Saturday, February 20, 2010

5 More Responses to BMJ

(38 in total are up at the time of writing)

http://www.bmj.com/cgi/eletters/340/feb11_1/c738#231497  

Psychiatric measures will not relieve me of a neurological illness
Andrea Pring   (20 February 2010)

Education the Key to
Richard Simpson   (20 February 2010)

Re: Defeatism and Chronic Fatigue
jill cooper   (20 February 2010)

Re: triumphalism not defeatism
Nasim Marie Jafry   (20 February 2010)

Defeatism leads to CBT/GET
Guido den Broeder   (20 February 2010)


=========================

Psychiatric measures will not relieve me of a neurological illness
20 February 2010
    
Andrea Pring,
Writer/Researcher
I cannot work. PL21 0EG



M.E. is an incapacitating, soul-destroying illness that strips away a
sufferer's entire life. Before I became ill, I was a newly qualified
teacher, with a new husband and home. I was beautiful, vibrant and
ambitious. After a succession of viruses I was struck down with ME/CFS and
finally had to retire at the age of 39. I relied on my doctor to do what was
best for me. However, I had no idea at the time that once labelled with the
illness I would no longer be offered further testing or treatment other than
talk therapy and other psychiatric measures.

Psychiatric measures will not relieve me of a neurological illness.

I stagger and slur, bump into things and fall down stairs. I forget where I
live. I struggle to finish sentences. I shake and tremble when I push myself
beyond my limit, which changes by the minute. I suffer with myoclonus,
ataxia, severe low blood pressure and malaise but rarely tiredness.
I lie
unbathed for days until there is break in the symptoms and I can tend to
myself. My hair sits matted and crusted on my head; often left unwashed for
weeks at a time.

I would like to ask the physicians who are reading this a simple question.
How many of you are aware that M.E. is classified as a NEUROLOGICAL illness by the World Health Organisation, and has been since 1969? It was only when
the psychiatric element adopted the illness back in the 1980's that it was
muddied with the artificial construct, CFS.
Now sufferers are thrown in to
the ME/CFS grab-bag along with a conglomerate of other conditions, ranging
from depression, tiredness and burn out to undiagnosed hypothyroidism and
MS. Since further testing is discouraged, physiological proof will rarely be
found. If I were to be given a simple tilt table test then you would see
that my heart and circulation are damaged. But this is one of the very tests
that are discouraged. Why?
POTS is very common in M.E. yet you will rarely
see this mentioned in any of the text books an NHS doctor will read.

I live my life in solitude, not because I choose to but because I have been
forced to by this abhorrent illness, that can be likened to an opprobrious
partner. One who decides when I can wash and dress myself, when I can read a
book, when I can eat, when I can move and if I can use my legs to walk to
the toilet.

All I ask for is appropriate testing and treatment and a chance to continue
where I got off. Nothing more, nothing less.

Competing interests: An ME/CFS sufferer.

=====================

Education the Key to
20 February 2010
    
Richard Simpson,
Charity Trustee
NR59JB



It is easy to see how the "strange conflation" to which Professor Broome
refers would, of course, create a sense of unease in psychiatrists such as
himself and his more prominent peers. Chronic fatigue may not be a terminal
illness but myalgic encephalomyelitis can be.

The media generally do not portray the condition as a "progressive,
paralysing, and commonly fatal illness".[1] Normally the media follow the
propaganda which elements in King's College have continuously promoted since
the late eighties.

If people with ME had only "bed sores, chest infection and malnourishment"
to contend with then the rest of the patient population would not have to
endure the consequences of the stranglehold which psychiatrists have on this
illness – which is at the expense of patients and despite more and more
evidence showing ME to be a serious and progressive biological condition.

Any pessimism exhibited by those with this illness finds its source not in the condition itself but in the ignorance and mendacity of those who
engineer scarce funding from the MRC in order to support the pretence that ME is a somatoform condition, or who publish research based on flawed diagnostic criteria. In fact those suffering the tremendous disability of severe ME are surprisingly optimistic despite the travails of having to deal with prejudice from the some parts of the medical profession and the media.

To use NICE as an example for promoting the use of CBT and GET is risible
and perverse, yet entirely predictable as biomedical research was
ignored.[2] The fact that 90% percent of ME support groups opposed NICE, the
fact that ME patients took NICE to a judicial review in protest at their
guidelines for ME, the fact that the only support that NICE could muster
from those supposedly supporting the ME community were from organisations
that accept government money and who themselves organise "psychosocial
conferences" on ME – all of this illustrates the lack of confidence which
people with ME and their families have for NICE.

And yet NICE is supposedly there to guarantee excellence in clinical
practice.

But we have long since gone past the point where a small section of
psychiatrists influencing NICE can really persuade anyone that CBT and GET
are serious answers to a neurological illness – we just have to wait for the
psychiatrists to catch up or, more likely, be left by the wayside as real
science establishes beyond doubt the pathology of this illness.

Patients and their families are increasingly aware of this policy- based
evidence making which NICE and those who dominate the MRC promote based on
the policies of the last generation which funds only research projects on ME
which promote the psychosocial view of its aetiology [3].

The problem with the treatment of ME in the UK is essentially, as Professor
Broome's posting demonstrates, down to poor education about the condition
and this stems from the education of medical students and continues, for
many doctors, through their years of practice. It is also heavily influenced
by biased research.

If one is fed a constant diet of biased research then one can expect little
more than ignorance to exist.

But there is hope as biomedical research is progressing as shown by the
latest research by the Whittemore-Peterson Institute/National Cancer
Institute/Cleaveland Clinic with the discovery of a link between the XMRV
retrovirus and ME [4]. Hardly just bed sores and chest pains!

There really is a great deal of catching up to do for some sections of the
medical profession with regard to ME.[5]

Perhaps the editor of the BMJ could be persuaded to attend a biomedical
research conference on ME and write an informative, unbiased article about
it for the readers of this journal.

Ultimately, education really is a progressive discovery of one's own
ignorance.

[1] 1. Santhouse AM, Hotopf M, David AS. Chronic Fatigue Syndrome. BMJ
2010;340:c738

[2] National Institute for Health and Clinical Excellence. NICE clinical
guideline 53: Chronic fatigue syndrome/myalgic encephalomyelitis (or
encephalopathy). 2007. www.nice.org.uk/CG53 .

[3] Magical Medicine: How to Make a Disease Disappear by Professor Malcolm
Hooper (http://www.investinme.org/Article400%20Magical%20Medicine.htm )

[4] Vincent C. Lombardi, Francis W. Ruscetti, Jaydip Das Gupta, Max A.
Pfost, Kathryn S. Hagen, Daniel L. Peterson, Sandra K. Ruscetti, Rachel K.
Bagni, Cari Petrow-Sadowski, Bert Gold, Michael Dean, Robert H. Silverman,
and Judy A. Mikovits. Science [DOI: 10.1126/science.1179052]

[5]
http://www.investinme.org/Documents/Journals/Journal%20of%20IiME%20Vol%203%20Issue%201%20Screen.pdf  

Competing interests: None declared

====================

Re: Defeatism and Chronic Fatigue
20 February 2010
    
jill cooper,
teacher
cv214hl



With respect, in response to Alistair C Young's comments:

1. I am glad if many clinicians feel a sense of defeat with regard to their
interpretation of Chronic Fatigue Syndrome.

2. I do not feel that there has been 'bullying' nor 'badgering' by people
who want biomedical research into this range of diseases. (Lay nor medical).


3. If there is a 'powerful lobby' then that is out of necessity.

4. If that poweful lobby 'will not accept any role for psychological factors
in the cause of this disorder' it is because we are not talking about a
single disorder.

Certainly there will be some people with the diagnosis who have
psychological illnesses.
              
5. We are not likely to discover physical causes if we refuse to look for any.

6. Many 'unfortunate victims' have had the opportunity to experience the
'benefits of the treatments outlined by Santhouse and his colleagues' but
many of these victims are still unwell. (If you recall, some of them are
dead).

7. As we are not talking about a single disease, we are unlikely to find a
standard medical treatment.

Once again, I stress that my comment is 'with respect'.

Competing interests: None declared


======================

Re: triumphalism not defeatism
20 February 2010
    
Nasim Marie Jafry,
author of 'The State of Me', ME for 27 years
EH10 4HS



Exactly, there is no defeatism: we want to get better, we are desperate to
get better. Thankfully, there are researchers digging down to the truth -
the biomedical truth - slowly, but surely.

But that truth is still not being acknowledged by a core of
medics/psychiatrists.

The above article could be re-titled: Psychiatrists' insistence on CBT/GET
is undermining the progress of biomedical research.

It is no wonder some in the ME community are labelled as militants. We are
angry and exhausted and baffled at not being listened to.
When will it end?
What does it take?

Competing interests: None declared


==============

Defeatism leads to CBT/GET
20 February 2010
    
Guido den Broeder,
Chairman of the ME/CVS Vereniging
Igor Stravinskisingel 50, 3069 MA, Rotterdam, the Netherlands


Santhouse, Hotopf and David (SHD) claim that defeatism towards myalgic
encephalomyelitis (ME) is undermining evidence that the illness can be
treated. It cannot be stressed strongly enough that they are right - except
that it's the authors' defeatism that I would like comment on.

It is a sign of defeat to diagnose a postviral disorder of the brain,
involving disfunction of various bodily systems (Carruthers, 2003), as
'chronic fatigue'. It is a sign of defeat to claim that it should be
classified as neurasthenia or somatization, to offer behavioural therapies
as the only remedy, and to keep insisting on this even after they have been
proven not to work. Exactly this attitude displayed here by SHD is
responsible for blocking research and guidance into proper diagnostics and
treatment for ME.

ME can be treated - only not by CBT/GET. Research by NIVEL (De Veer, 2008)
shows that CBT, GET as well as antidepressants offer, of all commonly
applied treatments, by far the worst results.
Even NICE, that produced a
guideline on CFS that many professionals refuse to support (NICE, 2007),
does not recommend CBT or GET for the severely ill as the authors, in their
defeat, appear to do.

Diets, supplements, bedrest, pacing and painkillers, on the other hand, are
among the treatments that are known to, sometimes significantly, improve the
ME patient's quality of life (De Veer, 2008). But that is just the
beginning: they do not cure.

There is no reason why ME should not be curable. We know most of what's
wrong - in fact, we knew that already before the psychiatrists muddied the
scene (see e.g. Hyde, 1992) - so all it takes is good research, which of
course needs funding. The millions that are currently wasted on CBT/GET
would do nicely.

So many people need not have died, or lead a crippled life.

Guido den Broeder

Chairman of the ME/CVS Vereniging (The Netherlands)

www.me-cvsvereniging.nl  

----

Carruthers BM, Jain AK, DeMeirleir KL, Peterson DL, Klimas NG, Lerner AM,
Bested AC, Flor-Henry P, Joshi P, Powles ACP, Sherkey JA, Van de Sande MI
(2003), "Myalgic Encephalomyelitis / Chronic Fatigue Syndrome : Clinical
Working case Definition, Diagnostic and Treatment Protocols", Journal of
Chronic Fatigue Syndrome, Vol. 11

De Veer AJE, Francke AL (2008), "Zorg voor ME/CVS-patiënten. Ervaringen van
de achterban van patiëntenorganisaties met de Gezondheidszorg", NIVEL,
Utrecht, December ("Care for ME/CFS patients. Experiences of the supporters
of patient organizations with health care.")

Hyde BM (ed.) (1992), "The Clinical and Scientific Basis of Myalgic
Encephalomyelitis / Chronic Fatigue Syndrome", Nightingale Research
Foundation, Ottawa, Canada with editorial and conceptual advice from Levine
P and Goldstein J., 724+23p, ISBN 0-9695662-0-4

National Institute for Health and Clinical Excellence (2007), "Chronic
fatigue syndrome / Myalgic encephalomyelitis (or encephalopathy); diagnosis
and management", London, August

Competing interests: None declared

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