

[Snow Leopard]

It's part of my symptom management plan.

It's called pacing. Which curiously has little to do with this CBT trial.

Kinesiophobia in CFS has been debunked by Njis et al. and Gallagher (and White) et al.

 

[Snow Leopard]

I think what I find most odd about the GET advice in the PACE manual is that at the time of getting ill I was already active, as I am sure most of us were.

And then after just a few weeks of a virus or other infection, you magically developed these maladaptive cognitions behaviors which caused you prolonged severe disability. It does sound a bit ridiculous when you put it into a straightforward description like this.

I rember the major physical attribute I had that set me apart from my peers (I was otherwise mostly average), was physical endurance. When I was a teenager, I dreamed of 100-200km+ rides, or at least running marathons and the occasional ultra marathon like my father. Of course I don't think this was due to any genetic physical prowess, but rather mental stamina. Such mental stamina I don't believe I have lost after contracting CFS.

Of course they try to have it both ways by attempting to place someone like me into the 'push-crash' basket, even though I don't fall into a regular push-crash cycle. I don't consider someone who adopts a regular activity level but occasionally pushes the boundaries to have maladaptive behaviour. Ironically, the boundaries of a CFS patient are a lot lower than activity matched sedentary individuals, but not many accuse them of maladaptive behaviour for their low activity levels.

 

[Bob]

From the manual...

What factors contribute to the development of CFS/ME?

There is a growing body of evidence that is suggesting that a number of factors may be involved in triggering the illness.

Personality

People with CFS/ME often report being hardworking, conscientious and having high expectations of themselves. This type of personality may lead ot individuals striving very hard to achieve in all they do, leaving little time for pleasure.

So 'personality' is a contributing factor for the development of CFS/ME?

I expect that a lot of ME patients try to explain and illustrate their illness by saying that they used to be hard working and conscientious before they became ill... and that they now can't do anything...

But I think that most people in the world are hard working and conscientious... After all, most people have got to work for a living, run their lives, make a home and bring up children... You can't do all these things by being a lazy lay-about... So I don't think that being hard working and conscientious is unique to ME patients!

And so they twist what we say to make it look like it is our personality-type causing us to have the illness. It really is exceptionally pathetic and lazy 'science'.

I shouldn't waste my time and energy on it really... I knew it was all going to be a load of nonsense! But it's quite interesting to see how the psychiatrists think!

 

[Dolphin]

So 'personality' is a contributing factor for the development of CFS/ME?

I expect that a lot of ME patients try to explain and illustrate their illness by saying that they used to be hard working and conscientious before they became ill... and that they now can't do anything...

But I think that most people in the world are hard working and conscientious... After all, most people have got to work for a living, run their lives, make a home and bring up children... You can't do all these things by being a lazy lay-about... So I don't think that being hard working and conscientious is unique to ME patients!

Yes, I remember a TV programme did a little study which was supposed to test the validity of horoscopes. A group was given descriptions of themselves supposedly based on their star sign and asked to rate if they thought it fitted them. 85% gave it a very high rating. It turned out that everyone had got the exact same description.

My point is that one can make generic statements that most people seeing as fitting themselves e.g. most people see themselves as hard-working.