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UK Dept of Work & Pensions site hype efficacy of GET & CBT based on their PACE Trial

Dolphin

Senior Member
Messages
17,567
(Apologies if this page was discussed before)

My attention was recently drawn to the following page:
http://www.dwp.gov.uk/publications/...onditions/chronic-fatigue-syndrome/treatment/

It was updated in April 2011. It uses the language of the PACE Trial to make claims.

I'm a bit busy at the moment to write too much but I'm sure others can analyse it more.

The interesting thing of course is that they were one of the funders of the PACE Trial. And the definition of "normal" (among other things) was changed in the published paper compared to the protocol. Could their preferences have influenced the authors? Could the authors have known what their preferences might be? Of course, the preferences of insurance companies might be similar.
 

justinreilly

Senior Member
Messages
2,498
Location
NYC (& RI)
This is hardcore Wessely-type stuff. I hope people will complain to them.

Management

Several different approaches have been used to manage this condition. There is no cure and treatment is aimed at managing the effects of the illness to improve both physical and mental function. No single approach is effective in all cases.

Management starts with the diagnosis and an explanation of why a patient is still ill. An explanation that CFS/ME may be progressive in some patients but is not life threatening is an important initial step. No specific drug treatments are available. A collaborative and concordant approach to managing the condition is used where doctor and patient discuss the different options with a view to reducing symptoms and disability. The aim of management is to enable the person to improve their quality of life by returning in a gradual way to usual daily activities, education or work. It is helpful to address both the physical and mental effects of the illness, and to minimise the results of over exertion or prolonged inactivity, and revise a boom and bust pattern of activity. A variety of forms of management as described below may be tried, either individually or in combination. All involve establishing a sustainable baseline of activity as the first step.

Graded exercise therapy and graded activity therapy

Supervised and gradually increasing physical and cognitive activity will enable the majority of people to improve, and some to return to a normal level of functioning. This is likely to be undertaken with the help of an appropriately trained physiotherapist (using graded exercise therapy) or an occupational therapist (using life style management) often within a hospital or clinic setting. Caution is required since over-activity, or increasing at too fast a rate, may lead to relapses. Unsupervised or inappropriately supervised therapy can sometimes also cause relapses. Research suggests that this approach is helpful in the majority of adult ambulant patients.

Cognitive behavioural therapy

Cognitive behaviour therapy (CBT) is used in CFS/ME to help people to examine their interpretation of symptoms such as fatigue or muscle pain, which they may perceive as damaging to their bodies, and as a result avoid activities that appear to precipitate them. People are encouraged to view such symptoms as reversible physical and psychological processes rather than evidence of a fixed or progressive disease process, by trying out a mutually agreed programme of graded activities, which help to challenge these beliefs. Understanding the illness, addressing fears and where appropriate reinterpreting the disabling symptoms allows the person to make a gradual improvement in their level of functioning and well-being. Sleep is improved and mutually agreed graded increases in activity become possible over some weeks or months. Research suggests that this approach is helpful in the majority of adult and adolescent outpatients.

Pacing (Adaptive Pacing Therapy APT)

Pacing is a lifestyle management approach in which the person with CFS/ME is encouraged to live within the limits of their illness and energy levels carefully balancing their activity and rest, as well as balancing different activities. When possible, activity is increased gradually, but readjusted in the event of symptom exacerbation. A recent study (PACE study), however, showed that both Cognitive behaviour therapy (CBT) and Graded exercise therapy (GET) were more effective than APT, that APT was no more effective than specialist medical care alone and recommended that patients attending secondary care with CFS should be offered individual CBT or GET alongside specialist medical care.

Emphasis added
 
Messages
13,774
Some of the other pages:

Prognosis and Duration of disabling effects

People with mild illness may recover spontaneously, or with some general advice or a limited treatment programme over the course of the following six months. These people are likely to be treated in a general practice setting.

People with established CFS/ME of moderate severity lasting one to two years or more are likely to need a more extensive management programme, as described above, lasting 6 to 12 months or more. Most people who are able to attend hospital for treatment are likely to make a significant improvement with appropriate management. Some people will recover fully, but others will not achieve their previous level of functioning. Some may not improve. Those who recover may be at risk of recurrence. Those who improve are at risk of relapse. In many patients, disability and quality of life can be improved, sometimes to a significant extent.

Severe cases are less likely to recover completely or benefit substantially from a management programme.
Indicators of a good prognosis are:

Male sex,
A definite history of an acute viral illness like glandular fever at the onset,
Mild disability and few symptoms,
Clinical features showing a pattern of evolution towards functional recovery,
Early diagnosis aimed at eliminating associated physical disorders and/or identifying psychiatric illness along with other complicating psychological or social factors,
A management approach which may encompass physical, psychological and social elements that allows a stepwise approach to functional improvement using rehabilitation.

Indicators of a poor prognosis are:

Onset of symptoms without any clear precipitating factor,
Clinical features characterised by severe and unremitting symptoms,
Severe and persistent disability,
A management approach that overemphasises the importance of either complete rest or which advocates a rapid return to pre-illness levels of physical activity,
Those with co-morbid significant medical conditions or mood disorders,
A complex background of adverse psychological and social factors.

Care and mobility considerations

The disabling effects of CFS/ME in individuals is variable. The following describes the typical problems with daily living activities for the majority of the time.
Mild Functional Restriction
Category Description

Mobility


The ability to walk long distances may be reduced, but the person is likely to be able to walk short distances on an unrestricted basis most of the time.

Their judgment, thought processes and means of communicating are not affected to the extent that they would be unable to find their way around in familiar and unfamiliar places.

Care


The person would normally to be able to wash, dress, bathe, use the toilet, get up and downstairs without difficulty. The ability to plan a meal is not impaired and the tasks involving in preparing and cooking food are unlikely to be restricted in any way.
Moderate Functional Restriction
Category Description

Mobility


The ability to walk more than 100 metres consistently may be restricted in moderate cases, but severe restriction of walking is unlikely.

Their judgment, thought processes and means of communicating are not affected to the extent that they would be unable to find their way around in familiar and unfamiliar places.

Care


Those with a moderate level of functional restriction would be expected to be able to manage some personal care and preparation of food without help from another person most of the time. Tasks may take longer than normal and may need to be followed by a period of rest. Although the level of fatigue and symptom severity may vary during the day or from day to day, the ability to maintain personal hygiene and nutrition is likely to be unimpaired.
Severe Functional Restriction
Category Description

Mobility


Such claimants may be severely restricted in their ability to walk. There may a requirement for supervision either at home or out of doors as a result of significant cognitive impairment, but it would be uncommon.

Care


People with a severe level of functional restriction, who spend most of the day in bed or otherwise immobile, and who may have clinically evident muscle wasting, may well need help with personal care and preparing food.

Clinical features

The main symptoms are persistent mental and physical fatigue, tiredness or exhaustion that are characteristically made worse by activity. People often do not sleep well and find that sleep fails to refresh them. Often they feel symptoms more after physical or mental activity, even minor exertion within the home environment, and this effect is characteristically delayed until the next day or so, and is prolonged. Muscles and joints ache and are painful. Headaches, sore throat and tender lymph glands in the neck and armpits are described. People with the condition also report short-term memory loss and poor concentration. Their mood may fluctuate and they may be prone to feelings of anxiety. Hypersensitivity to everyday levels of noise and light are reported.

People with CFS/ME often describe variation in the level of symptoms and disability. Symptoms of fatigue and pain may vary in their severity during the course of the day, or may be considerably worse for several days after undertaking unaccustomed levels of physical or mental activities, even if these involve relatively simple tasks. Patients may be able to undertake a task for a short period of time, but then be unable to sustain or repeat it.

Those whose symptoms are mild may continue to undertake a range of normal daily activities. Some people will be able to carry out their occupation but have to reduce their social activities. Those with more severe forms of the condition are unlikely to be able to continue at work or in education. Daily living activities, hobbies, interests and social interaction are also likely to be considerably reduced. In the most severe cases the individual may spend almost all of the day resting, or be bed-ridden. Some people may use a wheelchair outside to minimise the fatigue and symptoms such as joint/muscle pain, or problems with dizziness/balance, engendered by walking.

Between, a quarter and a half of people with CFS/ME are in part-time or full time employment or education. When compared to people with other diseases like diabetes mellitus or arthritis seen in hospital clinics many people with CFS/ME are on average more disabled.

Physical examination is normal in most cases. Some people may have postural hypotension. (Normally blood pressure is lower when sitting or lying in bed, on standing up it rises. In some people, in particular the elderly, there is a lag phase - a time interval - during which the pressure rises to the higher level. This may be experienced as a sensation of dizziness or light-headedness, and sometimes in the elderly leads to falls). Those who are the most chronically and severely disabled may have some observable generalised muscle wasting, most likely to be found in the lower limbs, although this is unusual.

Click on the link for details of:

Is CFS/ME a physical illness?
 
Messages
15,786
It's interesting how they acknowledge most of the physical symptoms, but sneak in words and phrases to imply that it's the result of muscle wasting, psychological problems, other diseases, girliness, etc.

The "management" and other sections posted by Esther sound particularly schizophrenic. As if they wanted to make sure that the literature applies to real ME/CFS, but then rewrote it to include a psychological spin that doesn't fit very well.
 

SilverbladeTE

Senior Member
Messages
3,043
Location
Somewhere near Glasgow, Scotland
200px-Arbeit_Macht_Frei_Dachau_8235.jpg


"Department of Dismantling the Welfare State so Rich Scum Can Pay Less Tax To Keep The Excess Population Alive"
that's what it's REALLY all about.
Also important to udnerstand how that phrase came about, got used, eventually became a slogan for monstrous evil, and how the an initial good idea (large scale public works to give jobs during the Depression) ended up getting perverted step by step into slave labour to both exterminate the "untermensch" but also, to make vast fortunes for Big Business (most people are unaware of the fact the Third Reich was really put in power, supported and exploited by social Elite and Big Business, historical fact)

History tends to repeat itself, scumbags learn the lessons and use the ideas of previous scumbags.
And, things can "go down the rabbit hole" incredibly quickly which is why civil rights and prevention of abuse are so crucial, the abuse of today's "societal scapegoat" eventually becomes the de rigeur process by how the System works

please see the horrendous way the UK tabloids and some politicians have attacked the disabled and welfare system for several years now, blaming all ills on us, ha! when the country is in a mess because they let their Big Business friends get away with avoiding brobdignagian sums of tax revenue the country desperately needed
loved recent scandal when several senior figures in government and tax inspectorate were caught out, having expensive dinners etc with the big mobile phone and banks invovled in the recent financial mayhem and then thsoe same businesses got let off with tax...

http://www.bbc.co.uk/news/business-15630606
HMRC top lawyer forced to swear oath in ParliamentMPs said they were making him swear the oath because they had "not been able to get answers otherwise"
MPs questioning the top lawyer at HM Revenue and Customs have taken the unusual step of making him swear an oath to tell the truth.

Members of the Commons Public Accounts Committee felt they had been unable to get answers from Anthony Inglese.

The session was part of an inquiry into tax deals negotiated by HMRC with Vodafone and Goldman Sachs.

Mr Inglese and HMRC Permanent Secretary David Hartnett admitted that mistakes had been made in the deal.

Last year, Vodafone agreed to pay 1.25bn in tax arrears, but was apparently not asked to pay interest.

The deal was uncovered by the Guardian newspaper and Private Eye, leading to protests outside Vodafone offices.

Goldman Sachs negotiated a deal with HMRC, which the committee said had saved the investment bank between 8m and 10m.

Committee chair Margaret Hodge questioned why HMRC appeared to have a special relationship with such big businesses that allowed them to do deals in a way that would not be possible for smaller businesses or individual taxpayers.

Lost bonus

Mr Hartnett had told an earlier hearing that he had been advised by an HMRC official that there was a "legal impediment" to charging interest.

He revealed on Monday that an official from HMRC had lost his bonus as a result of the deals.

"The error was taken into account on someone's annual appraisal," he said.

The committee asked if that meant the individual lost their bonus and he replied, "I think that is another way of putting it."

The committee made Mr Inglese swear an oath after he continually declined to answer questions on the grounds of taxpayer confidentiality.

The committee suggested that taxpayer confidentiality should be overruled by parliamentary privilege.

Parliamentary staff said that nobody had been asked to swear an oath by a parliamentary committee for more than a decade.

Appearing alongside Mr Hartnett was the most senior civil servant, Sir Gus O'Donnell, who announced the appointment of two new tax commissioners.
 

*GG*

senior member
Messages
6,389
Location
Concord, NH
"A recent study (PACE study), however, showed that both Cognitive behaviour therapy (CBT) and Graded exercise therapy (GET) were more effective than APT, that APT was no more effective than specialist medical care alone and recommended that patients attending secondary care with CFS should be offered individual CBT or GET alongside specialist medical care. "

What does this say about our/thier medical care? No more effective than CBT and GET.

gg
 

Dolphin

Senior Member
Messages
17,567
"A recent study (PACE study), however, showed that both Cognitive behaviour therapy (CBT) and Graded exercise therapy (GET) were more effective than APT, that APT was no more effective than specialist medical care alone and recommended that patients attending secondary care with CFS should be offered individual CBT or GET alongside specialist medical care. "

What does this say about our/thier medical care? No more effective than CBT and GET.

gg
Medical care in this case wasn't very "medical" - not something somebody in the US would travel long distances for (say). Also in case it's not clear, the comparison was CBT+SMC or GET+SMC vs APT+SMC vs SMC-alone.
 

Wonko

Senior Member
Messages
1,467
Location
The other side.
"specialist medical care" for ME in the UK is CBT/GET - by defintition as NICE do not allow any other form of "treatment" and doctors who step out of line are hauled up before the GMC.

So, "specialist medical care" on it's own i.e.(CBT/GET), is less effective than CBT/GET in combination with "specialist medical care" i.e. CBT/GET?

Am I just having a bad brain day or is this meaninless doublespeak posing as utter drivel?
 

Dolphin

Senior Member
Messages
17,567
"specialist medical care" for ME in the UK is CBT/GET - by defintition as NICE do not allow any other form of "treatment" and doctors who step out of line are hauled up before the GMC.

So, "specialist medical care" on it's own i.e.(CBT/GET), is less effective than CBT/GET in combination with "specialist medical care" i.e. CBT/GET?

Am I just having a bad brain day or is this meaninless doublespeak posing as utter drivel?
Specialist Medical Care meant you got a few appointments with a doctor.
 

SilverbladeTE

Senior Member
Messages
3,043
Location
Somewhere near Glasgow, Scotland
"specialist medical care" for ME in the UK is CBT/GET - by defintition as NICE do not allow any other form of "treatment" and doctors who step out of line are hauled up before the GMC.

So, "specialist medical care" on it's own i.e.(CBT/GET), is less effective than CBT/GET in combination with "specialist medical care" i.e. CBT/GET?

Am I just having a bad brain day or is this meaninless doublespeak posing as utter drivel?

Kafka!
The banality and sheer bloody-minded, unswerving stupidity of evil should never be underestimated
Facts and compassion are inconveniences, after all! (to them) ;)
 
Messages
13,774
Kafka!
The banality and sheer bloody-minded, unswerving stupidity of evil should never be underestimated
Facts and compassion are inconveniences, after all! (to them) ;)

SMC wasn't really CBT/GET. It wasn't like anything I've ever been offered on the NHS either.
 

Enid

Senior Member
Messages
3,309
Location
UK
UK Dept of W and Pensions must be the last and least informed about science and current research findings. My own assessment came only because of those individuals who came and witnessed the severity of the physical and cognitive - ah and no not you Mr Wessely.
 

Sean

Senior Member
Messages
7,378
Yes, indeed in the protocol it was called "standardised specialist medical care (SSMC)".
And which, if I recall rightly, was thereafter almost exclusively referred to by the authors as "Specialist Medical Care (SMC)".

Which is a little on the generous side.
 

Enid

Senior Member
Messages
3,309
Location
UK
Specialist medical care is more than generous in the UK - where is it ?
 

Dolphin

Senior Member
Messages
17,567
Dolphin said:
Yes, indeed in the protocol it was called "standardised specialist medical care (SSMC)".
And which, if I recall rightly, was thereafter almost exclusively referred to by the authors as "Specialist Medical Care (SMC)".

Which is a little on the generous side.
(Not sure this is important) The acronym SSMC was in 60 places in the protocol although like you say the "specialist medical care" was commonly used.
More importantly, standardised was completely dropped from the main (non-protocol) paper which is all 99% of normal professionals will read. In the PACE Trial Identifier, it was called "usual medical care".
 

Sean

Senior Member
Messages
7,378
Specialist medical care is more than generous in the UK - where is it ?
I meant that the authors calling it 'specialist' is them being a little generous to themselves with the truth, and trying to make a silk purse out of a sow's ear.

Certainly not suggesting that genuine specialist medical care for ME patients is generous in the UK, or anywhere else.

More importantly, standardised was completely dropped from the main (non-protocol) paper which is all 99% of normal professionals will read.
Exactly. Could even be described as a deliberately misleading omission.