Invest in ME -Letter to The Lancet

[Guest guest]

Invest in ME Statement

Ignorance is not an option.

Letter to the Editor of the Lancet

The Editor of the Lancet recently participated in an

Australian radio broadcast which included proponents

of the PACE Trials.

The comments by Dr. Horton indicate a lack of

knowledge about this disease and about the

biomedical research which has taken place and is

continuing, even though it receives none of the

funding which psychiatrists have received to promote

their flawed research.

Invest in ME responded.

We publish this letter to allow as much open debate

as possible and to show that there is a possibility to

change things for the better for people with ME and

their families - if the will and the education is

available.

Ignorance is not an option.

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Letter to Editor of the Lancet

19th April 2011

To: Dr. Horton Editor The Lancet

Dear Dr. Horton,

Recently you have commented about the PACE trials.

You have described patient advocates as a very

damaging group of individuals, who have distorted

the debate.

Invest in ME is a UK charity which seeks to educate

about Myalgic Encephalomyelitis (ME/CFS).

We are advocates of better education regarding

ME/CFS.

We are organising and hosting our 6th Invest in ME

International ME/CFS Conference at One Birdcage

Walk, Westminster, London, on 20th May 2011. The

conference has been given full CPD accreditation.

We would not wish the editor or staff of the Lancet

to be criticised for holding unhelpful illness beliefs

with regard to ME/CFS.

So, in the spirit of open debate, the chairman and

trustees of Invest in ME respectfully invite you to

attend the conference on 20th May as guest of

Invest in ME.

The conference presents the biomedical research

which is being performed by world-class scientists

from USA and Europe - research which the Lancet is

seemingly unaware of, in that it never seems to

mention any of it.

At this year's conference you will have the

opportunity of hearing from world-renowned experts

on ME/CFS including one of the most experienced

pediatricians in the world discussing a 25-year

follow-up of ME/CFS patients; a former Stanford

doctor discussing translational research into ME/CFS;

the clinical and research experiences of an infectious

diseases specialist concerning enteroviral research in

ME/CFS; the proteomics of cerebrospinal fluid in

ME/CFS; the possibilities in the UK for genome

sequencing, immunological and virological analysis of

ME/CFS; B-cell depletion therapy and clinical trials of

Rituximab in ME/CFS; the clinical experiences of

diagnosis, treatments and trials in ME/CFS from

Europe's most experienced ME/CFS researcher; and

the latest news of XMRV research and ME/CFS,

including results from Germany.

It ought to be important for the Lancet to be

acquainted with current biomedical research into this

disease especially as the Lancet has not

distinguished itself in being objective in its reporting

of ME/CFS.

Apart from the conference on 20th May we will also

be organising and hosting a pre-conference evening

presentation in Westminster on 19th May. The

presentation is entitled *Science, Politics .... and

ME* and will have respected scientist, academic and

politician Dr Ian Gibson and the respected US

journalist Hillary presenting transatlantic

views of the influence of politics on research, media

and healthcare.

You are cordially invited to that evening as guest of

Invest in ME. In addition to the above Invest in ME

would also like to facilitate a meeting for you with

some of the researchers who will be presenting at

the conference. We can organise this on the 19th

May in London at a venue arranged by the charity.

Here you would be able to discuss with scientists

who have and are performing biomedical research

into ME/CFS and research upon which the Lancet

really ought to be reporting.

We understand that, having published the PACE

trials document - a study which most ME/CFS patient

organisations view as deeply flawed and a complete

waste of money, it is difficult for the Lancet to admit

that this document is of no value in treating ME/CFS.

However, there is no excuse for ignorance with

regard to any disease - especially ME/CFS which has

been so maligned by misinformation, lack of funding

and vested interests employed by the insurance

industry.

The Lancet has a duty to report honestly and fairly.

We note from your web site that the founder of the

Lancet, Wakley, founded The Lancet with

the statement that " A lancet can be an arched

window to let in the light or it can be a sharp

surgical instrument to cut out the dross and I intend

to use it in both senses " .

Patients suffering from this awful disease certainly

need a campaign to cut out the dross which we see

only too clearly in the way ME/CFS is presented by

false research such as the PACE trials - and

healthcare staff really do need to see the light.

We welcome you to our conference events in London

in May to listen to the biomedical research and

demonstrate whether the Lancet still maintains that

it is a reformist medical newspaper known for its

campaigns.

We look forward to welcoming you at the conference

in May,

Yours sincerely,

The Chairman and Trustees

Invest in ME

UK Charity Nr 1114035

Burst Our Bubble

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www.meawarenessmonth.org

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