Archive for the ‘ME/CFS’ Category

M.E. Awareness day

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M.E. awareness month

The month of May is “ME Awareness Month”, with May 12th being the particular day, and I have also seen the week starting May 11th designated as ME awareness week.

ME is classified by the World Health Organisation as a neurologically-based disease. It is of unknown cause, although there are several theories including viral and environmental agents. There is no known cure.

Unfortunately, in the UK the NHS seems to have ignored the WHO’s classification of ME as a specifically neurological illness, and has lumped ME together with any and all unexplained tiredness and fatigue, which can in fact be caused by a number of things, including Lyme Disease, Lupus, vitamin B12 deficiency and Pernicious Anaemia, Thyroid and adrenal problems, Sjögren’s, PCOS and other endocrine diseases, MS, fibromyalgia, depression and more, and has called the whole collection CFS, MEcfs or cfsME.

Within the umbrella of CFS there is obviously a vast spectrum of symptoms which range in severity, from those who are experiencing a mild loss of ‘get up and go’ to those who are in constant pain and utterly bedbound and unable to care for themselves, and since it is an umbrella term, treatments that may be helpful for mild types of CFS, such as GET – graded exercise and CBT – cognitive behavioural therapy, are wholly inappropriate and can be harmful for those who actually have ME.

CBT can be useful for people not coping well with any long term chronic illness but should not be touted as a main treatment for ME in the way that it is, based on the faulty assumption that CFS is inevitably linked to caused by psychological factors, and GET is harmful to PWME who have the key symptom of Post exertional malaise.

This situation has been exacerbated by the psychiatric establishment which has greedily claimed all ‘CFS’ patients as their own, baselessly alleging that all CFS must be related to mental and emotional factors.

Thus the tendency is to treat all CFS patients as though they are all suffering from an unexplained, probably psychologically-based, rather than neurologically-based illness, regardless of the severity, and further to fail to investigate thoroughly or adequately in order to rule out any other cause (such as those listed above).

There is no definitive test for ME yet (largely because genuine research has been so scarce), and so ME should never be diagnosed until every other possible cause has been eliminated.

The classification of ME together with any unexplained CFS is a nonsense which means that people who actually have curable and treatable diseases aren’t getting the help they could and should be able to expect, while those with ME are simply treated with disdain instead of receiving the palliative care they need.

This is a wholly unacceptable situation for everybody involved, which helps no-one, except those few outspoken psychiatrists who like to gain notoriety by making the psychological case and denying the reality of the suffering.

A friend has also pointed out that MS, asthma, duodenal ulcers and other illnesses were all considered psychiatric problems before biomedical caught up.

Thanks to “life for beginners” for the reminder and the post.

7 lessons from geese

 

 

 

When I’ve not posted for a while It’s usually because I’ve been curled up with pain or wallowing in fatigue, BUT this time I’ve been on holiday in Norfolk with my partner. It is easy to drift apart and holidays are the perfect way to reconnect.

I am inspired to write about the lessons we can learn from geese! Draw your own conclusions.
Animals Waterfowl_Wild Formation

Sharing a commonality:  As each goose flaps its wings it creates “uplift”, an aerodynamic orientation that reduces air friction, for the birds that follow. By flying in a V-formation, the whole flock achieves a 70% greater flying range than if each bird flew alone.

Notice what’s happening: Flying in a V-formation increases the visibility as every goose can see what’s happening in front of them.

Rely on each other: When a goose falls out of formation, it suddenly feels the friction of flying alone. It then quickly adjusts its mistake and moves back into formation to take advantage of the lifting power of the bird immediately in front of it.

Empower each other: When the lead goose in the front gets tired, it rotates back into the formation and allows another goose to take the lead position.

Constant encouragement: The geese honk to recognize each other and encourage those up front to keep up.

Offering support: When a goose gets sick or wounded, two geese drop out of formation and follow it down to help and protect it. They stay with it until it dies or is able to fly again. Then, they launch out with another formation or catch up with the flock.

Staying committed: The geese migration routes never vary. They use the same route year after year. Even when the flock members change, the young learn the route from their parents. In the spring they will go back to the spot where they were born.

Nothing doing, Wu Wei.

Wu Wei is active inactivity  (not just a theme on the wordpress site)

wuwei

For me it is the action of “relinquishing self expectation” (thanks Sue) or the practice of doing nothing. It’s also taking (present tense as it’s a learning curve) a long time to accept.

Soooo, what’s wrong with reading a book during the day? Nothing right? you probably do it yourself.

Well actually I mean all day.every day, sometimes interspersed with TV, radio or sleep!

Great you say, bring it on.

However, I’ve been doing this since I was diagnosed with M.E. -4 years now – but not with any commitment to myself or the real Taoist principle , just because that’s what the illness does to me. Most of the time I do want to go out, do stuff and have a life!(Or rather my life back)

A virus for 3 weeks over the holidays, follow by a heavy cold at present, meant I not only couldn’t do anything but didn’t give myself a hard time for it.

So back to my reading then. Care to join me?

Just a short weekend

A 17.5 hour course ,over 3 days, with meals and bed, how wrong could it go?

Northern College (I’ve been many times) shifted places in the landscape as I directed my good friend towards it! How the hell could I get lost? it’s almost a straight road!

This was followed by being unable to remember how to switch on a computer, how to follow a simple directive (3 times being told which button to press).

However I did manage to plug the camera in and download the images – yippee!

DSCF0356

Then came the crash, about 2.30pm I couldn’t keep upright, keep my eyes open or remember how to get to my room.

Of the the 6 major issues with my M.E. (Fatigue, Sleep Dysfunction, Pain, Neurological and Cognitive Dysfunction, Neuroendocrine Manifestations and Immune Dysfunction) the fog and confusion hit without warning – again.The usual slow intake of information and processing, lack of short term memory, inability to focus vision and attention together with spacial and perception disturbance chose this weekend of all weekends to land, closely followed by a cold!

All this being said, I still enjoyed it, yes I slept (insomnia to hypersomnia in a minute) and rested loads, but I was supported by the tutor and the students and enjoyed the course.

G.E.T. 4 M.E.

“Got ME? Just get out and exercise, say scientists.”
(Independent:)

“Talking and exercise could cure ME.”
(Sky News:)

Headlines like these have become increasingly common in recent years. They refer to the results of the PACE trial, a government-funded study into the safety and efficacy of graded exercise and cognitive behavioural therapies (GET/CBT) as treatments for ME.

The trial ostensibly showed that structured exercise can be used to treat ME, but ME specialists condemn the research as flawed, misleading and potentially harmful. No one denies the importance of patients remaining as active as possible within safe limits; the question is whether goal-focussed programmes that push against those limits are helpful or harmful when it comes to ME.

1. PACE promotes the theory that ME has a primarily psychosocial cause

Despite substantial evidence for the physical basis of ME, psychiatrists behind the PACE trials believe it to be a form of personality disorder perpetuated by psychosocial factors.

Attempts to prove the psychosocial model have achieved precisely the opposite: studies have shown that ME patients do not suffer from exercise phobia, are no more prone to personality disorders than patients with any other chronic illness and are no more deconditioned than healthy, sedentary controls who do not feel ill doing normal physical activities.

2. Many patients report that graded exercise made them sicker

Results of PACE seem very different to patient experiences of graded exercise. Surveys of patients found the majority claim to have had no benefit from exercise or to have wound up sicker, yet the PACE trial claimed 60% of participants improved.

Physical exertion has been repeatedly shown to have a measurable effect on patients with ME, causing muscle abnormalities, neurocognitive impairments, decreased motor speed, poor reaction times, reduced peak flow and abnormal brain activity. People with ME have a reduced capacity to recover from exertion and this exercise intolerance has a cumulative effect until patients reach a point where their capacity for exertion actually decreases.

The PACE researchers acknowledge that poorly-delivered graded exercise can make patients worse but the UK has very few physiotherapists qualified to deliver specialist care.

 3. Patient selection for the PACE trials was extremely controversial

The PACE trials were based upon the Oxford criteria for CFS/ME, which focuses on fatigue as the primary symptom. The focus on idiopathic fatigue means patients with misdiagnosed or co-morbid psychiatric diagnoses (such as depression, anxiety, and somatoform disorders) were not excluded from the trial. All these disorders are known to cause fatigue and to respond to exercise and CBT.

By the PACE researchers’ own reckoning only 67% of patients met the American CDC criteria for CFS and only 51% met the London Criteria which focuses on the exercise-induced fatigue required for diagnosis in the UK. Patients with primary symptoms other than fatigue were excluded from the trial as were children and anyone with severe ME, meaning its results cannot be extrapolated beyond a certain subgroup of patients. This is particularly important as many doctors (and the media) attempt to apply the results universally.

4. Data from the trial has been widely misrepresented

Two forms of assessment were used to measure patients’ fatigue in the trial: subjective patient questionnaires and an objective six-minute walking test. Figures quoted in the press were based upon patient perceptions of fatigue but the extent of perceived improvement was not substantially upheld in physical tests.

At the start of the trial, patients averaged a distance of approximately 300 meters in a six-minute walking test. The authors of the trial proposed a forty-five meter improvement as providing a ‘clinically useful’ outcome. The group that received medical care alone improved by twenty meters while the group that received graded exercise improved by thirty-five. As the graded exercise was in addition to medical care however, the first twenty meters of improvement may be attributed to this, meaning only fifteen meters can be attributed to the exercise itself. Few people would deny that a fifteen meter improvement after a year of therapy is hardly a miracle cure.

The furthest distance completed in the walking test was only half the average distance of a typical healthy pensioner. Fatigue levels were still higher at the end of the trial than for patients with congestive heart failure.

As fatigue is only one of many disabling symptoms of ME, a reduction in fatigue does not necessarily equate to a return to health or improvement in physical and social function. No data about patient recovery or deterioration has yet been published, so media claims that patients were ‘cured’ or returned to ‘normal’ following the trial are unsupported. There is no evidence that patients came off benefits or returned to work as a result of the trial, in fact receipt of benefits was found to have increased. Given ME is characterised by periods of remission and relapse it will be interesting to see whether improvements are sustained in the longer-term.

From: Dead Men Don’t Snore Oct 22nd 2013

Couldn’t resist this

atos

 

From: oopster74

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