CFS/CFIDS/ME (Notes II)

Posted on November 14, 2013 by annecwoodlen

The ‘Oxford Criteria’ (1990) therefore defined CFS/ME as a syndrome in which:

• there is a definite onset (i.e., it is not lifelong)

• fatigue is the main symptom

• the fatigue is severe, disabling and affects both physical and mental functioning

• the fatigue has been present for at least six months, during which time it has been present more than 50 per cent of the time

• other symptoms may be present, particularly myalgia, mood and sleep disturbance.

In making a diagnosis of CFS/ME, it’s important to exclude other conditions that can cause some or all of the symptoms – although there are really no other conditions that look exactly like it in all its aspects. Fatigue, of a generally smaller degree is however a common accompaniment of anaemia (lack of blood), underactivity of the thyroid gland, diabetes, disturbance of kidney or liver function and persistent infection, especially with some viruses and more unusual bacterial infections.

Rarer causes include immune system diseases such as lymphoma, ‘auto-immune’ diseases such as SLE (systemic lupus erythematosus) in which many organs become inflamed, or underproduction of hormones from the pituitary gland of the brain.

The diagnostic approach In the majority of people who have CFS/ME, it’s possible to make a positive diagnosis of the condition based on its own features, in which case extra tests help to confirm that nothing else has been missed. An unhelpful line of thinking among ‘dinosaur doctors’ is to say to a fatigued patient, on receipt of a normal set of blood reports, that there is ‘nothing wrong’.

If you are reading this as someone who has or had CFS/ME you will need no expansion on the subject of how dramatic and devastating its impact can be.

Although it is part of the diagnostic criteria for CFS/ME that it should significantly impair performance intellectually and socially, these few words hardly do justice to just how much CFS/ME can change someone’s life. The level of impairment caused by CFS/ME can vary from fairly modest, in which an affected person can retain the ability to carry out most normal duties including work, provided this is paced and sufficient rest is allowed for through to the most severely affected people who can be bed bound and need total nursing care. CFS or ME can last for months to many years.

Treatments for CFS/ME There is a useful section in the NICE guidelines 2007 on CFS/ME. Treatments can be grouped under several general headings:

• Behavioural: o cognitive behaviour therapy (CBT) o graded exercise and pacing.

• Immune system. • Drug therapies: o antiviral o antidepressants o sleep promotion (hypnotics) o steroids and other hormones.

• Dietary supplements. • Complementary medicine.

Behavioural The basic principle underlying behavioural treatments states that being ill can be prolonged by wrongly held beliefs concerning the illness, and that modifying these beliefs and the behaviour that stems from them will make a person feel better.

Cognitive behavioural therapy (CBT) The primary type of this treatment is called cognitive behavioural therapy or CBT. A few studies have shown it to be an effective way to achieve improvement in CFS/ME, at least for some people. However CBT has had a mixed reception from some experts and many patients, for several reasons. If CBT is taken to imply that CFS/ME is ‘just psychological’ or ‘all in the mind’ then of course it would deserve to be treated with contempt. The main difficulty with CBT is that it generally requires to be carried out in conjunction with a therapist. 10 to 20 one-hour sessions would be the norm, with ‘homework’ to be done between sessions.

Provided it’s approached in a positive way, CBT will not make anyone worse. But it won’t always help either. It can’t be reliably predicted who will and won’t benefit.

Graded exercise It’s clear that many people with CFS/ME who try to keep going at their old, pre-illness pace, or who push themselves hard in an effort to force recovery can cause themselves more harm than good in the short term as they are likely to activate more symptoms.

Pacing Pacing means living within a given envelope of activity defined on the basis of how much someone can do comfortably. By managing their energies conservatively, they can therefore extend their periods of activity. Pacing is not recommended specifically in the NICE guidelines due to lack of clear evidence of effectiveness.

Immune system As subtle abnormalities of the immune system have been proposed as possible causes of CFS/ME, several types of treatment have been tried that one way or another have immune system effects. The results have been disappointing, although not entirely negative.

Injection of antibody protein (immunoglobulin G, IgG) was tested in several trials, some of which showed partial benefit, others showed none and all had significant side-effects from the treatment.

Ampligen is an expensive drug still under evaluation in CFS/ME. But in the one published trial so far, it showed benefit and was well tolerated. Drug therapies

Antiviral The logic behind using antiviral treatment stems from the possible role of virus infection in causing CFS/ME.

The antiviral drug aciclovir is not effective in CFS/ME.

Antidepressants There are several reasons why it can be worthwhile to use an antidepressant in CFS/ME.

Several symptoms of depression, such as fatigue and sleep disturbance are also found in CFS/ME. It’s theoretically likely that there are some similarities in the brain chemistry changes underlying both conditions.

Sleep promotion Sleep deprivation is an effective form of torture and conditions or circumstances associated with disruption to sleep are invariably associated with fatigue.

A simple explanation is that during sleep the electrical and chemical functions of the brain and nervous system are reset and recalibrated ready for the next wave of wakefulness and the levels of messenger chemicals within the system are replenished.

There is more to getting a good night’s sleep than not being awake for a few hours which is probably why medicines to make people sleep (hypnotics) can have disappointing results. The sleep thus gained is not necessarily refreshing – a point often remarked upon by people with CFS/ME.

About annecwoodlen

I am a tenth generation American, descended from a family that has been working a farm that was deeded to us by William Penn. The country has changed around us but we have held true. I stand in my grandmother’s kitchen, look down the valley to her brother’s farm and see my great-great-great-great-great-grandmother Hannah standing on the porch. She is holding the baby, surrounded by four other children, and saying goodbye to her husband and oldest son who are going off to fight in the Revolutionary War. The war is twenty miles away and her husband will die fighting. We are not the Daughters of the American Revolution; we were its mothers. My father, Milton C. Woodlen, got his doctorate from Temple University in the 1940’s when—in his words—“a doctorate still meant something.” He became an education professor at West Chester State Teachers College, where my mother, Elizabeth Hope Copeland, had graduated. My mother raised four girls and one boy, of which I am the middle child. My parents are deceased and my siblings are estranged. My fiancé, Robert H. Dobrow, was a fighter pilot in the Marine Corps. In 1974, his plane crashed, his parachute did not open, and we buried him in a cemetery on Long Island. I could say a great deal about him, or nothing; there is no middle ground. I have loved other men; Bob was my soul mate. The single greatest determinate of who I am and what my life has been is that I inherited my father’s gene for bipolar disorder, type II. Associated with all bipolar disorders is executive dysfunction, a learning disability that interferes with the ability to sort and organize. Despite an I.Q. of 139, I failed twelve subjects and got expelled from high school and prep school. I attended Syracuse University and Onondaga Community College and got an associate’s degree after twenty-five years. I am nothing if not tenacious. Gifted with intelligence, constrained by disability, and compromised by depression, my employment was limited to entry level jobs. Being female in the 1960’s meant that I did office work—billing at the university library, calling out telegrams at Western Union, and filing papers at a law firm. During one decade, I worked at about a hundred different places as a temporary secretary. I worked for hospitals, banks, manufacturers and others, including the county government. I quit the District Attorney’s Office to manage a gas station; it was more honest work. After Bob’s death, I started taking antidepressants. Following doctor’s orders, I took them every day for twenty-six years. During that time, I attempted%2
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