“ME can
cause profound, long-term illness and disability, and much of the distress
surrounding it is caused by difficulties in recognising, acknowledging and
accepting the condition and its impact. This has been compounded further by a
lack of effective treatments, wide variation in access to services, and by
controversy over the use of graded exercise therapy and cbt that has served
only to alienate many people with ME and in some cases undermine the confidence
of those caring for them.”
What Must Be
Avoided if You Have Myalgic Encephalomyelitis - Information for all who treat
or manage people with ME including children and adolescents
Graded
Exercise Therapy (GET) and Cognitive Behavioural Therapy (CBT) are unsuitable
treatments for people with ME. These treatments have been proven to be both
ineffectual & harmful to people with ME, including children with ME.
The NICE ME
Guideline 2021 represents a major reversal in advice for clinicians. “The
committee concluded any programme using fixed incremental increases in physical
activity or exercise (for example, graded exercise therapy), or physical
activity or exercise programmes that are based on deconditioning and exercise
avoidance theories, should not be offered to people with ME. The committee also
wanted to reinforce that there is no therapy based on physical activity or exercise
that is effective as a cure for ME.”
The NICE
Guideline 2021 states:
1.11.14 Do
not offer people with ME/CFS:
· any therapy based on physical
activity or exercise as a cure for ME/CFS
· generalised physical activity or
exercise programmes – this includes programmes developed for healthy people or
people with other illnesses
· any programme that does not follow
the approach in recommendation 1.11.13 or that uses fixed incremental increases
in physical activity or exercise, for example, graded exercise therapy (see box
4)
· physical activity or exercise
programmes that are based on deconditioning and exercise avoidance theories as
perpetuating ME/CFS.
https://www.nice.org.uk/guidance/ng206
Here is what
you can use to show healthcare providers who do not realise the harms caused by
GET on people with ME, i.e., those who try to push GET on you or a patient in
your care: -
.
.
(1) Workwell
Foundation’s letter re GET for Healthcare providers which can be emailed, or a
printed copy handed to your medic/other to inform them of the inappropriateness
of GET as a therapy for ME: -
.
.
(2) Dialogues for ME's Educational Film re Graded Exercise Therapy (GET) can also be used to educate
medics and others re the dangers of GET as a treatment for ME.
(3) The
following filmsabout Post Exertional Malaise (PEM or PENE as per the ICC)
are useful for educational purposes and for providing information to ME-unaware
medics and others. PEM/PENE is the cardinal feature of Myalgic Encephalomyelitis
(ME) so it is very important that medics and others know about PEM/PENE to
understand why Graded Exercise Therapy (GET) is so harmful to people with ME.
What is
Graded Exercise Therapy (GET)?
The
principle of GET is for the patient to increase their exercise over time even
if they feel very unwell from doing so. The principle behind prescribing GET
for those with ME is an underlying belief that the ongoing symptoms are due to
false illness beliefs and deconditioning.
Before we
begin to discuss the inappropriateness of GET for ME here are two important
points about ME..
(1) ME is an
acquired complex neurological disorder affecting multiple systems of the body.
The body’s ability to generate and produce energy at a cellular level is
seriously impaired meaning systems and organs cannot function properly causing
progressive systemic deterioration. ME is a serious and debilitating
multi-system neuro-immune condition.
(2) Post
Exertional Neuroimmune Exhaustion (PENE), sometimes referred to as PEM is the
cardinal symptom of ME. According to the International Consensus Criteria
(2011) on ME. 'this cardinal feature is a pathological inability to produce
sufficient energy on demand with prominent symptoms primarily in the
neuroimmune regions.' Essentially any
action whether physical, cognitive, emotional, social etc drains available
energy and if the ability to replace this energy is impaired this can lead to a
worsening of all symptoms which can last for days, weeks or months – even
causing permanent, non-recoverable systemic damage. This is commonly called ‘a
crash’ or ‘a relapse’.
As such,
Graded Exercise Therapy (GET) is unsuitable for people with ME.
GET, as a
treatment, has been proven to seriously harm and even kill people with ME as
their bodies do not have the ability to reproduce energy and pushing their
bodies beyond safe limits can result in pushing them into a severe case of
their illness, often needing 24 hr care, bedbound, doubly incontinent, needing
feeding tubes and having multi organ problems and even death.
.
.
Cognitive
Behavioural Treatment (CBT) as a treatment for people with ME is not an
effective tool. While CBT may be useful as an adjunct therapy, as with many
chronic illnesses, it should not be recommended as a primary treatment.
By
convincing patients that they are not ill, it will likely cause harm. Patients
who over-exert themselves will suffer a deterioration in their illness. Patient
evidence suggests adverse outcomes when treated with CBT.
Many people
with ME cannot get out of their beds or houses and to set them up with
therapist appointments which they cannot possibly attend, or which inevitably
causes them severe crashes & relapses, amounts only to cruel and unusual
punishment. Travelling to and sitting through unhelpful CBT sessions can be
harmful to ME patients whose energy is in short supply and who already struggle
to manage minimum essential daily activities.
If patients
want to have psychological therapy to help them cope with their illness, then
that should be their choice & something that they request for themselves,
as is the case with any other illness.
.
.
More Educational Films
If you want
to know about the most serious health challenge facing people, one that still
has not been recognized, be sure to watch this film from Dialogues for ME which includes the
widespread and pernicious impact of a careerist psychiatric lobby
.
.
.
Further reading
if you want to know why (1) Graded Exercise Therapy (GET), or any exercise, is
not suitable for people with ME, and (2) If you want to know a little about why
GET and CBT became the inappropriate suggested treatments for MEif they are
inappropriate
(1) The
problem with Myalgic Encephalomyeltis (ME) is that it seems so ridiculous that
exercise could actually make patients worse. How can exercise be so bad for people
with ME but so good for almost every other serious illness?
· A study by Workwell’s Todd Davenport
et al shows that ME patients have metabolic defects that cannot be explained by
exercise phobias, deconditioning or 'illness beliefs'. People with ME have
reduced oxygen consumption during exercise tests.
· People with ME have an impaired
ability to increase their oxygen consumption during exercise. This is entirely
different to every other disease we know including cardiovascular disease, lung
disease, end-stage renal disease, hypertension & cystic fibrosis.
Paper here
· ME patients also show impaired oxygen
consumption and reduced anaerobic threshold compared to Multiple Sclerosis as per paper here
· Exercise testing provides an explanation for why ME patients can crash even after modest exertion. The
reduced aerobic capacity of people with ME results in a switch to anaerobic
metabolism that likely impacts their ability to do simple daily activities.
· People with ME can 'crash' if they
over-exert resulting in a post-exertional malaise (PEM) (Post Exertional
Neuroimmune Exhaustion (PENE) as per the ICC 2011). Triggering PEM/PENE reduces
the threshold at which anaerobic metabolism accelerates, which impairs the
ability of patients to do non-strenuous tasks as described in this paper
· Exercise that triggers PEM/PENE in ME
patients leads to a sustained immune inflammatory response that is distinct
from that in sedentary or deconditioned people.
Paper here
· People use aerobic metabolism for the
majority of daily activities such as walking and seated tasks. But a reduced
aerobic capacity of ME patients likely forces a switch to less efficient
anaerobic metabolism leading to premature fatigue and PEM /PENE.
Paper here
· Exercise studies show that the
increased reliance on anaerobic metabolism in ME patients results in increased
metabolites such as lactic acid which likely leads to an inability to maintain
work and a reduction in activity.
Paper here
· Physical therapists should be aware
that post-exertional malaise PEM/PENE in people with ME is due to objectively
measurable deficits in metabolism. So yes, exercise is beneficial for nearly
every illness.....but the science shows that ME is the exception.
Paper here
· This Frontiers review by the Workwell
Foundation discusses how cardiopulmonary exercise testing, CPET, can be used to
help diagnose & research ME.
(2) Where
did Graded Exercise Therapy come from and why is it still being recommended to
people with ME?
GET became
underpinned by the NHS after a large trial was conducted in the UK to establish
whether CBT and GET were effective treatments for ME.
The study
was known as the PACE trial. The authors were among a prominent group of
British mental health professionals, and their associates, who had long argued
that the devastating symptoms of ME were caused by false illness beliefs and
severe physical deconditioning.
They
recognized that many people experienced an acute viral infection or other
illness as an initial trigger. However, they believed that the syndrome was perpetuated
by patients’ “unhelpful” and “dysfunctional” notion in that they continued to
believe they suffered from an organic disease and that exertion would make them
worse. According to these psychiatry ‘experts’, patients ‘decisions’ to remain
sedentary for prolonged periods led to muscle atrophy and other negative
systemic physiological impacts, which then caused even more fatigue and other
symptoms in a self-perpetuating cycle.
Biological
studies however have shown that the illness is characterized by immunological
and neurological dysfunctions, and many academic and government scientists say
that the search for organic causes, diagnostic tests and drug interventions is
paramount.
In contrast,
the British mental health experts focused on non-pharmacological rehabilitative
therapies, aimed at improving patients’ physical capacities and altering their
perceptions of their condition through behavioural and psychological
approaches. The PACE trial was designed to be a definitive test of two such
treatments they had pioneered to help patients recover and get back to work.
British government agencies, eager to stem health and disability costs related
to the illness, had committed five million pounds to support the research.
Despite the
fact that the trial has been completely debunked by many scientists around the
world the authors, who had considerable influence and power in media,
government, insurance companies and the UK establishment, were able to control
the media message and perpetuate the myth that the illness was fundamentally
perpetuated by unhelpful illness beliefs.
There is
much written about the PACE trial and calls for its retraction. Here are two
informative studies. The first paperis a published peer reviewed article which
concludes:
“The claim
that patients can recover as a result of CBT and GET is not justified by the
data, and is highly misleading to clinicians and patients considering these
treatments”
The PACE
trial has been rejected not only by patients and advocates, but also by prominent
scientists and clinicians. Hard to believe treatments like these are
recommended by NICE and some other agencies. The public needs to know the facts
about the £5M PACE trial. See reanalysis:
“Rethinking
the treatment of chronic fatigue syndrome—a reanalysis and evaluation of
findings from a recent major trial of graded exercise and CBT”
Paper here
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