Saturday, September 27, 2008

Game, Set, Match

I have repeatedly been challenged on my statement that until the HIV virus was discovered, AIDS was considered psychiatric in nature. 

I have now provided a dozen quotes from a variety of sources  http://journals.aol.com/kmc528/Lifeasweknowit/entries/2008/08/22/heres-the-proof/2169, with not a single quote provided by the other side to support their assertion that I am wrong.  If my statement is false, then there are a lot of people who've heard and cited to the same myth, some of them with important titles or initials after their names.

Therefore, by a score of 12-0, this matter is now set to rest once and for all, and future demands for proof will be ignored, since adequate proof has now been amassed to satisfy me that the information I'm basing my statement on is accurate.

Of course, just as we've seen with the tons of medical evidence that CFS has biological origins, there are some people too stubborn to accept reality, and will continue to dispute a statement long after it's been proven to the satisfaction of everyone else, rather than change their minds.  And I will allow them to continue to post here, so that the whole world can see the identities of these people who should not be allowed anywhere near CFS patients.

CFS/ME has a physical cause

http://www.therapytoday.net/index.php?action=viewLetters&magId=19

ME has a physical cause

I read with interest, but also concern, the research paper on counselling
people with ME (CPR, June 2008) and the article 'Living with ME' (therapy
today, June 2008). I take issue with the idea that ME is a disputed
condition. What may be disputed is how many illnesses are currently hidden
in the catchall diagnosis of ME/CFS.

The World Health Organisation classified ME as a neurological disorder in the International Classification of Diseases (ICD) in 1969. ME Research UK states that 'ME is a neurological illness with evidence of immunological and toxicological signs, clear disturbances to the neuro-endocrine stress axis, impairment of the autonomic nervous system, irregularities in the perfusion to the brain and indeed to the peripheral vascular system confounded by red blood cell abnormalities with recent evidence suggesting a hypercoaguable state - all of these extensively documented findings' (Dr V A Spence, ME Research UK website, November 2000). Dr Spence says that people with CFS have poor immune activation and poor cellular function, and that it is often a disease with remission-exacerbation cycles.

While I believe that it is likely there are physiological and psychological
aspects to all illnesses, to treat either ME or CFS with only CBT and graded
exercise is to ignore all biological abnormalities
. Stress, for example, may
be a contributory factor in some heart attacks and some cancer. However, the
first port of call in treatment is to deal with the physical issues, not to
ignore these and only offer CBT. The sufferers of these illnesses may feel
they could benefit from counselling, but everyone would expect the physical aspects of the illness to be treated. This is, by and large, being denied to sufferers of ME and CFS.

The psychological and medical worlds should learn from history. ME and CFS are not the first illnesses to be claimed to be psychological in the first years of their appearance. In every case, this approach takes away money from research into the potential physical causes of the problem for years.
My mother can recall children being beaten and made to stand in the corner
after having an epileptic fit because they were seen as being attention
seeking. Not much has changed. In more recent years, children suffering from
severe ME have been thrown into swimming pools in the belief that this would
cause them to start swimming and thereby prove to them that their inability
to move had been all in the mind.

CBT is a kinder treatment than that. However, to read the article in CPR where it is quoted that people with ME who are 'psychologically minded. are more likely to do better with CBT', is verging on praising/blaming the
sufferer for whether or not they recover. At the present time, perhaps we should be investing more money into understanding what ME and CFS actually are before we pass judgement on whether or not the sufferers have got the right attitudes.

Barbara Jeffries


~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~


ME patients struggle to be heard

Thank you to the authors of the research paper 'The experiences of
counselling for persons with ME' (CPR, June 2008) for giving a voice to ME
patients and introducing a breath of fresh air into the ME/CFS debate. The
research is timely as the guidelines set down by NICE that CBT be the first
therapy of choice for ME is contested by ME patient groups and those engaged
in biomedical research into ME. On 19 June an ME patient won a significant
legal victory after a leading judge declared it 'in the public interest' for
the High Court to rule on claims that treatments being offered on the NHS
are 'potentially fatal'
. The case will now go to judicial review. The two
treatments in question are CBT in conjunction with GET (Graded Exercise
Therapy).

The level of protest represents a landmark in the continuing struggle with
which ME patients are engaged in order to have their views heard and
respected and, as the research paper intimates, underlines the need for
therapy practitioners across the board to be mindful of their approach in
working with clients who have ME. The research paper is a useful pointer to
the direction that CBT needs to take if it is to be acceptable and helpful
to ME patients.

I would like to expand upon the political backdrop to some words that were
highlighted in a summary of the above piece of research in therapy today:
'People living with ME are likely to react badly to any suggestion that psychological factors play a major part in either onset or maintenance [of their condition].' There are cogent reasons why the ME patient population reacts in this way and these have little to do with a defensiveness around the area of the links between psyche and soma.

I have had severe ME since 1989, a condition that devastated my life on many
levels, including having to give up my career as a psychoanalytic
psychotherapist. I would not have had an awareness of the condition if I had
not had two clients, at the time of becoming ill, who were suffering from
ME. These clients were so clearly physically ill that it never occurred to me to translate their illness as psychological in aetiology and the basis of
our work was to aid with adjustment to the illness and the considerable
losses attached to it.

I can best describe my own experience of contracting ME as like having been
in a car crash. Within six weeks of contracting a throat virus, I went from
living a full, challenging and happy life to being completely bed-ridden -
unable to walk, in extreme pain, and suffering from total brain fog/fatigue.
Like every other ME patient, I was desperate to get back to my 'normal' life
but despite every endeavour this never happened
. As the research paper
indicates, pacing and self-management is the main strategy that enables me
to live a life beyond being totally bed bound, though I do use a wheelchair
24/7.

However, I was extremely fortunate in having a GP who knew me well and it was his certainty that whatever ailed me was physical in aetiology that saved me from having to enter the nightmare world that many ME patients have entered; where their 'truth' about their illness - whatever started it, whatever maintains it - is constantly challenged by practitioners who have been indoctrinated by a view of ME that maintains it can be vastly improved using certain psychological techniques (a version of CBT) and GET.

The above predicament for ME patients normally arises when faced with a
practitioner who adheres to the banner heading of 'aberrant illness
beliefs'. This banner was hoisted during the late 1980s and throughout the
1990s by the psychiatric lobby regarding ME. Sadly this lobby continues to
siphon off a large chunk of the funding that is long overdue in the area of
biomedical research. I can think of no other neurologically defined
condition where this is the case
. ME has become a political as well as a
social and health issue, and in decades to come will probably be highlighted
as an example of how muddied the waters become when government directives
based on financial considerations, and the rigid views/beliefs of
individuals in positions of power within the health system, take precedence
of patient testimony.

Every article and research paper that is positive towards the testimony of
ME patients needs to state that ME is recognised by the World Health
Organisation as a neurological illness - comparable to MS, Parkinson's and
other neurological disorders.
This fact was a glaring omission in the NICE
resume. Every researcher needs to state with clarity that the only criteria
that allows for the whole spectrum of severity and neurological disorder
when diagnosing ME is the Canadian criteria spearheaded by Bruce M
Carruthers (who is referenced in the research paper). Many argue that any
other selection procedure (for example the commonly used Fukuda criteria)
allows all manner of fatigue states to be included in the statistics of ME
research, and this has always led to gross oversimplification and skewed
results regarding treatment and long-term prognosis.

There is a huge divide between the work and opinion of Carruthers and what
has become known as 'The Wessely School' (also heavily referenced in the
research paper). Because this divide has had such an impact on patients,
both at the level of treatment on offer and how the condition is viewed
culturally, and most significantly the outcome for disability benefits, it
is useful for any counsellor involved with a client coming to terms with ME
to have a working knowledge of the broader issues. A good place to start is
to become familiar with the work of ME Research UK (www.meresearch.org.uk ).
Here one can read about the sterling work that is taking place within
biomedical research - work that is a corrective to the overt presence and
influence of the biopsychosocial model.

If, as a patient group, ME patients come across as vociferous in their views, it is because they find themselves in the peculiar position of having to persuade doctors/mental health practitioners that they are no more depressed than the average human being struggling with a debilitating illness, and in the main would like medical treatment based on a physiological understanding of the condition. It may be that there is a 'pure' ME as the research paper suggests - patients who are severely neurologically affected and are placed outside all of the other sub groups
who have been placed under the collective label ME/CFS - but even if this
proves to be the case, the role of counsellors does not change. Members of
the profession are called upon to work with compassion and integrity,
assisting clients who range in age from the very young to the elderly, to
come to terms with grief and loss, and hopefully to re-constitute a life
that is still meaningful despite its limitations.

Paula Burns
www.paulaburns.co.uk

* * *

As Burns states, it is clear to psychiatric experts that this is a PHYSICAL illness.  Every trained counselor, psychologist and psychiatrist who has examined me has stated that I lack the emotional symptoms necessary for a psychiatric diagnosis, and it sounds like the flu to them.  And when this opinion is taken back to the MD or the judge, who has little or no psychiatric training, he nonetheless substitutes his own imaginary "expertise" for the years of training and experience of the real experts.

Yes, there is some symptom overlap between CFS and depression.  It is quite common for patients who have a virus/fever to spend a great deal of time in bed and to have difficulty concentrating ... because of the fever and the physical toll of fighting the illness, not because they're depressed.  However, there are many symptoms which don't overlap, and there, I have the ones that point toward CFS, and do not have the ones that point toward depression: I don't cry, I'm not suicidal, and I don't have low self-esteem, as evidenced by the fact that I have told off a number of doctors ... I don't buy into their nonsense that they are intelligent men and I am stupid by virtue of being female.  I'll put up my SAT score against theirs any day. 

The truth about my illness has been challenged from the very first by doctors who refused to acknowledge that a virus can, in fact, have long-term consequences, and were annoyed that I steadfastly kept repeating the truth "all my symptoms started with a high fever and flu-like illness" instead of buying into their brainwashing that all my symptoms were somehow related to my marital status (I've had the same symptoms before, during and after my marriage, therefore it makes no sense to say that my symptoms are somehow related to my husband, because I originally got sick before we got married, when he exerted no control over me whatsoever).

If this is what it takes, I'll repeat it until I am blue in the face, and in ever-smaller words in hopes that it finally gets into their little pea brains: I have a post-viral neurological condition which has much in common with MS.  MS is not caused by marital status, and neither is what I have.  Counseling does not fix MS and counseling will not fix what I have.  It is a post-viral neurological condition and no one with psych training has ever EVER found reason to diagnose me with depression.

Which brings me to my other hobby horse: MDs should not be allowed to place psychiatric diagnoses in the records unless and until that diagnosis has been made by a competent, qualified, psychiatric professional.  I have as much psych training as the average MD and I would never consider myself sufficiently expert to make a psych diagnosis.  I might urge a friend to seek out a mental health professional because of what I see, but I'd never think I'm qualified to say "you're depressed, here's some Prozac" just because I took Psych 101 and recognize a few symptoms.  Unfortunately, too many CFS patients have unwarranted psych diagnoses in their records made by MDs who found it easier to make an erroneous psychiatric attribution than to tax their brains to make the correct medical diagnosis.

And when I made sure that I fed one doctor every single symptom that proved that it was not the depression that he wanted to diagnose, he ignored me, and later said "nothing you said made sense".  He's right -- it didn't make sense in the context of depression, because I'm not describing depression.  If he'd known the first thing about CFS, my description of the symptoms would have led him right to it, but he knew nothing about my condition.  Instead, he slapped on an inaccurate psychiatric label and then blamed me when psychiatric treatment didn't cure a post-viral neurological condition that is neither caused nor cured by the mind. 

Blaming the victim is only a solution when you want to avoid your own responsibility in creating the mess.

I'll agree with the first letter-writer that there are a lot of people wrongly diagnosed with CFS, which again goes back to doctors who don't know the first thing about it.  Too many of them are under the impression that every case of chronic fatigue is Chronic Fatigue Syndrome.  They don't know the diagnostic criteria, they don't know there are symptoms other than fatigue.  But again, the problem lies not with the patients, but with the doctors' ignorance.  The patients didn't diagnose themselves: some doctor who did not know what he was talking about felt compelled to make a diagnosis, even a wrong one, rather than refer the patient on to specialists who could make a correct diagnosis and get the patient into the correct treatment.

Early treatment is the key to reversing CFS.  The longer appropriate treatment is delayed, the less likely the patient will have a full recovery.  Some treatments have been proven dangerous, landing patients permanently in wheelchairs or even bedridden, yet those treatments continue to be prescribed by doctors who find themselves unable to say "I don't know" and seek advice from someone who does know.

As Dr. Bruno says "In this new millennium medicine must not be about doctors’ egos..." The patients must be listened to and taken seriously. Writing down exactly what the patient tells you is more valuable to a proper diagnosis than writing down what you wish the patient would have said.  Blaming the patient must stop.  Wasting patients' irreplaceable time and money with wrong treatments for the wrong condition is simply unconscionable.  If you don't know, say so, and find someone who does.

Not Just A State of Mind

http://edinburghnews.scotsman.com/comment/Time-to-wake-up-to.4448050.jp


Time to wake up to fact that ME is not just a state of mind
-----------------------------------------------------------

It came as no surprise that a leaked health service report revealed that ME
is a condition that has been neglected for years and the treatment of it is
in radical need of a shake-up.

The wide-ranging study of more than 160 sufferers showed they felt they were
neglected and not listened to by the NHS, there were no strategies in place
for them, and there was a lack of advice concerning support groups. A
"disbelieving culture" was also cited as a problem
in a disease that is
believed to affect up to 250,000 people in the UK -- around 4000 of whom are
thought to live in the Lothians.

However, a list of recommendations in the report -- together with an
expected paper from the Scottish Government later this year -- has led to
optimism among charities supporting Myalgic Encephalomyelitis (ME).

Authors of the report, Anne-Marie Comber, a patient involvement worker for
the Edinburgh Community Health Partnership, and senior health promotion
specialist Liz Simpson, highlighted ten areas for improvement in the way the
disease, which is sometimes called Chronic Fatigue Syndrome, is dealt with.
They said ME should be "taken seriously from the earliest stage and patients should be listened to" because an early diagnosis can help with future problems when the disease takes hold.

Health professionals need to be more honest with patients, they said. They also need to abandon "negative attitudes"
and produce leaflets highlighting what support and help was available.

The report said: "The responses to this survey have described a cluster of
conditions that have a major impact on people's lives. Some are forced to
take drastic steps to change their lives in order to cope. Examples of good
practice mainly centred around sympathetic staff attitudes, helping patients
feel they were being listened to. "Many of the respondents reflected a
negative response from services and the public towards having these
conditions, which focus mainly ona disbelieving culture -- the conditions
treated as not real and individuals seen as hypochondriacs. The conditions
were treated as if they were mostly psychosocial or 'in the mind' rather than
having physical symptoms."

There are still many gaps in the understanding of ME at a clinical level. It
is a physical illness, and many sufferers are fobbed off with being told they are in fact undergoing mental or emotional problems.
It remains difficult to trace, and can have various effects on people.

In some it can mean, with appropriate treatment and care, the sufferer can
lead an entirely normal life. At the other end of the scale, it can render
some people virtually helpless, in some cases with them unable even to feed
themselves. One factor of the care offered by the NHS was that there was no
difference in the way sufferers were treated, regardless of age or severity
of the condition.

The report even found that a lack of structure in the way care was offered
led to desperate sufferers seeking their own remedies and making things
worse. It continued: "Suggestions for service improvements given by the
respondents seemed neither costly nor unrealistic. Listening to and accepting what patients say would also make a huge difference."

The report will be published once NHS Lothian has an ME lead in place to
oversee its implementation. It is understood to be the most comprehensive
survey of ME in the Lothians area, and when it was put out ME charities were
impressed with the level of response. Among those strongly-worded replies
included tales of doctors refusing to diagnose the illness and people having
to resign because their bosses wouldn't believe they had ME.

One respondent said: "He (the doctor] put the fatigue down to viral
infection, then stress, then anxiety/depression, and treated it as depression
with medical support. He was reluctant to give me the diagnosis ME, he was
keen to give the diagnosis a mental emphasis."

Ana Semple, 63, a committee member of the Edinburgh ME self-help group, has
had ME for 20 years. She said: "Since I was diagnosed, public attitudes have
improved. Everyone has heard of it and most people know someone who has it.
In some quarters it has led to people saying you are shying away from life,
but in reality, ME sufferers who try and show they aren't can do themselves
more harm than good. But in that time the services have never been there.
Hopefully if everything in this report is implemented it will lead to a
drastic improvement."

Jackie Sansbury, director of strategic planning and modernisation, NHS
Lothian, said: "NHS Lothian has now completed a piece of work, which was one
of the first of its kind, to identify the needs of patients with ME. The
report will form the basis of further discussions between health care
professionals and local patient groups on how we take services forward in the
future. At this point it would be premature to say how the future of ME
services will change."

--------
(c) 2008 Edinburgh Evening News

* * *

This is the biggest problem that I've faced: doctors who are convinced that because I'm a woman, I have psychiatric problems.  When I was married, it was attributed to "resenting your husband making you work" and when I was divorced it was attributed to that.  A single friend was told that she could cure her CFS by getting married.  It doesn't matter what your marital state, some doctors seem to think you'll improve if you change it.  And if your symptoms don't improve, they think you should change it again!

When I've said it was not psychiatric because there was viral onset, it's been pooh-poohed, or ignored completely.

When I've reported that anti-depressants were useless or, worse yet, made me sicker, I was deemed "uncooperative" and subjected to verbal abuse about not wanting to go back to work.

Doctors turn things around in their minds until the cause/effect fits what they want to hear.  I was told that I didn't stop exercising because I got sick, I got sick because I stopped exercising.  I wasn't fired because my symptoms were so bad that I couldn't work, I developed symptoms/depression after being fired, and therefore, all I had to do to cure myself was to go back to work ... to the job that I was unable to perform because of the symptoms!

The #1 thing that I, as a patient, want to say to doctors is LISTEN TO ME, DAMMIT!  Don't sit there twisting things around to make them fit ... you'll make a better diagnosis if you write down exactly what I tell you.

If I had gotten the pills I asked for the first time I asked for them, in 2000, I likely would have been back to work in a month or so.  Instead, it took years, and sufficient physical deterioration occurred that I'm now told I'll never work full-time again.  Not because I didn't want to go back to work, but because the doctors refused to give me what I told them would get me back to work in a jiffy.  It wasn't what they wanted to prescribe, because it wasn't what they wanted to diagnose.

Thursday, September 25, 2008

CFIDS.org News

Yesterday the House passed the National Pain Care Policy Act of 2008. The National Pain Foundation, led a coalition of organizations including the CFIDS Association of America, to introduce this legislation and secure a House vote before the 110th session of Congress ends. For more information, please visit www.painfoundation.org

* * *

It is time we had a pain care policy that ensures that patients with legitimate pain are able to get the medications they need.

In my case, one doctor wouldn't believe that I had arthritis because I had no x-rays showing it, but wouldn't order the x-rays himself.  As with the other doctors at that medical group, absolutely no interest in ordering any test that might provide the objective evidence needed to support my Disability application, only interested in ordering tests that should be normal.  And since the only test results they had were normal, they saw no need to prescribe pain medication.

Eventually, I saw someone willing to do x-rays, and, among other things, he found 3 fractured vertebrae that looked to be about 10 years old and NO ONE had ever discovered them because no one had ever looked for a source of the pain, other than assuming I was exaggerating.  When I told him the other doctors had called me a wimp who couldn't take a little pain, he laughed -- only someone with an extremely high tolerance for pain would break their spine and not even know it!

 

Wednesday, September 24, 2008

What more?

A US Air Force C-130 was scheduled to leave Thule Air Base, Greenland at midnight. During the pilot's preflight check, he discovers that the latrine holding tank is still full from the last flight. So a message is sent to the base and an airman who was off duty is called out to take care of it.

The young man finally gets to the air base and makes his way to the aircraft only to find that the latrine pump truck has been left outdoors and is frozen solid, so he must find another one in the hangar, which takes even more time. He returns to the aircraft and is less than enthusiastic about what he has to do. Nevertheless, he goes about the pumping job deliberately and carefully (and slowly) so as not to risk criticism later.

As he's leaving the plane, the pilot stops him and says, "Son, your attitude and performance has caused this flight to be late and I'm going to personally see to it that you are not just reprimanded but punished."

Shivering in the cold, his task finished, he takes a deep breath, stands up tall and says, "Sir , with all due respect, I'm not your son; I'm an Airman in the United States Air Force. I've been in Thule, Greenland, for 11 months without any leave, and reindeer's asses are beginning to look pretty good to me. I have one stripe; it's two-thirty in the morning, the temperature is 40 degrees below zero, and my job here is to pump shit out of an aircraft. Now, just exactly what form of punishment did you have in mind?"

* * *

Some people have asked "aren’t you afraid of what might happen if you go public with your criticisms?"

This story illustrates my attitude: there’s nothing that can be done to me that hasn’t been done already. On a regular basis, I’ve been confined to a space smaller than the hut assigned to McCain when he was a POW; spending weeks on end in bed too sick even to follow a TV show is no fun. Nor is throwing up everything you eat for months (or being limited to a single bland food because everything else comes up). I’ve been in constant pain and essentially under house arrest/solitary confinement for years. I’ve been verbally abused and wrongly accused by people who don’t understand the nature of my illness. I’ve been denied appropriate medical care and repeatedly denied the Disability benefits to which I’m legally entitled based on the severity of my symptoms. I’m already under a death sentence: some experts believe CFS patients die 20-25 years earlier than expected, and even if they’re wrong, CFS is a living death: musician Keith Jarrett has called it "Forever Dead Syndrome" because you spend so much time in bed feeling like death warmed over, too sick to do anything. (One of my male correspondents differentiates a "good day" as when he feels up to shaving and not just dragging himself out of bed.)

Just exactly what form of punishment can be worse than what I already endure on a daily basis?

CALLING ALL U.S. CFS GROUPS!

If you are a US-based CFS organization please send your name and
contact information to me at pandorarebecca@aol.com  by October 3,
2008.  I need your organizations name, the president of the
organizations name, email and postal contact info and your website address.

I am collecting the information at the request of the Department of
Health and Human Services.  This will be used to disseminate
information about meetings and as a  tool for inviting patients to
participate in Chronic Fatigue Syndrome Advisory Committee Meetings.

Thanks,

Rebecca Artman

Tuesday, September 23, 2008

Immunological Aspects of CFS

Immunological aspects of chronic fatigue syndrome.
   
Journal: Autoimmun Rev. 2008 Sep 15. [Epub ahead of print]

Authors: Lorusso L, Mikhaylova SV, Capelli E, Ferrari D, Ngonga GK, Ricevuti G.

Affiliation: Department of Neurology, Mellino Mellini Hospital, Chiari, Brescia, Italy.

NLM Citation: PMID: 18801465


Chronic fatigue syndrome (CFS) is a specific clinical condition that characterises unexplained disabling fatigue and a combination of non-specific accompanying symptoms for at least 6 months, in the absence of a medical diagnosis that would otherwise explain the clinical presentation. Other common symptoms include headaches, myalgia, arthralgia, and post-exertional malaise; cognitive difficulties, with impaired memory and concentration; unrefreshing sleep; and mood changes.

Similar disorders have been described for at least two centuries and have been differently named neurasthenia, post-viral fatigue, myalgic encephalomyelitis and chronic mononucleosis. Recent longitudinal studies suggest that some people affected by chronic fatigue syndrome improve with time but that most remain functionally impaired for several years. The estimated worldwide prevalence of CFS is 0.4-1% and it affects over 800,000 people in the United States and approximately 240,000 patients in the UK. No physical examination signs are specific to CFS and no diagnostic tests identify this syndrome. The pathophysiological mechanism of CFS is unclear.

The main hypotheses include altered central nervous system functioning resulting from an abnormal immune response against a common antigen; a neuroendocrine disturbance; cognitive impairment caused by response to infection or other stimuli in sentient people. The current concept is that CFS pathogenesis is a multifactorial condition. Various studies have sought evidence for a disturbance in immunity in people with CFS. An alteration in cytokine profile, a decreased function of natural killer (NK) cells, a presence of autoantibodies and a reduced responses of T cells to mitogens and other specific antigens have been reported.

The observed high level of pro-inflammatory cytokines may explain some of the manifestations such as fatigue and flu-like symptoms and influence NK activity. Abnormal activation of the T lymphocyte subsets and a decrease in antibody-dependent cell-mediated cytotoxicity have been described. An increased number of CD8+ cytotoxic T lymphocytes and CD38 and HLA-DR activation markers have been reported, and a decrease in CD11b expression associated with an increased expression of CD28+ T subsets has been observed.
This review discusses the immunological aspects of CFS and offers an immunological hypothesis for the disease processes.

* * *

Yet, despite all this evidence of a biological, rather than psychiatric, basis for CFS, there are still people who insist that there's nothing physically wrong with us.

And despite the fact that something very similar has been around for hundreds of years, there are still those who insist that it's caused by electromagnetic forces, the stress of modern living, watching too much TV, eating too much processed food, cell phones, or any number of other reasons that could not have been the cause of the identical symptoms 200 years ago.

The only thing that makes sense is the observation that this is caused by an enterovirus, and causes symptoms similar to another known enterovirus (read more at  http://journals.aol.com/kmc528/Lifeasweknowit/entries/2008/02/13/dr.-bruno-parallels-in-cfsfmspolio/1905 ) 

Recovery from CFS: A Book Review

Thanks to Ellen for her expertise!

Barton, A (ed.). Recovery from CFS. 50 personal stories. Milton Keynes: AuthorHouse. Pb. 2008. 349 Pp. Also available as pdf. http://www.alexbarton.co.uk/cfsrecovery-stories.htm  Price varies (based on exchange rate and whether one buys book or pdf).

Let me begin this review by declaring a number of conflicts of interest. Firstly, I have ME. I know what it is and how it differs from the dustbin diagnosis known as CFS. Furthermore, despite trying various treatments, I belong to the 25% who have been ill for more than ten years and have failed to make significant improvements. So in a sense, experience has made me a sceptic. Secondly, I am a psychologist. I therefore know about stress, a common cause of chronic fatigue, and I know about hope, the illusion of control and the placebo response. Thirdly, I am a specialist and researcher. I know how easy it is to count symptoms and diagnose someone with CFS. I’m also aware from the research that few well-defined cases of CFS make a complete recovery (perhaps only 6%), but that a large number will improve over time, regardless of what one does. Given my background, I wanted the answers to two questions in particular. First, did everyone have ME as Ramsay described it and second, did everyone make a complete recovery?

The answer to the first question is no. Many of the descriptions of the illness are limited but I estimate that about 10 of the contributors probably had ME or post viral fatigue. The others included people with fatigue triggered by stress/poor diet and a condition which we used to refer to as ‘nervous breakdown’. They have the telltale symptoms of feeling exhausted all the time, the aches and pains and myriad of other symptoms. They admit to having been busy and/or stressed, then succumbed to every bug, eventually spending virtually all day in bed. Their stories do not describe the diurnal variability, the odd symptoms such as fasciculations and the loss of fine motor control. It took a complete collapse before they began to listen to their body, eat healthily and learn how to reduce stress. One case was typical. A man described a life of stress, living on adrenalin, depression and bulimia and recovered after finding love. When the relationship ended and the symptoms recurred, massage, mediation, CBT, avoiding sugar (always helpful) and Mickel Therapy helped him back to normal. He ended his story by commenting that ‘healing is a choice’. What a pity he had to become so ill before he realised that it’s important to avoid stress and junk food. Other patients described thyroid problems (which can explain the symptoms and therefore should not have resulted in a diagnosis of CFS), sensitivities, hypoglycaemia (also easily remedied), and glandular fever. However, most reported the triad of stress, poor nutrition and a failure to listen to their body’s warnings.

What helped speed their recovery included pacing, identifying sensitivities and avoiding the foods concerned, learning to deal with stress e.g. using meditation, counselling, CBT, the Lightning Process, Reverse or Mickel Therapy, supplements, the blood group diet, more organic food and surprisingly, Dr. David Smith’s highly restrictive regime of pacing, anti-depressants and after stabilisation, graded activity. For some, this programme meant no TV for months, and isolation and depression. I personally know of interventions which don’t require you to tolerate hours of boredom and take less than five years to show a real effect, but I was pleased that the individuals recovered in the end. Less commonly mentioned strategies included yoga, finding God and prayer.

In short, this book is more about CFS than ME. And it’s about dealing with unhealthy lifestyles, brought to an abrupt end by a bout of flu. Not surprisingly, the recovered patients often blame themselves for their illness. One noted that "95% of all chronic illness is caused by internal stress (toxic emotions). It is scientific fact". No, it isn’t. This is an example of the illusion of control. It helps to reassure the worried well that they are not vulnerable to the diseases they are afraid of.

A lady who was a champion canoeist appeared from her description to have become ill after overtraining, but also revealed distress, possibly linked to a perfectionist personality. Reverse Therapy resolved her problems and now she is back racing. Obviously ignorant of the evidence of viral infection and the epidemics, and unfamiliar with the posts on One Click and MEActionUK, she claimed that a "common trigger for many people is the non-expression of emotion". You can probably imagine my reaction to that nugget of wisdom.

One contributor who did have ME is Dr. Clare Fleming. Was she indeed one of the 6% who make a complete recovery? The four pages do not make it clear. Yes, she has full health. No, she hasn’t returned to her previous life. How did she ‘recover’? Sensible diet, stress avoidance, pacing, faith and prayer. It’s what I do (or try to do), but alas, it hasn’t worked for me. However, it shows again that pacing is helpful and that people with ME can make significant improvements, with a multidimensional approach and luck.

The second question I asked myself was how many reported a complete recovery. The answer to that is almost everyone. This offers hope, even for those who were once perfectly well and were struck down by a bug from which we never recovered. Too often, ME and CFS are described in ways which give the impression that almost everyone is likely to be ill for the rest of their lives. And I know that just isn’t true. However, let me be very clear. There is nothing in the book about ME as described by Ramsay. The illness characterised by muscle fatiguability following minimal exertion and the delayed recovery of muscle strength. The disease with the blurred vision, balance problems, loss of fine motor control and intolerance to alcohol. The condition which fluctuates from hour to hour and day to day. For those of us with ME as opposed to CFS, the book is therefore more of academic interest, so we can update ourselves about what is available and what, if anything, we could change or try.

Wearing my specialist’s hat, the main message of the book is to underline the complete uselessness of the CDC criteria for CFS. How many of the doctors diagnosed their patients by checking for the presence of five (common) symptoms? I would not have diagnosed CFS or ME if a patient reported stomach ache after eating. Why waste time and leave the patient to discover a sensitivity to foods? The first thing I ask my patients is to provide me with a list of symptoms, noting what appears to trigger them and what relieves them. When I saw that one patient was tired all the time and only had mild gastrointestinal problems, I referred her straight back with the advice to look for something else. She was later diagnosed with Coeliac’s disease.

Naturally, not everyone takes kindly to those of us who are sceptic about the Lightning Process or Mickel/Reverse therapy. One ex-patient was quite typical in her response. The doctor had "confirmed" that she had ME. As we have no objective test for the illness, I wonder how they were able to confirm the diagnosis? As for CFS, isn’t it a diagnosis of exclusion?

Overall, I think that all groups should buy a copy of this book for their library. From my work as an archivist, I get the impression that the population with CFS/ME is currently dominated by individuals who tried to have it all and who collapsed with a virus under the strain. This will provide them with useful information about the therapeutic options available. However, I suggest that they also include a copy of this review to provide some balance.

Ellen M. Goudsmit PhD CPsychol AFBPsS

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Ellen hits on the big problem – that many people who say "CFS" are talking only about the symptom of "chronic fatigue" and do not mean the post-viral condition more properly called Myalgic Encephalomyelitis.

I believe it was Mark Twain who said "there’s a big difference between lightning and lightning bug", and here, too, there’s a big difference between similar words. If exercise or anti-depressants help, then you don’t have what I have, because both make me sicker. You may have "chronic fatigue", but you do not have Chronic Fatigue Syndrome.

Unfortunately, too many doctors are unaware of the difference.

I’ve also known people who were originally diagnosed with CFS and now tout a gluten-free diet as the cure for CFS. No, a gluten-free diet is the cure for celiac disease, which their doctor misdiagnosed as CFS because he didn’t do all the right tests to make the correct diagnosis.

The biggest diagnostic error that I see in support group is people who come in with a new diagnosis of Something Else and CFS. Under the original diagnostic criteria, that was impossible: the Something Else had to be under control, so that it could no longer be a potential cause of the fatigue, before CFS could be diagnosed. There have always been doctors who were unaware of that requirement, and the new criteria don’t make it clear that CFS is diagnosed by excluding any other possible cause for the fatigue. Originally, you could not get a CFS diagnosis if you’d ever had depression before; then it became not if you’d had depression in the past 5 years; then they started loading up the research with patients who had current depression, in order to prove the false theory that CFS=depression. They couldn’t prove it with real CFS patients,only about half of whom ever develop depression (as a result of the limitations imposed by their disease, just as cancer patients may have concomitant depression as a result of their pain and symptoms), or, conversely, about half of CFS patients never have depression; so, instead of proving that CFS is depression, they set out to prove what is already known, that depression can cause people to feel fatigued, and that depression-related fatigue is aided by exercise and anti-depressants, and, through illogic, to then claim that "chronic fatigue" is the same thing as post-viral Chronic Fatigue Syndrome (previously known as Myalgic Encephalomyelitis).

As far as recovery from CFS, for 12 years after diagnosis, I was a success story: I was back to work full-time. None of my co-workers saw what it took for me to appear normal at work, the many times that I spent every non-working hour resting in order to continue working. So, I know that it is possible to recover from CFS to the extent that you can return to work.

And now I’m one of the failures, too disabled to work even half-time for going on 9 years. When the doctor told me in 1988 that I should only work part-time, financially that was not an option. Maybe if I had a rich husband or a trust fund and could have cut back my hours, I would not have worn myself down to the point that I relapsed. However, some of the blame for remaining in relapse this long has to fall on the doctors, who were told from the first appointment what my prior specialist recommended, and nonetheless insisted on treating me as a depressed divorcee instead of a CFS patient who needed immune system support.

It took years to get the pills that I requested at my first appointment in 2000, and Dr. Murphree tells me that it takes at least one year of recuperation to undo each year of deterioration. A local specialist tells me that I was allowed to deteriorate too far, and therefore will never recuperate fully because too much physical damage occurred while I was being treated as a whiny depressive instead of a neuroimmune patient who was much better off being divorced.

So, yes, as Ellen says, there is hope for CFS patients, but it’s got to be accompanied by competent doctoring. If you’re only sleeping 2 hours a night, your body is not going to have the resources to heal itself. I didn’t start to improve till I got an effective sleeping pill that allowed my immune system to recharge and start to overpower the virus again.

Even if the doctors are right that I will never return to full-time work, I did have an additional decade of contributing to a pension plan and saving independently, for which I’m grateful. I was able to buy a house in that time, so I won’t have to worry about paying rent in my old age, which would have been a real concern if I’d been forced into retirement when I got sick at age 28 and my rent was essentially equal to what I’d get from Disability.

More importantly, that additional time allowed the internet to develop; I could not have done what I do back then, because there would have been no way for me to get the work and return it without paying a healthy person to courier it across town, a charge that would exceed what I am paid myself on many jobs. Theoretically, when I reach full recovery, I should be self-supporting again and can refuse future Disability benefits.