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2010 |
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A Proposal for a UK Centre of Excellence Base
for ME
A summary of
information relating to a proposal which has been formulated by an Invest in ME
steering group which has been formed to instigate the setting up of this
facility.
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American Journal of Biochemistry and Biotechnology
Invest in ME received an invitation
from the
American Journal of Biochemistry and
Biotechnology for publication of
all accepted articles presented at
5th Invest in ME International ME/CFS Conference 2010
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IiME Decline Invitation to Join BACME
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2010 Conference DVD Distributed
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(bio)psychosocial model of ME Destroyed
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The Journal of IiME
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Research
by Dr Martin Lerner
Subset-directed antiviral treatment of 142
herpesvirus patients with chronic fatigue syndrome - research by Dr.
Martin Lerner et al. Dr Lerner presented at the IiME 2008
International ME/CFS Conference -
http://www.investinme.org/IiME%20International%20ME%20Conference%202008%20-%20DVD%20Orders.htm.
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European ME Alliance (EMEA) - Dr. David Bell Euro Tour
The European ME Alliance member groups
are arranging a Euro Tour by Dr. David Bell. |
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ME Awareness Day Letter to Chief Medical Officer
For ME Awareness Month 2010 please
support Invest in ME and biomedical research into ME. Buy Invest in ME wrist bands for Biomedical Research |
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WPI Response to XMRV Criticisms
WPI Response to XMRV criticisms
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In support of the WPI - Dr David Bell appeals for funding for WPI
Dr David Bell's warning about the
dangers from the establishment in employing known tactics to hamper the current work
on XMRV by the WPI. |
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ME Awareness Month 2010 - Support ME Awareness
For ME Awareness Month 2010 please
support Invest in ME and biomedical research into ME. Buy Invest in ME wrist bands for Biomedical Research |
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New Zealand Follows With Ban on Blood Donation
New Zealand is to follow the Canada Blood Service in banning ME patients from giving blood.
Australia also has banned donations from ME patients. |
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European ME Alliance (EMEA) calls for Europe-wide Ban on Blood Donation
The European ME Alliance members groups from
across Europe have called for an immediate prohibition of blood donations from
people with ME due to the risk of contamination of blood supplies |
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IiME Letter to General Medical Council Regarding Myhill Case
Invest in ME have written to the General medical
Council to urge them to be consistent in their approach to ME/CFS |
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Invest in ME Submission to APA Regarding DSM-V
Draft Proposal
Invest in ME Submission to APA DSM-V Draft
Proposals |
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Alison Hunter Memorial Foundation Becomes Sponsor of Invest in ME
Conference 2010
The
Alison
Hunter Memorial Foundation become a sponsor of 5th IiME Conference |
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Dr. Sarah Myhill Case with General Medical Council
The GMC are considering withdrawing the licence to practise from
Dr Sarah
Myhill |
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New Letter to UK Secretary of State for Health
Invest in ME have followed up our letter to the Labour Minister for
Health, Andy Burnham, (for which we have received no reply) with a
reminder letter and questions on whether the UK government will
consider banning blood donations from people with ME following
Canada's decision to do that. |
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Canada Bands Blood Donations from People With
ME
Canada Blood Service has decided to prohibit people who have or have
had ME from donating blood -
read more
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CMO - A Testament to Failure
Above all others the office of the Chief Medical Officer in the
UK ought to be there to protect the public.
It says just this on the Department of Health web site -
click here |
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March/April Newsletter Distributed
Click here for the
March/April 2010 newsletter |
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Complaint Made to UK Medical Research Council
A letter from Professor Malcolm Hooper Regarding
the PACE
Trials sent to
the UK Medical Research Council -
click here |
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Letter
from
America
Dr Mary Schweitzer has provided this commentary on
the XMRV research -click here |
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Invest in ME Letter to Secretary
of State for Health
Following comments by Ann Keen MP (under-Secretary of
State for Health) about ME Invest in ME have asked questions of the minister
regarding ME and blood donations.
Click here |
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XMRV Research by WPI - Invest in
ME Contribute to WPI UK Research
XMRV Research Project - Redirection of Funding. Invest in
ME to fund WPI research. |
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EMEA Invite Health Ministers/CMOs to London
The European ME Alliance (EMEA) invites Health ministers and CMOs in Europe to a
London meeting.
Click here |
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IiME Comment on XMRV Research - Look to the
End
The ground-breaking
research performed by WPI/NCI/Cleveland Clinic has had its share of
detractors - especially from some with vested interests in stopping
biomedical research into ME or maintaining their status.
IiME comment on XMRV research.
Click here |
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IiME Supporter Arranges Adjournment Debate
A supporter of Invest
in ME has provided all the information about ME for her MP's
Adjournment debate in UK parliament.
Click here |
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Letter to NICE
A
Press Release from Professor Malcolm Hooper Regarding
the PACE
Trials and a complaint against
the UK Medical Research Council -
click here |
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February Newsletter Distributed
Click here for the
February 2010 newsletter |
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Switzerland Joins European ME Alliance
The latest country to
join the European ME Alliance is Switzerland.
This and news of EMEA biomedical research conferences -
click here |
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Complaint Against UK Medical Research Council
A
Press Release from Professor Malcolm Hooper Regarding
the PACE
Trials and a complaint against
the UK Medical Research Council -
click here |
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Wheelchair Use and Attitudes
From our Autumn 2008 Journal of IiME -
an interesting article on wheelchair attitudes and a comparison with
a UK CNCC clinic's view of aids for people with ME -
click here |
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Interstitial cystitis and Chronic Fatigue Syndrome
ME/CFS is not the only illness which is
being forced into
a re-classification as a single somatoform disorder. |
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WPI Announce Availability of Updated XMRV Testing
Further information in XMRV testing as
biomedical research continues to progress to bring discovery, knowledge, and effective treatments to patients with illnesses that are caused by acquired dysregulation of the immune system and the nervous system, often results in lifelong disease and disability. |
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More evidence of inflammation in (ME)CFS
Unequivocal proof of inflammation in ME/CFS - read
more |
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Why Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) may kill you:
Disorders in the inflammatory and oxidative and nitrosative stress (IO&NS) pathways may explain cardiovascular disorders in ME/CFS |
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A STATEMENT by INVEST in ME - regarding the BBC NEWS ARTICLE "Research finds no proof that a virus is the cause of ME"
"Much more research is underway and the results from the first XMRV replication trials such as these from ICL prove little." |
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Documented Involvement of Viruses in ME/CFSIt is notable (and
quite incomprehensible) that the PACE Trial Investigators did not include
virological testing of participants in their trial that is based on their
theory that patients with “CFS/ME” are merely deconditioned.
Read this very interesting, thought-provoking and disturbing article about
the documented involvement of viruses in ME/CFS. |
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2009 |
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Can the MRC PACE Trial be justified?
The House of Commons Select Committee received seven
representations about the MRC’s refusal to heed the biomedical
evidence about ME/CFS. MPs found evidence of poor planning and
of focusing on “politically-driven” projects that have diverted
money away from top-quality proposals -
read more |
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IiME Fund Raising for XMRV Research Project
IiME are fund-raising for Dr
Jonathan Kerr's proposed project to research XMRV -
read more here |
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NICE Judicial Review Statement of Concern
over CBT/GET
For the NICE Judicial Review
many submissions were made expressing concern about the
recommendation by NICE that the primary management intervention
for ME/CFS should be Cognitive Behavioural Therapy and Graded
Exercise Therapy -
read more |
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UK Medical Research Council - Secret Files on ME
It is an established fact that the MRC has a secret file on ME
that contains records and correspondence since at least 1988 -
click here |
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New Invest in ME Letter to CMO
Invest in ME repeat questions to CMO regarding
XMRV - click here |
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The Proof is Out There
Dr Johnathan Kerr's new research
on Microbial infections in eight genomic subtypes in ME -
click here |
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Updates to ME & My MP Election 2010 Campaign
The Conservative Shadow Minister for Health responds to
Invest in ME's letter. And a voter's view of local ME services.
click here |
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CMO Declines to Attend IiME's 5th International ME/CFS Conference
The CMO has again declined the invitation from Invest in ME
to open the International ME/CFS Conference 2010.
click here |
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Misdiagnosis/Missed Diagnoses
From our
November 2009 newsletter -
misdiagnosis
and missed diagnoses are the end products of a system which
has failed to tackle this illness.
This story from Christine Wrightson is testament to the
failings of a generation of policy-based evidence making
from the UK government and the UK Medical Research Council.
click here |
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The Role of Viruses in ME/CFS
"There is increasing awareness that the dysregulated immune
system that is a hall-mark of ME/CFS allows multiple latent
viruses and microbial agents to become reactivated. Moreover, recent research has shown that even viruses which were
hitherto believed not to persist after an acute infectious
episode are capable of long-term viral persistence."
by Margaret Williams -
click here |
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Contribute to the WPI Research Database
The Whittemore Peterson Institute for Neuro Immune Disease is compiling a research database for those with ME.
If you would like to be a part of it, or to be considered for participation in current or upcoming clinical trials, you can fill out the form.
Use the link below or visit the WPI site at www.wpinstitute.org.
Link to the WPI Research Questionnaire -
http://www.wpinstitute.org/patient/volunteer_form.html
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Viral Immune Pathology Diagnostics Introduces New Test for XMRV Patients and Clinicians
Viral Immune Pathology Diagnostics Introduces New Test for XMRV Patients and
Clinicians
-Net proceeds from test dedicated to further WPI research-
click here |
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November 2009 Newsletter Published
click here |
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Belgium rejects CBT and GET for ME
Belgium rejects CBT/GET -
click here |
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CBT and GET - Ineffective for ME
A study concludes that CBT and GET
are ineffective for treating ME -
click here |
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5th Invest in ME International ME/CFS Conference 2010
Invest in ME announce the provisional date for
the 2010 conference -
click here |
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New Letter to
CMO
Invest in ME write again to the CMO on XMRV and suggest ME is
Notifiable Illness -
click here
See other correspondence with CMO -
click here |
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Dr Martin Lerner -
Press Release
Dr. Martin Lerner has issued a call to
action for use of a common language in ME evaluation and treatment |
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The Proof is Out There
The WPI XMRV research - Retrovirus Linked to
ME -
click here
Statement by Invest in ME
on the new XMRV research by the WPI - click
here
EMEA
Statement
EMEA statement on XMRV research
- click here. |
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ME and My MP
With a year to go before an election in the UK now is an opportune time to
begin detailing the responses from the different political parties -
click here. |
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Recent Fundraising Events
A new page on fundraising and awareness events |
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International ME/CFS Conference 2009 DVD
The conference DVD now being distributed.
Conference review -
click here |
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H1N1 and ME
Information on H1N1 flu virus
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Letter to
Prime Minister
The e-petition to the Prime Minister from people with
ME asking the government to attend the IiME London Conference in May; the
response from the PM and our letter to the PM -
click here
See the latest government response -
click here
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The Proof is Out There
Dr John Chia's new research
on enteroviruses and ME -
click here |
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International
ME/CFS Conference 2009
See conference review -
click here |
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Open Letter to
CMO
An Open Letter to the Chief Medical
Officer in UK from Invest in ME
click here
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Journal of IiME
- Volume 3 Issue 1
The conference version of the Journal is available -
click here |
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IiME Response to APPG
The latest IiME response to the proposed APPG Inquiry into NHS Services
Terms of Reference
click here
for APPG page |
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IiME Response to CDC 5-year Plan
Invest in ME have responded to the recently published 5-year plan for CFS
(ME) from the USA Centres for Disease Control -
click here
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MEDICALLY UNEXPLAINED SYMPTOMS AND ME
MUS and
ME
From our Autumn 2008 Journal of IiME - Reasons why ME does not belong
to the Medically Unexplained Symptoms category -
click here |
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NICE -What's Next?
IiME comment on the recent Judicial review of NICE brought by ME patients.
click here
Calendar of the Chronically-Ill
- click here |
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Lost Voices - From a Hidden Illness 
Order Lost Voices - click here |
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IiME Biomedical Research Fund Established
From our
January Newsletter -
we plan to establish a biomedical research fund for ME
-
click here |
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ME/CFS as a Mitochondrial Disease
From our Journal of IiME Vol 2
Issue 1- mitochondrial disease and the type of secondary mitochondrial disease ME/CFS patients experience - the inability to sustain activity
-
click here |
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2008 |
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Past
International ME/CFS
Conferences
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Caring for
Seriously Ill ME Patients
From our Journal of IiME Vol 2 Issue 1- a survey from Norway helping explain
how to manage severely affected people with ME - now as a web page -
click here |
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Lynn Gilderdale |
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European ME Alliance Launched
IiME are members of the new European
ME Alliance
click here
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What is ME - CFS
Revisit an introduction for
lawyers, clinicians and the media
- click here
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IiME &
Forward ME
IiME's input to the Forward-ME
meetings -
click here
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Essential investigations for people with ME
Comments
on
“Identification
and treatment of symptoms associated with inflammation in medically
ill patients” |
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MRC
Statement on ME
From our September newsletter a statement from the MRC on their policy
toward ME -
click here
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IiME - "Critical of Lack of Leadership from CMO"
From our June/July newsletter -
click here |
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Caring for
Seriously Ill ME Patients
From our Journal of IiME Vol 2 Issue 1- a survey from Norway helping explain
how to manage severely affected people with ME -
click here |
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Sub Grouping & Treatments for
ME/CFS
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Topic of the Week -
Enteroviruses
A brief introduction to this
topic
- click here
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IiME Letter to APPG
IiME have requested that the chair of the APPG Meeting on 22nd January put
these questions to Mrs. Ann Keen MP -
click
here |
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2007 |
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facebook
and IiME
Join our facebook group -
click
here
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Letter
from
America
Pat Fero's update on the WPI-click here |
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ME Standards
- ME Clinics
From our August newsletter - a start on establishing basic protocols and standards for ME - what we need and what we
don't need from ME
Clinics.
click here. |
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Statistics on DLA and IB for PwME
From the August newsletter
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Vaccinations, Antibiotics and ME
One of the less
publicised, yet more and more topical, subjects nowadays coming to
the fore is the role of vaccines and antibiotics in development/cause of myalgic
encephalomyelitis.
Click here |
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CBT, GET And Human Rights:
From the IiME Response to the NICE Draft
Guidelines
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Dr Byron Hyde's
Nightingale ME Definition
Produced by Dr. Hyde for the Gibson Inquiry and the Invest in ME - ME/CFS Conference 2007.
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Breakthrough in
Norway
Norwegian government announces new policy to ME
- here.
Read of Vaccines and ME link in Norway - here. |
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What is ME - What is CFS?
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Saying
NO
to CBT
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Experiences of Graded Exercise
One person's
experience of GET. |
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FINE Trials Experience
The FINE trials and the PACE trials seem to be the two ugly
sisters of MRC policy on ME. Read one participant's experience of these costly trials
(here). |
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2006 |
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Severe ME
 From
the ME Conference 2006 DVD - Severe ME as shown from Norwegian TV channel
NRK's Puls programme.
IiME and Meridian ITV join
forces to publish
 the
Meridian interview of ME patients. ME as it is - one of the best media
pieces on ME.
Click here. |
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Invest in ME Conference presentations in Journal of Clinical
Pathology
Click
here
to read more. |
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Canadian
Guidelines Accepted by NHS ME Doctors
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Advance in the
Biomedical Investigation of M.E
From MERGE/Neil Abbot and Dr. Vance Spence
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Canadian Diagnostic Criteria
From the Journal of Chronic Fatigue Syndrome
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2005 |
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Professor Malcolm Hooper - Engaging with ME
From Invest in ME articles
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The GIBSON INQUIRY
UPDATE The Gibson Inquiry published here.
Read
IiME response + further comments here. Click on image to left for
Inquiry report. |
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IiME Response
to NICE Draft Guidelines
IiME have published a response to the
NICE Draft Guidelines for CFS/ME. Our response - PDF
here
/Nice pro-forma
here.
Your own comments page
here
Margaret
Williams' comments
here |
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