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


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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

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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.