Re: ~*Online WACOC News 2008 January 13*~

Women and Children of CFIDS + Men
WACOC + M

~*A comment or two*~

Welcome to yet another New Year!

All the Online WACOC News - Google Groups Sorted to dates...
http://groups.google.com/groups/search?q=Online+WACOC+News&start=0&scoring=d&hl=en&;

The Alt Med Fibromyalgia (AMF) Newsgroup recently shared news by
Michael Baugh:
Mark London, created and opened the AMF Newsgroup.

Google Keyword: Mark London - sorted to date.
http://groups.google.com/group/alt.med.fibromyalgia/search?hl=en&q=Mark+London&start=0&scoring=d&hl=en&;

Thank you, Mark London for allowing AMF to remain open and
unmoderated.

I've not read the AMF archives before 1997 -- whatever your purpose in
opening AMF, thank you.

Good to hear from you again, Jan. (j.van.roijen @ chello.nl) without
the spaces

~~~~~~~~~~~~~~~~~~~~~~~~~
Send an Email for free membership
~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~
>>>> Help ME Circle <<<<
5 January 2008 <<<<
Editorship : j.van.roijen@xxxxxxxxx
Outgoing mail scanned by Norton AV
~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:

Dear Readers / Friends,

An hour ago I awoke very sick, out of a sleep from
Thursday 19 o'clock till Friday 21 o'clock, with a hard
pounding heart, a terrible head age and shaking
hands. And I'm yearning for sleep again.

Some of you may know, that I suffer from a severe
writing-aphasia because of ME; so at the moment I
can't explain why I couldn't (and can't) handle my
bulletin *Help ME Circle*.

I hope that I will come back in the near future;
probably with a much lower sequence. But my pc
don't work; I have to reinstall XP, which is a hell of a
job.


I just received a very interesting article written by
Margaret Williams, which I can't resist to post.

It is not only important for the UK, but also for
Europe (see for example the fraudulent report of the
Dutch Health Council of The Netherlands - in which
all the bio-medical research is completely omitted -
http://www.gr.nl/pdf.php?ID=1169&p=1 - and of
course the USA.

The CDC is slowly on busy to gear their politics to
the ideas of the patron of the insurance- and
war-industry Simon Wessely. With the "redefined"
Reeves's guidelines the prevalence of *CFS* is from
one day to the other 6- to 10-fold higher than
before.

By mixing more and more psychological disorders
into the FATIGUE-soup, as they already did in 1994
(Fukuda/UNUM-Sharpe) in which the hallmark of
ME/ICD-CFS *post-exertional malaise* was NOT
mandatory - that's the real reason, why findings in
research are so inconsistent - the authentic,
neurological, multi-systemic disease ME and ICD-CFS
(which was of course based on *ME*-outbreaks in
the USA) will completely disappear.



Jan van Roijen

(about five hours later)


````````````````

http://www.meactionuk.org.uk/Dangers_of_NICE_for_MECFS.htm


Permission to Repost



More potential dangers of the UK NICE
Guideline on *CFS/ME* for people with ME/CFS?
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~


Margaret Williams


2nd January 2008


Much has been written about the NICE Guideline on
*CFS/ME* since its release on 22nd August 2007,
mostly noting concern over the Guideline's
recommendations that cognitive behavioural therapy
and graded exercise therapy (CBT/GET) should the
first-line (and only) management for "Chronic Fatigue
Syndrome / Myalgic Encephalomyelitis" or *CFS/ME*.
This concern is unsurprising, given the existence of
numerous published papers which all conclude that
CBT is of limited and non-lasting benefit, and given
that at least four major surveys of over 3,200
patients with ME/CFS have clearly shown GET to be
actively harmful.

*CFS/ME* is different from ME/CFS, the former being
the psychiatric model which has no abnormal signs or
laboratory findings (i.e. chronic somatisation
disorder) proposed and favoured by Wessely School
psychiatrists who advise Government Departments
on *CFS/ME* and who are believed to exert control
over the Medical Research Council's funding agenda,
whilst the latter is a nosological neurological
disorder (classified as such by the World Health
Organisation) which exhibits distinct signs and has
an abundance of abnormal laboratory findings, albeit
no single, definitive test.

It is a matter of on-going concern that the
psychiatric lobby continues to use the terms ME, CFS
and chronic fatigue (CF) as if they were
interchangeable, when such is not the case.

Virtually none of the peer-reviewed, published
biomedical evidence seems to penetrate the
consciousness of these psychiatrists and their
supporters, who continue to dismiss or ignore the
ever-mounting confirmation of abnormal laboratory
investigations now known to exist in ME/CFS. What
is so curious is that there is such an abundance of
easily accessible evidence of abnormal laboratory
findings in ME/CFS, so how -- without losing
credibility -- can the psychiatric lobby keep asserting
that none exists?

Not only is this evidence down-played, its very
existence is repeatedly denied: in an in-press article
to be published in Psychoneuroendocrinology, James
Jones from the Division of Viral and Rickettsial
Diseases at the US Centres for Disease Control also
seems to ignore this body of biomedical evidence,
claiming: "In the absence of overtly abnormal
findings in a person with prolonged duration of
illness, it is common for practitioners to consider a
psychological explanation during clinical evaluation"
(" An extended concept of altered self: Chronic
fatigue and post-infection syndromes". James F
Jones. Doi:10.1016/j.psyneuen.2007.11.007).
For Jones to propose in his essay that:

(i) " the illnesses in question stem from
responses to previous infections and not to ongoing
viral or immunologic factors"

(ii) interoception is responsible for the
illness behaviour exhibited by patients ( " the
sensations and consequences of sickness behaviour
are remembered")

(iii) " persistent illnesses such as CFS are
due to maladaptive biological (interoceptive) signal
recognition"

(iv) " It is of interest that CBT remains an
effective therapy for CFS" and

(v) " Chronic illnesses, such as CFS, in the
absence of evidence of standard mechanisms of
pathogenesis, require new concepts of illness origin"


seems remarkable, given that in 1996 Jones was one
of the authors of a paper that provided laboratory
evidence for an autoimmune component in ME/CFS
(see below).


Royal Society of Medicine meeting to support
the NICE Guideline

It is a matter of acute concern that the Royal Society
of Medicine is to host a meeting on 28th April 2008
on " CFS" (reference to " ME" is omitted, which is in
keeping with the Wessely School's documented
intention to eradicate the term) at which the
psychiatric lobby is to provide most of the speakers;
not only do those speakers include Professor Simon
Wessely himself (famous for his trenchant belief that
ME is a myth and that it does not exist except as an
aberrant belief in the mind of those who think they
suffer from it), but other devout believers in the
psychosocial model of *CFS/ME* such as Professor
Peter White; Dr Anthony Cleare; Professor Rona
Moss-Morris and Professor Matthew Hotopf.

Professor Anthony Pinching is to chair Session Two.
Pinching is widely-known for his belief that in
ME/CFS, " over-investigation can [cause patients] to
seek abnormal test results to validate their illness",
that "fatigue [is] not related to ongoing exertion"
and that " The essence of treatment is activity
management and graded rehabilitation" (as set out
in Prescribers' Journal 2000:40:2:99-196).

Sir Peter Spencer, CEO of the charity Action for ME, is
to speak in Session Three (to be chaired by Professor
Mansel Aylward, formerly Chief Medical Adviser to the
DWP and now funded by the notorious medical
insurance company UNUM). Another speaker is
Professor Chris Dowrick from Liverpool, who, with
Rona Moss-Morris is one of the authors of a study for
which the MRC awarded £459,707, the results of
which were published in the British Journal of
Psychiatry: 2007: December:191:536-542 (" Cluster
randomised controlled trial of training practices in
reattribution for medically unexplained symptoms").
The object of the study was to teach general
practitioners that " reattribution" of symptoms
provides a psychological explanation for medically
unexplained symptoms in disorders such as
*CFS/ME*.



Another danger of the NICE Guideline?

Given the wall-to-wall influence of the Wessely
School lobby and the choice of members of the
Guideline Development Group that produced the
Guideline on *CFS/ME*, it is little wonder that NICE
got things so wrong.

There can be no doubt that NICE ignored the
international evidence that ME/CFS is a biomedical,
not psychiatric, disorder, claiming that studying this
evidence fell outwith its remit. Such a claim is
mystifying, since knowledge of the existing
evidence-base ought surely to be mandatory before
producing a national Guideline on the management
of any disorder, especially given that adherence to
such a Guideline is obligatory throughout the NHS
(and hence for affiliated agencies such as the
Department for Work and Pensions and Social
Services).
Not only has the " evidence-base" upon which NICE
relied for its recommended management
interventions for ME/CFS been exposed as deeply
flawed by virtue of the heterogeneous populations
studied; the methodological inadequacy; the
corrupted data; the high drop-out rates; the
undeniable ineffectiveness of CBT/GET as shown by
the outcomes measures, and the finding that the
claimed benefits may have been illusory ( see: "
Inadequacy of the York (2005) Systematic Review of
the CFS/ME Medical Evidence Base" by Malcolm
Hooper & Horace Reid at
http://www.meactionuk.org.uk/FINAL_on_NICE_for_Gibson.html
) but, just as importantly, the proscribing by NICE of
appropriate testing and its stipulation that any
vitamin or mineral deficiency must not be corrected
by prescription would seem to constitute a real and
even life-threatening danger to people with ME/CFS -
see below.

The proscribing by NICE of testing for Vitamin D
status in patients with ME/CFS

This is particularly problematic in respect of vitamin
D status which, according to clinicians who specialise
in ME/CFS, is known to be frequently deficient in
patients with true ME/CFS. If serum vitamin D levels
are low, one might expect the serum calcium level to
be low and the alkaline phosphate (ATP) level to be
high, but in ME/CFS this seems not to be so. Normal
screening rules simply do not apply in this disorder.

It seems that some doctors still believe that vitamin
D relates just to the health of bones, and that a lack
of vitamin D solely results in osteomalacia or in
osteoporosis (a thinning of the bone predisposing to
multiple fractures).

Whilst this is indeed so, nothing could be further
from the whole truth.

Vitamin D is a misnomer because it is now known
that it is more than just a vitamin - it is a precursor
of a steroid hormone that affects the entire body.
Receptors that respond to vitamin D have been found
in almost every type of human cell from brain to
bone ( see: http://www.mercola.com/ ).

It should be noted that whilst this website (run by Dr
Joseph Mercola MD) is useful and informative in
many ways, it is essentially an advertising website
and contains some information which some clinicians
might challenge.

Vitamin D represents D2 or D3. The former is known
as ergocalciferol and the latter as cholecalciferol.

Whilst vitamin D2 occurs naturally in fungal form
(usually mushroom), medically prescribed vitamin D2
is usually a synthetic form, which according to some
sources has been shown to cause toxicity and to
have greater potential for harm (see " Test Values
and Treatment for Vitamin D Deficiency" at
http://www.mercola.com/ ).

Vitamin D3 is the natural form (i.e. the same
vitamin D that the body makes when exposed to
sunshine).

Vitamin D3 is converted 500% faster than vitamin
D2.

Currently there is much debate as to whether
recommended levels of vitamin D in the diet are
sufficient for people living in northern latitudes, but
over-supplementation is dangerous and can lead to
vomiting, kidney failure and calcification of the
arteries ( see http://www.mercola.com/ ) and it is essential
to consult a doctor specialising in the field.


With regard to supplementation, it is perhaps worth
mentioning that one GP who specialises in ME/CFS
(Dr Sarah Myhill, a leading member of the British
Society for Allergy & Environmental Medicine /
BSAEM) apparently prescribes 0.5 micrograms of
calcitriol (ie. the active form of 1,25 dihydroxyvitamin
D - see below) for patients with depleted vitamin D
levels, which is manufactured by a company called
Teva Ltd (0113 - 238 - 0099).

The Medical Information department of this company
has confirmed that they use wholly synthetic
products in the manufacture and that in addition to
the active (synthetic) ingredient, their calcitriol
contains butylated hydroxyanisol (E321, a " red" or
dangerous substance [BHA/BHT] to which people
with ME/CFS who have hypersensitivities might react
badly: BHA has a benzene / phenol ring and was
developed to protect petroleum from oxidative
gumming, whilst BHT [toluene] is methylbenzene
derived from petroleum; it is used as a solvent in
aircraft fuels); coconut oil; gelatine for the capsule
from a mixture of both porcine and bovine sources;
glycerol; sorbitol; titanium dioxide (E171); quinoline
yellow (E104, another " red" or dangerous substance
and a coal tar dye that has been banned in the US,
in Australia, in Norway and in Japan, but not in the
UK, even though the UK Committee on Toxicity
acknowledged the evidence that it inhibits
cholinesterase activity in in vitro human red blood
cells and plasma, and assays have shown that
quinoline yellow is genotoxic); patent blue (E131,
another " red" coal tar dye and a dangerous
substance). In addition, each capsule contains
refined shellac and black oxide used in the printing
ink.

Ranges of Vitamin D

Vitamin D from the skin and diet is metabolised in
the liver to 25-hydroxyvitamin D (25 (OH)D), known
as calcidiol. It is this that is used to determine
vitamin D status. 25(OH)D is in turn metabolised in
the kidney to its active form of 1,25 dihydroxyvitamin
D (1,25(OH)2D, known as calcitriol).

Optimal range is now considered by world experts to
be 45-50 ng/ml (nanograms per millilitre).
Twenty-five nanograms equates to one International
Unit (the measure in which supplementation is
usually prescribed).

Below 40 ng/ml is considered sub-optimal; below 30
ng/ml is deficient; below 20 ng/ml is now considered
seriously deficient, and below 10 ng/ml places the
patient at real risk, requiring prompt intervention.
Experts recommend that, ideally, the vitamin D level
should never be below 32 ng/ml ( see
http://www.mercola.com/ ).

In ME/CFS, levels as low as 8.3 ng/ml have been
recorded.

The NICE Guideline on *CFS/ME*, however, is
categoric: not only is testing for vitamin D status
proscribed, but the prescribing of vitamin
supplements to rectify any deficiency is specifically
forbidden: the Guideline states that supplements to
correct any vitamin or mineral deficiency " should
not be prescribed for treating the symptoms of the
condition" (see the 52 page version of the
Guideline, page 24, paragraph 1.4.7.2).

Quite how cognitive behavioural therapy and graded
exercise can raise deficient levels of this vital and
life-saving hormone that are found in ME/CFS
patients is not explained by NICE.



Effects of deficiency of Vitamin D

Deficiency results in chronic illnesses, specifically in
symptoms that occur in ME/CFS: deficiency impacts
on muscle function (with muscle pain and weakness)
and is a risk factor for cardiovascular disease (CVD
risk is documented in the ME/CFS literature and was
the subject of keynote lectures at the international
research conference hosted on 25th May 2007 by ME
Research UK in Edinburgh). A deficient vitamin D
status is known to result in high blood pressure, with
the consequent dangers of heart attack or stroke
(see " Vitamin D Deficiency". Michael F Holick MD
PhD; NEJM 2007:357:266-281; see also " Ultraviolet
B and blood pressure". Rolfdieter Krause, Michael
Holick et al. Lancet 1998:352:709-710), and in raised
triglycerides (see " Prevalence of Cardiovascular Risk
Factors and the Serum Levels of 25-Hydroxyvitamin D
in the United States". David Martins et al. Arch
Intern Med: 2007:167:1159-1165).

Vitamin D is an essential part of the endocrine
system (which is well-documented as being disrupted
in ME/CFS) and it controls several of the adrenal
hormones, production of enzymes and the growth of
cells ( http://www.mercola.com/: interview with William B
Grant PhD of the Sunlight, Nutrition and Health
Research Centre, one of the top vitamin D
researchers).

Deficiency of vitamin D has also been implicated in
inflammatory disorders such as ME/CFS is
increasingly being demonstrated to be (see " Higher
serum vitamin D concentrations are associated with
longer leukocyte telomere length in women". T
Spector et al. The American Journal of Clinical
Nutrition, 8th November 2007) and in autoimmune
disorders such as multiple sclerosis, rheumatoid
arthritis and diabetes (see " Vitamin D Deficiency".
Michael Holick MD, PhD: NEJM 2007:357:266-281).


It will be recalled that some experienced ME/CFS
researchers - including Professor Kenny De Meirleir
from Belgium -- now hold ME/CFS to be an
autoimmune disease and that evidence of
autoimmunity was presented at the fifth AACFS
International Research and Clinical Conference held
in 2001 in Seattle. This was a major multi-centre
study looking at the presence of autoantibodies to a
cellular protein expressed primarily in neuronal cells
(MAP2). Initial studies with immunohistochemistry
showed a high percentage of (ME)CFS sera reactive
to centrosomes and that other proteins besides
MAP2 might also be target antigens in (ME)CFS
autoimmunity (see " A multi-centre study of
autoimmunity in (ME)CFS". K Sugiura, A Komaroff, E
Tan et al. AACFS #037).


Previously, a 1996 paper demonstrated the
occurrence of autoantibodies to a conserved
intracellular protein (lamin B1), which provides
laboratory evidence for an autoimmune component in
ME/CFS. The authors found that 52% of patients
with ME/CFS develop autoantibodies to components
of the nuclear envelope (NE), mainly nuclear lamins,
suggesting that in addition to the other documented
disturbances of the immune system, humoral
autoimmunity against polypeptides of the NE is a
prominent immune derangement in ME/CFS. 67% of
ME/CFS patients were positive for NE reactivity
compared with 10% of normal subjects. No patients
with either depression or atopy showed reactivity to
NE proteins. Autoantibodies to NE proteins are
relatively infrequent and most fall into the category
of an unusual connective tissue disease subset
characterised by brain or skin vasculitis (see "
Autoantibodies to Nuclear Envelope Antigens in
Chronic Fatigue Syndrome". K Konstantinov, James
Jones, Eng Tan et al. J Clin Invest
1996:98:8:1888-1896). Many patients with ME/CFS
report a vasculitic-type headache which has become
known as " the ME headache".

The paper concluded that such activation " could be
the result of various triggering agents, such as
infections or environmental toxins". It recommended
that: "Future work should be directed at a better
understanding of the autoimmune response of CFS
patients to other NE antigens".

This important paper has been widely cited in, for
example: American Journal of
Psychiatry:2003:160(2):221-236 (N Afari and D
Buchwald); Clin Vaccine Immunol: 2002:9(4):747-752
(BH Natelson et al); Brain 2001:124(9):1821-1831
(RK Gherardi et al); Rheumatology:
2001:40(7):806-810 (M Nishikai et al) and Journal
Watch:1997:314:4.

It therefore surprising that one of the authors
(James Jones) now seems to regard ME/CFS as
maladaptive interoceptive signal recognition.

Not only is deficient vitamin D implicated in
autoimmune disorders, it is also known to be
implicated in at least 16 different types of cancer,
especially pancreatic, lung, breast, ovarian, prostate
and colon cancers ( see http://www.mercola.com/ ). A
landmark study from the Moores Cancer Centre at the
University of California found that some 600,000
cases of breast and colorectal cancer could be
prevented each year, if only vitamin D3 levels were
increased.

Quite apart from being implicated in pancreatic
cancer, low vitamin D is also known to affect
pancreatic function, and pancreatic dysfunction is
well-documented in ME/CFS.

As well as being implicated in common cancers,
autoimmune diseases and cardiovascular disease,
there is evidence that deficient vitamin D levels are
implicated in infections: vitamin D can increase the
body's production of naturally occurring antimicrobial
peptides which destroy the cell wall of viruses and
bacteria (see www.mercola.com; see also "Vitamin D
Deficiency". Michael F Holick as above) and a
deficiency is also implicated in seizures (see
http://news.bbc.co.uk/1/hi/health/7161458.stm ).

Holick, a world expert on vitamin D, states that 1,25
dihydroxyvitamin D controls more than 200 genes,
including genes responsible for the regulation of
cellular proliferation, differentiation, apoptosis and
angiogenesis, and that it is also a potent
immunomodulator, as well as increasing insulin
production and myocardial contactability. Vitamin D
deficiency is associated with congestive cardiac
failure and blood levels of inflammatory factors
including C-reactive protein and interleukin-10.



Conclusion

Given the immense importance of vitamin D, and
given the fact that people with ME/CFS are known
sometimes to have inordinately low levels, and given
the protean symptomatology arising from a
deficiency, it is disturbing that NICE precludes both
testing for it and the prescribing of supplements to
raise the level if necessary for patients with ME/CFS.

It would seem to be imperative that patients
suffering from ME/CFS take charge of their own
management and either persuade their GP to act
against the NICE Guideline and check their vitamin D
status (which in the UK, may mean sending blood to
a specialist laboratory in Manchester and is
expensive to do) or consult a private clinician
specialising in ME/CFS.

For people within travelling distance of London, one
such clinician is Dr William Weir, whose details are
on the Co-Cure UK Good Doctor List
( http://www.co-cure.org/Good-Doc.htm ). Dr Weir
works part-time as a Consultant Physician in the NHS
but he also runs a private ME/CFS Clinic at 10, Harley
Street, London W1G 9PF (telephone: 0207 - 467 -
8478) and he now routinely checks vitamin D levels
in all his ME/CFS patients.

The Doctors' Laboratory (55 Wimpole Street, London
W1G 8YL, telephone 0207 - 460 - 4800) also carries
out the 25 (OH)D test. A referral from a medical
practitioner is required, but blood can be sent by
post in a serum tube and must arrive within two
days. If sent by post by a medical practitioner, the
cost is £40, but if a patient is referred and attends in
person to have blood taken, there is an additional
service cost of £29.

There are numerous sources of vitamin D3
supplements that do not contain excipients; one
such company is Biocare (telephone 0121 - 433 -
3727), whose supplement contains only lanolin (the
source of D3) in extra virgin olive oil (but some
people with ME/CFS may be unable to tolerate
lanolin). There are different strengths of the
supplement.

A more efficient way of increasing vitamin D levels
may be by using a lamp specifically made for the
purpose. One such lamp is the Xiris. It is made in
Italy and can be obtained from Allergy Matters
(telephone 0208 - 339 - 0029). It comes with full
instructions and costs £225.

Alternatively, provided that the support of clinicians
can be obtained and for those fortunate enough to
have access to an NHS phototherapy unit (within a
Dermatology Department), personalised, carefully
titrated and monitored phototherapy is available on
the NHS.


The NICE Guideline on *CFS/ME*, however, may
prove to be a barrier impossible to surmount.

~~~~~~~~


A bit more news from Jan...


From: jacqui butterworth <jacquibutterworth@xxxxxxxxxxx>

ME PETITION
~~~~~~~~

Hi,

Can you please sign the petition below,

http://petitions.pm.gov.uk/ME-is-real/

Cheers Jacqui

~~~~~~~~

~End of Jan's Messages~

US & UK ME Petitions
http://www.petitiononline.com/MEitis/petition.html
http://petitions.pm.gov.uk/ME-is-real/

GWI Petition
http://www.ipetitions.com/petition/GulfWarillness/index.html

Include Older Americans in Health Care Improvements
http://www.thepetitionsite.com/takeaction/329541347

Beyond Nuclear:
Four Score Organizations Express Opposition to Yucca Mountain Nuclear
Waste Dump

Excerpt:
"Shipping tens of thousands of high-level radioactive waste trucks,
trains, and barges through 45 states and the District of Columbia
risks severe accidents and terrorist attacks," said Kamps of Beyond
Nuclear. "This could release catastrophic amounts of deadly
radioactivity in major population centers, representing potential
Mobile Chernobyls and dirty bombs on wheels rolling past the homes of
millions of Americans," Kamps added.
http://www.commondreams.org/news2008/0111-03.htm

I have not yet read Hillary Johnson's second release of Osler's Web
Inside the Labyrinth of the Chronic Fatigue Syndrome. I took her
first investigation seriously. We discussed via email Chernobyl and
the coincedence and timing of the American outbreaks of M.E here in
the United States of America via the air streams... In Yahoo's
RESACT archives Hillary Johnson shared her knowledge, as did
others.

NCF Medical Discoveries * Including Neurotoxins
http://www.ncf-net.org/Discoveries.htm

The Committee for Justice and Recognition of Myalgic Encephalomyelitis
http://www.geocities.com/tcjrme/

Soft hugs to all who need them,
Diana Saba
Disabled Retired Nurse

Online WACOC News - Google Groups Sorted to dates...
http://groups.google.com/groups/search?q=Online+WACOC+News&start=0&scoring=d&hl=en&;

Welcome to Diana's World 1997- 2008
http://hometown.aol.com/dgsaba/myhomepage/index.html

To The Mountain of Dreams ~ 2006
http://hometown.aol.com/dgsaba/myhomepage/writing.html
.