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Welcome to The 25% M.E. Group Website
Support Group for Severe M.E. Sufferers

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| NICE | DWP | PARLIAMENTARY INQUIRY | RCHCP | | DIAGNOSIS | |NHS SCOTLAND |

| EXERCISE & CBT | PACE |

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All things relating to NICE

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comments-form-25% ME Group CG53 FINAL.pdf

Why Clinical Guideline 53 is unfit for purpose: 25% ME Group submission to 10 year Surveillance Review July 2017

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INFORMATION RELATING TO THE NICE CONSULTING GROUP

National Institute for Health and Clinical Excellence
Review of Clinical Guideline (CG53) – Chronic fatigue syndrome/ myalgic
encephalomyelitis (or encephalopathy): diagnosis and management of chronic
fatigue syndrome, myalgic encephalomyelitis (or encephalopathy) in adults and
children.
Stakeholder Comments

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JUDICIAL REVIEW INTO NICE CFS/ME GUIDELINES

Norwich ME sufferer Wins Court Ruling

Review of JR Court Procedure

Response to the ruling concerning the NICE Judicial Review into ME

LINK

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INFORMATION SENT OUT FROM NICE

Letter to Wider Group 23 12 05 (2)

CFS guidelines full report amended`

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  RESPONSES FROM GROUPS AND INDIVIDUALS

Hooper letter to BMJ re NICE.

Klimas, Wessely and NICE Redefining CBT.doc

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Press and Web Response to NICE Draft Guidelines

NICE draft Response 2.10.06.doc

MEDIA CAMPAIGN

NICE_press_release 25% Tymes & BRAME.

NICE Guidelines Agreed Statement by Charities

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LInks to NICE ME/CFS Guidance Documents

http://guidance.nice.org.uk/CG53/niceguidance/pdf/English

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Press and Web Responses to NICE Final Guidelines

25% ME GROUP

Margaret Williams

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25% ME GROUPChronic fatigue syndrome / Myalgic encephalomyelitis (CFS/ME) guideline (consultation)

Details have been sent out to all 25% ME GROUP Patient Reps for Consultation on the Doc - 9/10/06

RESPONSE TO NICE Report  Comments form - 25% ME GROUP.doc

Margaret Williams - Concerns re NICE Draft.pdf & ADDENDUM_to_Response_to_NICE.pdf

Some voices from the the international ME community2.doc

Item for Westminster APPG on ME Notes for Response to NICE.doc

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Response from other Stakeholders and Individuals to the Draft Document

BRAME Comments Proforma on NICE CFS ME Guidelines.

MEA response to NICE 17th Oct.doc

Response - Consortium of West Midlands Groups.

Warks Network for M E group comments on NICE draft guidelines.

TYMES Trust submission

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Chronic fatigue syndrome/Myalgic Encephalitis Implementation planning meeting - Thursday 5 October 2006

NICE Implementation minutes.doc

CFS ME implementation planning mtg notes Oct 06.doc

MEA Reply to Ms Polson at NICE.doc

25% ME GROUP - COMMENTS ON THE NICE IMPLEMENTATION PLANNING MEETING.doc

Ltr to Ms Polson Re mins 15th November 2006.doc

SUMMARY OVERVIEW OF SOME INITIAL RESPONSES.doc

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Health Select Committee Inquiry into NICE

 

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INFORMATION RELATING TO THE DEPARTMENT OF WORKS AND PENSION (DWP)

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THE WORK CAPABILITY ASSESSMENT – A CALL FOR EVIDENCE

This is the submission from the 25% M.E. Group to the Independent Review of the Work Capability Assessment

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THIS SECTION RELATES TO THE CONSULTATION OF A GUIDANCE DOCUMENT FOR ME, WHICH WAS COMPLETED IN 2007

25% ME GROUP RESPONSE TO DWP GUIDELINES version 10

DWP cfs-me may 2007 final_V10

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25% ME GROUP INFORMATION

READABLE VERSION of submission to DWP

We submitted a strong submission to an earlier draft of the Medical Guidance CFS/ME document, there were so many changes that we produced a 'readable' version in order to help you. A colour version with all changes made to the DWP document on 17.10.05 is not included here at this time.

It should also be noted that further drafts have been produced since this one.

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Guidance Documents produced by the DWP

CFS_guidance revised version V8 March 2006.doc

CFS_guidance v9 final.doc

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COVERING LETTER CONCERNING SUBMISSION 17th October 2005

SUPPORTING DOCUMENT CONCERNING SEVERELY AFFECTED

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RESPONSES TO FURTHER DWP RELEASED DOCUMENTS

25% Group response 6.04.06.doc

DWP 25 GROUP RESPONSE - read version.doc

DWP 25 GROUP RESPONSE COLOUR.doc

GET issues.doc

Greg Crowurst - DWP Document.wps.doc

DWP Covering letter.doc

COMMENTS ON THE MARCH 2006 VERSION OF THE DWP -D. JONES.doc

Comments on the DWP version 8 of March 2006 - M Williams.doc

18th July 06 - DWP letter re Prof Wade

NOTES ON DWP MEETING

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BRAME STATEMENT Word DOC

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DWPMEOrganisationsResponse.V9.doc

 

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Information relating to the Parliamentary Inquiry into CFS/ME

setup by Dr Ian Gibson in December 2005

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Feedback on the Gibson Inquiry

A few facts about the Gibson Report

Margaret Williams 29th November 2006

LINK

Digest of Gibson Report on CFS.ME.doc

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Information from the Parliamentary Panel

Press Release - Group on Scientific Research into ME.doc

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Official Gibson Report

LINK

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Summary of Gibson Report

Summary of Key Points in Gibson Inquiry report (2).doc

Official Inquiry Website

LINK

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Information from the 25% ME GROUP

Letter to Dr Gibson in response to the Official Press Release

Cover submission letter.doc

25% ME GROUP Submission to Gibson (2).doc 

You can learn a lot about the UK from the lives of people with ME.doc

Outline of 25% ME Group Presentation to Gibson Inquiry.doc

Gibson Inquiry - Day 1 - Comments by Prof Malcolm Hooper

A CRITICAL RESPONSE TO GIBSON INQUIRY REPORT LINK

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Information from BRAME

BRAME EvidenceGibsonInquiryonME.doc

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Information from the Scottish Cross Party Group

Covering letter inc. key issues.doc

1 CMO report on research.doc

2 MRC Research Strategy.doc

3 Evidence review.doc

4 Concerns regarding Exercise.doc

5 Carruthers Contents.doc

App II Debate 9.6.05 - LOST FILE

6 Subsequent developments.doc

7 Briefing Paper extracts.doc

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Information from Doris Jones

Dr Ian Gibson letter.doc

Memorandum for Health Committee 2.doc

Second Memorandum for Health Committee 2.doc

MEMORANDUM TO HEALTH COMMITTEE.doc

Dr Ian Gibson letter Jan06.doc

Second submission to Gibson Inquiry 2.doc

Nancy Turnbull letter.doc

Dr Ian Gibson 4 letter.doc

Dr Ian Gibson 5 letter april 06.doc

SYMPTOM FREQUENC april 06Y.doc

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Information from Margaret Williams

Marg Williams-Obs on DLA Handbook for Gibson Inquiry.doc

Organic evidence for Gibson.doc

ME WHY NO ACCOUNTABILITY.doc

FOR UK PARLIAMENTARY INQUIRY INTO ME.doc

SQUARING THE CIRCLE.doc

http://www.meactionuk.org.uk/FINAL_on_NICE_for_Gibson.html

Concern about misinformation to the gibson Inquiry.doc

Notes re the evidence of Raymond Perrin PhD to the Gibson Parliamentary.doc

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

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Other Information to the Gibson Inquiry

ME_overview.pdf

KS to Ian GibsonMP 15 April 2006.pdf

KS to Gibson Group 1 May 2006.pdf

 

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Dangerously Diminishing

A response to the RCPCH Evidence Based Guidelines for the Management of CFS/ME

on behalf of the 25% ME GROUP

Greg & Linda Crowhurst

April 28 2005

LINK TO WORD DOCUMENT

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[1] Heterogeneity of ‘CFS/ME’ – dangers of failure to subgroup
 From ScotME submission to the Gibson Parliamentary Inquiry, January 2006. Highlighting the need to subgroup patients as currently diagnosed in the interest of safe and effective healthcare. ScotME are acknowledged in the document. Useful to argue for appropriate action on the part of the NHS, Health Ministry etc.

[2] Distinguishing ME/CFS from Depression and Somatisation
 Relevant extracts from the ‘Canadian’ and overview Canadian documents. Useful for General Practitioners and other medics, particularly if an ME patient is being wrongly labelled.

[3] Autonomic Dysfunction
Covers:
 Personal testimony regarding problems relating to low blood pressure / autonomic dysfunction, illustrating the need for testing to identify such problems and how this can be conducted;
 Research illuminating patients’ presentation;
 Information on the Management and Treatment of Autonomic Dysfunction;
 Capacity to distinguish patients from healthy controls and other patient groups on the basis of Testing for Orthostatic Intolerance.

[4] Is Exercise Safe?
 The case against exercise, including many examples of research findings challenging the wisdom of exercise for people with ME. (From ScotME submission to the Gibson Parliamentary Inquiry, January 2006.) Could do with review / update, even if only to say that nothing that has happened since / been published since changes the thrust of this paper in any way.

[5] Sources of Evidence and Priority Status
 Unpicks the argument that ‘Randomised Controlled Trials’ are necessarily the best source of evidence, providing some contrasting findings from patient surveys and citing CMO’s Report assessment of the disparity.

[6] Consideration of Evidence on CBT and Graded Exercise
 Referenced extract from the ‘Canadian’ criteria paper.


The general theme of the following four documents is the existence of evidence for interventions that may be helpful and that doctors in the NHS are unlikely to be aware of:

[7] Essential Fatty Acids - rationale for use and evidence from treatment trials*
 Referenced extract from: Carruthers, B. et al. Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome: Clinical Working Case Definition, Diagnostic and Treatment Protocols Journal of Chronic Fatigue Syndrome, Vol. 11 (1) 2003; pp7-115

[8] Immunoglobulins – rationale for use and evidence from treatment trials
 Critical scrutiny of York review coverage, with some material from ‘Canadian’ paper backing rationale for immunological intervention.

[9] Gancyclovir Study – comparison of original publication with reporting in York review
 Comparative extracts, indicating that the coverage in the ‘York Review’ for the National Institute for Health and Clinical Excellence failed to do justice to the reported findings of this small study.

[10] Human Tragedy and the Heart of the Matter - the work of Martin Lerner MD
 Relating to the tragic death of a young ‘CFS’ sufferer in the US with summaries of relevant and revealing research on antiviral therapy by Martin Lerner MD (who is also the author of the gancyclovir study above

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SCOTTISH GOOD PRACTICE STATEMENT (SGPS) ON ME IN SCOTLAND

Guidelines for General PractitionerS in Scotland

Latest - 2010

Scottish Good Practice Statement for GPs – info and call for feedback (already submitted)
This document covers the SGPS & the Group’s position on the SGPS, flags up future plans, and seeks feedback about how members are finding the SGPS is impacting in practice, and also any experiences of consultations with clinicians who were on the working group or peer review group involved in producing it. Includes helpful extracts regarding the care of severely affected patients that members may wish to draw to the attention of their general practitioner and others involved in their care. The extracts on the evidence for effective pain relief for neuropathic pain may be of assistance to members throughout the UK.

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Long Term Conditions ‘Self Management’ Approach

The NHS approach to M.E. in Scotland, for the most part, appears to fall under the generic remit of ‘long term conditions’ (new term for chronic illnesses). ‘Self management’ is the overarching approach. Advocacy of self management may look like a statement of the obvious – if only we could hand our ‘condition’ over to someone else to ‘manage’. What does it mean? Well, according to the Self Management Strategy.......:

Main Document

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CHALLENGING EXERCISE AND CBT

A summary of “Reporting of Harms Associated with Graded Exercise Therapy and Cognitive Behavioural Therapy in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome” by Tom Kindlon

Is exercise safe_.rtf

Sources of Evidence and Priority Status.rtf

CBT and Exercise

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PACE RELATED INFORMATION

Publication of ‘PACE’ Trial Findings in The Lancet’

25% ME Group Press Release

Prof Hooper Press Release

Prof Hooper What is 'Normal'_ Concerns re PACE benchmarks from Malcolm Hooper.rtf

PACE - SLIDES FOR HOOOPER PRESENTATION to FORWARD ME.ppt

TYMES Trust Press Release

Joint letter to Guardian :-

The letter above, highlights some key concerns about ‘PACE’, including the very low recruitment rate (20%).

It was submitted to ‘The Guardian’ by a group of patients and carers in response to some unfortunate reporting. It was not published.

PACE article does not mention FINE findings - Letter to Lancet

This is being sent on behalf of Professor Malcolm Hooper.

"In view of the content of the "Health Report" broadcast that was hosted by Dr Norman Swan on Australian radio (ABC Radio National) and the comments of Richard Horton, Editor-in-Chief of The Lancet, Professor Hooper has decided to place his complaint in the public domain forthwith so that people can read it for themselves and form their own judgment.

It is important to make very clear that ME/CFS is not a somatoform disorder but a serious multi-system organic disease."

Please click on the links below to view the complaint on a web page or download as a Word doc. Permission to repost.

WEBPAGE

WORD DOC

THE ‘PACE’ & ‘FINE’ TRIALS: UPDATE - 3/8/11

 

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