Letter to the UK MS Society re LDNNow
BigArtie
RE: LDNNow
I am in receipt of a letter dated 16th September that Judi Rhys from MS
Society Cymru wrote to Mr MacGowan of the Llanelli Star newspaper. Ms Rhys
expresses your charity�s concern with the media coverage LDNNow received in
this newspaper with regards to the awareness of LDN to their readership
about the most cost effective, safe drug, on the market for all autoimmune
diseases � Low Dose Naltrexone (LDN). It also appears your charity is
somewhat disturbed about our e-petition to 10 Downing Street for trials for
LDN.
As Chairperson of LDNNow I am somewhat puzzled at the time your charity took
to write a four page statement about LDNNow�s e-petition, and distributing
this to the press and Andrew R T Davies AM.
Through your contacting the media, we have now been given the opportunity to
express our opinion on the MS Society and that we have done. This was
published yesterday in the Llanelli Star �The Battle of LDN Politics�.
Thank you for giving us this opportunity to clarify a few things.
This drug is saving peoples lives and is known to slow down progression and
in many cases halt it. 100,000 people around the world cannot be wrong and
as a �charity� for people suffering from MS, you should be supporting people�s
choices of treatment and if we at LDNNow find Low Dose Naltrexone effective
in our various diseases, then yes we will spread the word.
Also, because LDN has been around now for 24 years, if it had been a failure
we would surely know it by now! It is its survival, and its widely
increasing use, that has verified both its safety and its effectiveness.
With regards to effectiveness, there has been widespread use of LDN by
hundreds of doctors in thousands of patients within the last 24 years. The
doctors using it know it works; the patients using it know it works, and
this is why there is such an increasing demand for this method. Only the MS
Society remains in doubt due to the �lack of scientific evidence�. If this
is so, why have the MS Society chosen not to attempt to verify this simple
method decades ago?
Let�s talk about the one disease where we all know someone who suffers
from � cancer. When patients are seen to recover from devastating cancers
with nothing more than LDN, and possibly a few dietary or nutritional
changes, it must be considered that the method is having a beneficial
effect. This is surely a verification that trials are needed. It is the
purpose of the petition to establish and initiate these trials.
As you are aware, Dr Chris Steele MBE has offered his help and support
behind our LDNNow campaign. It appears you have studied the LDNNow website
quite thoroughly so I trust you have seen Dr Chris�s video on LDN and urging
people to sign our petition to 10 Downing Street.
Incase you are not aware, both Dr Bob Lawrence (who introduced LDN into the
UK in 2000) and Dr Tom Gilhooly (Essential Health Clinics in Glasgow)
applied for funding to the MS Society but it got turned down. Nobody at the
MS Society in the UK at the time supported their application or they would
have worked with both these Doctors so that their application ticked all
your boxes. You have also since revised your sources for submissions to
academic institutions only. Could you advise when this change took place?
So we at LDNNow feel without political intervention, we will probably never
see this low cost effective out of patent drug trialled which is not
acceptable when people should be given the option of taking a drug that we
know (and there is clinical evidence supporting this) that slows down the
progression of their disease. There is also a huge demand for LDN in the UK
and therefore we will continue campaigning to get this drug available on the
NHS.
We firmly believe in �first do no harm�. I can�t quite understand how you
could bring up Tysabri in the LDNNow statement about our petition for trials
for LDN. Tysabri has been trialled and 15 deaths reported from severe brain
damage and liver failure. I do understand your charity is funded by the
pharmaceutical companies and perhaps this has a lot to answer for.
This is no time for messing about with peoples lives and surely you know as
well as I do that the reason people suffer from this terrible autoimmune
disease is due to a dysfunctional immune system.
The theory is that you can modulate the immune system by boosting the
endorphins. Endorphins are what regulate the immune system. Endorphins are
understood to regulate the immune system. When you raise the endorphin
levels, immune function is restored and disease progression starts to slow
and can come to a complete halt in many. LDN raises endorphin levels.
Essentially, taking LDN �tricks� the body into producing higher levels of
endorphins � and the increase in endorphins helps our immune systems
function better in numerous ways, beginning with feeling better, then
reducing inflammation, which in turn reduces cell damage and pain etc.
Researchers have isolated T-cells and found that many of the receptors on
the cells of the immune system � the B-cells, T-cells, thymus cells and so
forth � are endorphin receptors. Over 90% of the receptors of immune cells
in our bodies carry endorphin receptors. These cells are an
endorphin-coding apparatus. Here�s another way of saying it: the endorphins
are the fuel for the proper functioning of our immune system. Without
endorphins, the B-cells don�t work properly, the many T-cells don�t work
properly, populations of important T cells collapse and eventually our
immune system starts misbehaving. This is scientifically verified in
research.
One point you�re missing and this is very relevant, is that LDNNow and the
petition we have put up to 10 Downing Street is not solely focussed on MS.
This is extremely clear in our petition.
In fact, your statement and letter to the Llanelli Star could almost appear
as a �smear campaign� on LDNNow and comes across somewhat as ridiculing
Andrew Barnett who suffers from Secondary Progressive MS. If anyone from
LDNNow wants to go to their local press and do a story on a drug they find
most beneficial to their disease, that they, along with thousands of others
(who are so angry that they didn�t find out about it sooner and was never
offered it when the medical profession are aware of it), then I have nothing
but great admiration for anyone doing this.
I am thankful to the Llanelli Star (amongst other newspapers who are
supporting our campaign) to raise awareness of LDN. Not once has any member
of our group claimed LDN is a wonder drug or miracle cure (although to some
people taking LDN it is). Please find the article in July that started this
LDNNow campaign (Western Telgraph) which clearly states it is not a wonder
drug or miracle cure etc. I attach the link for your convenience
http://www.westerntelegraph.co.uk/news/4474678.Couple_campaign_for_detailed_drug_trials/?ref=mr
On closing, I find this totally unacceptable behaviour from the MS Society
but would like to remind you again, that LDNNow or the petition to 10
Downing Street is not just focussed on Multiple Sclerosis.
Never doubt that a small group of thoughtful, committed citizens can change
the world; indeed, it's the only thing that ever has (Margaret Mead).
Regards,
Jayne Crocker
Chairperson, LDNNow
www.ldnnow.com <- click on petition link to support LDN as front line
treatment
Cc Andrew Lansley (shadow health minister)
Stephen Crabb (MP, Conservative Party Whip)
Nia Griffiths (MP, Labour � Llanelli)
Dr Chris Steele MBE (ITV This Morning)
Dr Bob Lawrence MRCS LRCP
Dr Tom Gilhooly MBChB MRCGP
Mr Andrew Barnett MSc (author of the e-petition)
Madeleine Brindley (Western Mail)
Shaun Greenie (Llanelli Star)
Becky Hotchins (Western Telegraph)