BACME: Position Paper on the management of Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS), Oct 2020

TC explains the 'biology' of CFS.
From TC & Mary Burgess book 'Overcoming chronic fatigue'
Physiological aspects of chronic fatigue syndrome

Many people with CFS are concerned that their distressing
symptoms may be related to a disease that hasn’t been
detected. Others, who had a viral infection at the time their
CFS began, are concerned that the virus is still present or
has caused damage to the body. Intensive research has
tried to establish a physiological explanation for the very
distressing and debilitating symptoms experienced by
people with CFS.

Over time, reduced or irregular activity and increased
periods of rest cause physical changes in the body. These
changes can both exacerbate the unpleasant sensations of
CFS and cause additional symptoms such as increased
muscle pain during exercise. It is important to point
out that these changes are reversible with physical
rehabilitation and/or exercise.

Researchers have looked at the effects of rest in healthy
people when they reduce their activities, and many similarities
between healthy inactive people and people with CFS
have been noted. The following paragraphs describe the
effects on the body of prolonged periods of inactivity, and
how these effects are experienced.

Changes in muscle function
A decrease in the number of active cell mitochondria (tiny
parts of the cell that produce energy) and their enzymes
has been found in the muscles of CFS patients when compared
with healthy active people. This reduction of cell
mitochondria has also been found in healthy inactive
people. Fewer cell mitochondria may lead to production
of lactic acid at low exercise levels, which in turn limits
muscle performance.
These changes may account for the feeling of a lack of power or
energy in the muscles.

Reduced activity leads to muscles being less efficient
(reduced in strength, tone, and size), and consequently less
effective in squeezing the blood back to the heart; this causes
blood to pool in the lower part of the legs.
Pooling of blood can cause pain both during activity and at
rest.

When muscles are not used regularly, they become unfit
or deconditioned. When these muscles contract during
activity, uneven stresses are produced.
This may result in a feeling of weakness and unsteadiness
followed by delayed pain and discomfort.
In respect of this last point, it is important to note that for
everyone muscle pain and stiffness are natural consequences
of beginning a new exercise program or taking exercise to
which they are unaccustomed. They are therefore not an
indication that the exercise should be halted; only that it
should be built up gradually.

Changes in the cardiovascular system
The cardiovascular system(which incorporates the heart and
blood vessels) loses condition very quickly with rest. The
longer you rest, the more changes occur.
Physical changes that occur with cardiovascular deconditioning
include:
• after one or two days’ bed rest, reduced blood
volume; after eight days’ bed rest, reduced volume of
red blood cells, which reduces the oxygen-carrying
capacity of the blood;
• after 20 days’ bed rest, the volume of the heart reduces
by about 15 per cent, so that less blood is pumped to
other organs.
The physical changes described above may result in making you feel
breathless or dizzy when exercising, and contribute to your fatigue.

Regulation of body temperature
Changes in the blood flow to major body organs occur
following prolonged rest, and these lead to changes in
surface body temperature.
This may result in feeling hot and/or cold, with excessive and
inappropriate sweating at times.

Changes in sight and hearing
Prolonged bed rest results in a ‘headward’ shift of bodily
fluids.
This may result in visual problems and sensitivity to noise.

Reduced tolerance to activity or exercise
General deconditioning of the body occurs as a result of
prolonged rest or reduced activity.
As fitness reduces, it is harder work to be active.Muscle fatigue
and feelings of heaviness, as well as a general increase in overall
fatigue, occur when activity is resumed.

During periods of prolonged physical or mental exertion,
the nervous system is more active than normal and adrenaline
production is raised. This leads to symptoms similar to
those experienced in a flu-like illness, such as aches and pains,
headache, sweating, feeling hot and cold, chest tightness, and sore
throat. If a person experiences these symptoms after activity,
they may reduce or avoid activities, as they may believe that
they are coming downwith flu or a cold. Limiting activity can
perpetuate the symptoms and lead to a further reduction of
fitness and muscle strength.

Changes in the nervous system
One of the functions of the nervous system is to coordinate
the muscles. Regular performance of an activity is required
to maintain good coordination. Prolonged periods of
inactivity therefore reduce coordination.
This may result in unsteadiness, clumsiness, and reduced accuracy
on carrying out precise movements.

Changes in mental functioning
Prolonged rest deprives people of intellectual stimulation
and has a dulling effect on intellectual activity.
This may impair concentration, memory, and the ability to find
the correct word.

Alteration of the biological clock
The ‘biological clock’, which is located in a part of the brain
called the hypothalamus, regulates many body rhythms that
run on an approximate 24-hour cycle. These rhythms are
called ‘circadian rhythms’, and they control vital functions.

.....
As the symptoms of chronic fatigue syndrome are similar to
those of jet-lag, circadian rhythms of people with CFS have
been investigated. Evidence from some studies indicates
that CFS is associated with the biological clock losing control
of the body rhythms.
What may happen is an infection, a very stressful life
event, or an accumulation of persistent stress causes worry
and disturbs sleep at night. This leads to irregular times of
getting up and going to bed, and more rests taken during the
day. Thus the usual daily routine and normal sleep–waking
cycle, both needed to reset the biological clock, are disrupted.
The biological clock then loses control over body rhythms,
resulting in the mental and physical symptoms of CFS.
Disturbance of cortisol production
Cortisol is a hormone whose production is controlled by a
circadian rhythm. It sets our metabolism in action in the
morning to prepare us for the physical and mental challenges
of the day. Exercise, other activity, and stress cause an
increase in the level of cortisol in the bloodstream.

Research shows that some people with CFS also have a
lower than normal level of cortisol; it is thought that these
low cortisol levels are probably caused by disrupted sleep
and irregular activity.
Low cortisol may add to the feeling of tiredness, decreased
alertness, and poor performance seen both in people with CFS and
those who work on night shifts.
Disturbance of the sleep–wake rhythm
Most people with CFS complain of poor-quality sleep.
Common problems include difficulty in getting to sleep,
restlessness, waking in the night, and waking feeling
unrefreshed and sleepy.
In a studywhere the sleep patterns of healthy volunteers
were deliberately disrupted to make them similar to those
of people with CFS, they developed symptoms similar to
those of CFS, including feeling unrefreshed and physically
weak, sleepiness, poor concentration, and muscle aches.
However, when they were allowed to sleep undisturbed,
their symptoms subsided. This study indicates that a
disturbed sleep pattern can cause some symptoms of CFS,
but that these symptoms are reversible.

Disruption of sleep can affect the activity of the immune
system, possibly increasing vulnerability to colds and
infection.
Inactivity and being deprived of sleep cause an increase in the
feelings of effort and fatigue when performing activity or exercise.

Increased heart rate
This can be felt as a racing pulse, palpitations, pounding, or
tightness in the chest.
Some people feel very frightened by these sensations and
so become yetmore anxious, resulting in a further release of
adrenaline that maintains the physical sensations.

Breathlessness, which can lead to hyperventilation
.....
Overbreathing also results in increased use of the muscles of
the head, neck, and shoulders, resulting in headaches and localized
stiffness and pain.
Overuse of the neck muscles in hyperventilation can be accompanied
by sensations of tightness or soreness in the throat.

Increased nerve activity and release of adrenaline may also cause
excessive breathing through the mouth and reduced saliva
production. These result in a dry mouth, swallowing difficulties,
and the feeling of a lump in the throat.

Altered blood flow
When we are anxious, blood is redirected tomuscles to prepare
for action. Reduced blood flow to the skin may cause
pallor, pain, coldness of hands and feet, and sometimes numbness
or tingling.
Reduced blood flow to the bowel affects the passage of
food and can result in symptoms of irritable bowel; for example,
constipation and/or diarrhoea and abdominal discomfort.
Visual disturbance
Increased nerve activity affects the muscles of the iris (the
colored part of eye), causing the pupils to dilate and so to
let in more light. This may help to explain the sensitivity
to bright light experienced by some people with CFS.

Sleep disturbance
Adrenaline production increases at times of stress, so that
sleep disturbance, for example difficulty getting to sleep or
frequent waking, is very common; it may be accompanied by
nightmares and sweating.
Mental functioning

Everyone experiences physical symptoms of anxiety in an
individual way, and few people have all of the symptoms
listed above. However, when any of these symptoms are
extreme, they can easily be misinterpreted as signs of a
serious disease, and worry about this can trigger further
unpleasant symptoms; this vicious circle can occasionally
trigger a panic attack.
An increase in nerve activity and adrenaline production
can precipitate feelings of weakness and exhaustion on top
of the fatigue and muscle aches of chronic fatigue syndrome.
 
Such determinism is persuasive for the newly diagnosed.

It us impressive propaganda, weave a sprinking of truths into a narrative that seems to explain things when people are desperately looking hor explanations.

We still don't know how many body systems function fully, yet here we scrape the surface and pull together a unifying theory that could just as easily be found on a touchy feely pseudo scientific , middle aged second careerist blog ......
 
“What may happen is an infection, a very stressful life
event, or an accumulation of persistent stress causes worry
and disturbs sleep at night. This leads to irregular times of
getting up and going to bed, and more rests taken during the
day. Thus the usual daily routine and normal sleep–waking
cycle, both needed to reset the biological clock, are disrupted.
The biological clock then loses control over body rhythms,
resulting in the mental and physical symptoms of CFS.”


In my previous life I was a teacher of 4 to 5 year olds. I was ill for a while before I realised there was something going on, but thought it was stress - I was going to bed at 10pm, waking up at 3 or 4 am in a cold sweat about work, and then unable to get back to sleep before getting up at 6am ready to be at work for 7.30am. Funnily enough, people who work tend to have very set bedtimes and rising times because, y’know, they have jobs with set times and they need to be able to function at said jobs, and, in my case, it’s strangely hard to make up that lost overnight time by taking day time naps when you’re in charge of 30 4 and 5 year olds for 6 hours a day and have at least another 6 more of work to do outside that....

Patronising rubbish.
 
Patronising rubbish.[/QUOTE]

That's a very polite way of putting it @Blueskytoo

"In a study where the sleep patterns of healthy volunteers
were deliberately disrupted to make them similar to those
of people with CFS, they developed symptoms similar to
those of CFS, including feeling unrefreshed and physically
weak, sleepiness, poor concentration, and muscle aches.
However, when they were allowed to sleep undisturbed,
their symptoms subsided. This study indicates that a
disturbed sleep pattern can cause some symptoms of CFS,
but that these symptoms are reversible."

OR, to anyone with any inkling of science or physiology, it could mean that there is a disruption to the circadian rhythm in people with ME as even when they are allowed to sleep undisturbed they still show severe abnormalities in their sleeping pattern which results in unrefreshing sleep etc.

I think some copies of this section of this book could usefully be sent to some of the GDL committee to assist them with finalising the NICE Guideline and clarify some of the issues with advice being promoted by the "Specialist Clinics"
 
I prefer scientists who don't make stuff up, i.e. real scientists. Every single detail in Chalder's Tall Tales is made-up bespoke to fit the conclusions, not a single bit of this has anything to do with reality. This is exactly equivalent to inventing the celestial spheres. It explains nothing, has nothing to do with reality, it's just a story made-up to explain the most superficial features, as long as you don't actually care about accuracy.
 
In a study where the sleep patterns of healthy volunteers
were deliberately disrupted to make them similar to those
of people with CFS, they developed symptoms similar to
those of CFS, including feeling unrefreshed and physically
weak, sleepiness, poor concentration, and muscle aches.

Correlation ≠ causation.

However, when they were allowed to sleep undisturbed,
their symptoms subsided.

Well, yes they would because they are healthy volunteers.

This study indicates that a
disturbed sleep pattern can cause some symptoms of CFS,
but that these symptoms are reversible.

Oh no it doesn't. It demonstrates that using healthy volunteers to try to mimic symptoms of a chronic illness doesn't work. If anything it might suggest that the sleep disruption in ME isn't behavioural nor is it amenable to the standard sleep hygiene guff because following the standard advice at best makes no difference but, usually, makes the ME patient worse.
 
Correlation ≠ causation.



Well, yes they would because they are healthy volunteers.



Oh no it doesn't. It demonstrates that using healthy volunteers to try to mimic symptoms of a chronic illness doesn't work. If anything it might suggest that the sleep disruption in ME isn't behavioural nor is it amenable to the standard sleep hygiene guff because following the standard advice at best makes no difference but, usually, makes the ME patient worse.
This.

From all the nonsense in her book TC seems to honestly believe that CFs = feeling very tired & sleepy, and a bit achy, and generally mentally & physically sluggish. Plus anxiety.
It would be hysterical if it werent so catastrophically unfunny.
 
When I wrote about the FINE study, I came across a presentation by Alison Weardon, the lead investigator, in which she described CFS as comparable to really bad jet lag. The FINE trial was also the one which generated a qualitative report that quoted one of the therapists or providers involved as saying something like "the bastards just don't want to get better."

https://www.virology.ws/2015/11/09/...-sister-trial-been-disappeared-and-forgotten/
 
The BPS "reasoning" is so simplistic.
If ME physiology was so straightforward everyone would get better, easily.

My daughter and I had jet lag following an overnight flight back from USA in 2018. (Longstanding friend in US who I hadn't visited for 30 years).
I was pretty good after my first good, long sleep, my daughter took a few weeks to recover to her usual (aka baseline as per clinics).
 
When I wrote about the FINE study, I came across a presentation by Alison Weardon, the lead investigator, in which she described CFS as comparable to really bad jet lag.

The hallmark of a true BPS zealot.

Take a symptom of an illness and make a confident declaration that it is comparable to something a healthy person experiences and recovers from.

This is then seen as proof the issue is behavioural and ignores that the same proof can be used to say the symptom is not behavioural as altering the sick person's behaviour doesn't significantly improve or cure, but often makes matters worse.

Attempt to hide the proof that you've interpreted the information wrongly by not gathering accurate and meaningful data on harms.

Also, rather conveniently, the comparison to something relatively trivial, though annoying, to a healthy person conveniently diminishes the impact that symptom has on the function and quality of life of the patient.

Surround yourself with people who will faithfully fail to ask any difficult questions, intimidate, smear and seek to damage the reputation of anyone cheeky enough to have an independent thought.
 
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When self proclaimed experts show so little understanding of ME after decades of treating ME patients, it is time to remove them entirely from the field.

Anyone who can conflate ME with tiredness from lack of sleep clearly has never really listened to an ME sufferer.

I think CBT, from my limited experience, is part of the problem. A practitioner of directive CBT, or even of supportive CBT is not there to understand the patient's symptoms but to change our beliefs and behaviours to their version of more positive and healthy thoughts and behaviours. They neither have the medical knowledge, nor the understanding of ME and how activity affects us.

It's about brainwashing and filling in questionnaires. I can't see any place for CBT in treating, managing or supporting people with ME.

I suspect those who say it helped them had therapists who stepped outside the straitjacket of cookbook CBT and did a bit of human listening and sympathising. That can be done by any empathic health professional, it doesn't have to be a 'therapist'.
 
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