Below you will find an important Press Release from the "World Health Organisation" (WHO):-
 about the Classification of the neurological disorder ME (myalgic encephalomyelities),     sometimes called "Chronic Fatigue Syndrome" (CFS).
 For a better understanding of this press release it is advisable to read the Hansard Report of the House of Lords ME Debate at Thursday, 22 January 2004. The Countess of Mar has done a wonderful job there: in a briefing for the House of Commons Select Health Committee, she has denounced the practises of the psychiatrist Prof. Simon Wessely - and his "Wessely-School" with patients suffering from the neurological disorder ME.
 This mighty group - with financial ties with - between others -the insurance-, chemical- and pharmaceutical industry - has tried for many, many years to hide the truth about the seriousness of this severe disabling disorder.
 "...Patients with myalgic encephalomyelitis, particularly children, have suffered gross and barbaric abuse and persistent denigration as a consequence of the beliefs of these psychiatrists who are attempting to control the national agenda for this complex and severe neuro-immunological disorder..." Prof Simon Wessely has even personally changed the "Classification of Diseases" (ICD) of the WHO in the UK version of this document. He has now been whistled back by the WHO - see below.
 The Hansard report of the House of Lords Debat on ME can be found at: http://www.publications.parliament.uk/pa/ld199900/ldhansrd/pdvn/lds04/text/40122-12.htm#40122-12_unstar0
 A complete transcript will be available on MEinformUK:
 http://health.groups.yahoo.com/group/MEinformUK/ The briefing of the debat by The Countess of Mar is based on a document, prepared by Prof. Malcolm Hooper et al. - Emeritus Professor of Medicinal Chemistry, in collaboration with members of the ME community, Department of Life Sciences, University of Sunderland, SR2  7EE, UK.
 Prof. Hooper describes the horrors - done to seriously ill sufferers from myalgic encephalomyelits.
 This unique, historical paper is about the terror and the misuse of "psychiatry", which is worse and takes place on a bigger scale then what happened in Soviet Union (USSR) under communist reign:
 ".....A CONSIDERATION OF THE ROLE OF PROFESSOR SIMON WESSELY AND OTHER MEMBERS OF THE "WESSELY SCHOOL" IN THE PERCEPTION OF MYALGIC ENCEPHALOMYELITIS (ME) IN THE UK......."
 These psyciatrists have blood on their hands:
 ".....Suicide rates are very high, not necessarily because patients are psychiatrically disturbed, but because the unavoidable isolation and the physical suffering are simply unbearable without adequate support. The losses are many, including loss of career, loss of marriage, loss of ability to be self-supporting and loss of independence....."
 ".....American and Australian research has shown that the quality of life in this disorder is lower than for any other chronic illness group apart from terminal cancer and that the quality of life is uniquely disrupted on all levels......."
 This unique, historical paper by Prof Hooper et al can be found at: http://peter200015.tripod.com/ME/index.blog?from=20040117 http://peter200015.tripod.com/ME/index.blog?from=20040118
http://peter200015.tripod.com/ME/index.blog?from=20040119
http://peter200015.tripod.com/ME/index.blog?from=20040120
http://peter200015.tripod.com/ME/index.blog?from=20040121

 In the UK there are preparations for legal actions against the psychiatrist Simon Wessely ???

   PRESS RELEASE
 Classification Principles provided by the World Health Organisation  re ME/CFS
 On 28th June 2001 Andre L'Hours, the Technical Officer at the WHO headquarters in Geneva who is responsible for the ICD, confirmed that it was "unacceptable" if the same disorder had been included in two places in the ICD-10 and that the same disorder could not be differently categorised under the one WHO banner.  When he was informed of what was happening in the UK, he promised to look into the matter.
 Andre l'Hours confirmed that the ICD classifications are approved by the World Health Assembly and therefore take legal precedence over unapproved modifications made by a WHO Collaborating Centre.
 On 16th October 2001, Dr B Saraceno from the WHO provided the following clarification in writing:
 "I wish to clarify the situation regarding the classification of neurasthenia, fatigue syndrome, post-viral fatigue syndrome and benign myalgic encephalomyelitis.  Let me state clearly that the World Health Organisation (WHO) has not changed its position on these disorders since the publication of the International Classification of Diseases, 10th Edition in 1992 and versions of it during later years.
 "Post-viral fatigue syndrome remains under the diseases of nervous system as G93.3.  Benign myalgic encephalomyelitis is included within this category.
 "Neurasthenia remains under mental and behavioural disorders as F48.0 and fatigue syndrome  (note: not THE CHRONIC FATIGUE SYNDROME) is included within this category. However, post-viral fatigue syndrome is explicitly excluded from F48.0.
 "The WHO ICD-10 Diagnostic and Management Guidelines for Mental Disorders in Primary Care, 1996, includes fatigue syndrome under neurasthenia (F48.0) but does not state or imply that conditions belonging to G93.3 should be included here.
 "I would also like to state that the WHO's position concerning this is reflected in its publications and electronic material, including websites.
 "It is possible that one of the several WHO Collaborating Centres in the United Kingdom presented a view that is at variance with WHO's position.
 "Collaborating Centres are not obliged to seek approval from WHO for the material they publish.  I understand that the Collaborating Centre concerned has now made changes to the information on their website after speaking with WHO".
 In the debate on ME/CFS in the House of Lords on 22nd January 2004, the Health Minister (Lord Warner) stated:
 "The current version, ICD-10, classifies CFS in two places: as neurasthenia in the mental health chapter, F48.0; and also as myalgic encephalomyelitis in the neurology chapter, G93.3.  The diagnostic criteria used in the ICD shows that the WHO has essentially put the same condition in both places.  That is the WHO's formal position".
 Following his speech (recorded in Hansard at column 1195), a copy of this letter was  given to the Health Minister by the Countess of Mar; Lord Warner said that he would take it to the Chief Medical Officer to be discussed.
 On 23rd January 2004, Andre l'Hours from the WHO headquarters provided the following clarification  (in writing):
 "This is to confirm that according to the taxonomic principles governing the Tenth Revision of the World Health Organization's International Statistical Classification of Diseases and Related Health Problems (ICD-10), it is not permitted for the same condition to be classified to more than one rubric as this would mean that the individual categories and subcategories were no longer mutually exclusive".
 Andre l'Hours also stated that if a country accepts the WHO Regulations concerning nomenclature (which the UK does), then that country is obliged to accept the ICD classification.
  For the avoidance of doubt, the UK has registered no reservations about the ICD-10 and therefore formally accepts it.

From: "Jane Bryant"
The AfME Press Release - ME/CFS Centres
 ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
  This AfME press release is blatant.

 What this AfME press release delineated below illustrates so clearly is just how deeply this charity is embedded in the Department of Health UK.
 Embedded with no remit nor mandate from its members/subscribers who have not had and Annual General Meeting with this, our charity, for the last eight years.
 How can a charity that is so embedded with the psychiatric lobby that has to date done so much damage, independently represent its members?
 How can a charity that not only sanctions the psychosocial treatments of APT/CBT/GET for the organic illness ME, but also sells them direct to the public be in any way impartial?
 This AfME press release is a mine of useless information that we have all heard before.
 Nowhere does it state precisely who has applied for the funds to set up these Centres.

 Why?

 This is a key issue for AfME members/subscribers and the ME/CFS Community. We have asked for this information again and again and again.
 The press release talks endlessly about jargon and terminology. Nowhere does it name names. Not once. Not one. Except for that of Professor Pinching, the AfME Advisor.
 The press release states: "We have been in touch with the CFS/ME Programme Manager at the Department of Health and for the next bulletin we will be able to provide you with further details....."

 In touch?

 AfME has an employee seconded to the Department of Health Secretariat that we tax payers are funding. AfME has had full and frank details of these Centres for months. Information that they have refused to divulge to their members/subscribers and the ME/CFS Community.
 I am quite simply appalled at the way and the manner in which information regarding the launch of these ME/CFS Centres in the UK is being mishandled by both AfME and the Department of Health. Read this AfME press release and you will see what I mean.
 Many of us in the ME/CFS Community are not children. We are the expert patients.
 Give us the information.

 Jane
London UK
 ``````````````````````````````
  THE AFME PRESS RELEASE

 Stop Press!

  Today (Tuesday 20 January 2004) the Government announced the new centres and local support teams for CFS/ME patients that will be funded from April 2004 onwards. Eight completely new centres will be created, with the other 4 being established from existing teams already working in the field. The Department of Health wanted to ensure a good spread of services and there will be 7 Clinical Network Coordinating Centres (CNCCs) in the north of England and 5 in the south.

 Clinical champions

  Clinical champions for the CNCCs are from a variety of specialties and include: immunologists, infectious disease specialists, general physicians, haematologists, rheumatologists, rehabilitation specialists, clinical psychologists and psychiatrists. It is encouraging for us that such a wide range of specialist doctors have taken an interest in developing services for CFS/ME patients.

 28 Local Multi-Disciplinary Teams

 As well as the 12 centres, the press release announced 28 local teams to provide a multi-disciplinary approach ­ again with a good geographical spread. This is higher than we expected and we look forward to working with the local teams.
  Details.…..

 We have been in touch with the CFS/ME Programme Manager at the Department of Health and for the next bulletin we will be able to provide you with further details on the different types of services, how the networks will be established and the state of play with the next phase of funding.
 Below is an explanation of the rationale behind the service development that was prepared before the press release today……..

  Understanding the rationale of NHS CFS/ME service development

 Assessment of applications

 In Bulletin 4 we informed you of the bid process and the 2 phases of funding. Applications for the first phase were considered by 2 assessment panels, made up of the members of the Department of Health's (DoH) Service Investment Steering Group (SISG), in December and met as a whole group on 15 December to finalise the bid process.
 There were 4 patient representatives on the assessment panels and the Chairman of the SISG (Professor Pinching) wanted to highlight how important their involvement was as they gave great depth to the debates on the applications. They were not representing any organisation and were there as individuals to give their own frank views. This has demonstrated that patient representatives and professionals have worked effectively together.

 Help from you / for you

 Applicants will be informed by the DoH in January if they have been successful or if they should reapply during the second phase of funding in April 2004. For those bids being asked to reapply, they will be directed towards AfME with the aim of putting them in touch with patient representatives via the support groups. If you feel daunted by the possibility of working with a Primary Care Trust (PCT) or health professionals, remember we've produced a guide to working as a "user representative". [If you want additional copies of this please contact us ­ details at the end of the bulletin.]
 There will be groups that have gone through the application process successfully with their local PCT and I'm sure will be able to offer useful tips. For those groups or patient representatives out there that have any useful tips, perhaps you could let us know so we can pass them on. Even better, if you are happy to have a chat with other groups about the work you've done it would be great if you could contact us so we have a list of advisers. Thanks!
 We are also sure there will be lessons learnt from the first phase of funding and we'll be meeting with the Programme Director at the DoH and will report back in the next bulletin.
 Background to the CFS/ME service investment
 As a reminder, the DoH has produced detailed background information on the funding and if you want to read this in full, it can be viewed by accessing their website (www.doh.gov.uk/cfsmefunding/index.htm).
 As we know all the jargon and terminology seems a little confusing, we've written brief descriptions later in the bulletin of the types of service that will be referred to:
 Clinical Network Coordinating Centre (CNCC)

 Local Multi-Disciplinary Team (LMDT)

 Who has applied for the funds?
 We know that this is a question on many lips. There have been a variety of health professionals from a wide range of clinical specialities applying to be the clinical lead for these services. If the bids meet the assessment criteria and they prove they are capable of providing a good service of care they will be awarded funding, regardless of the clinical specialty. There has been a huge interest from health professionals new to this field, and it is important that we encourage new clinical "champions" who will promote the need for this illness to be properly diagnosed and managed.
 What happens after the funding has been announced?
 It is expected that most or all of the CNCCs will be funded in the first phase of funding and they will have responsibility for developing their local patches. A Collaborative of all the CNCCs will be formed and the clinical leads will all meet at an early stage to discuss how a network will develop, ensuring effective communication.
 It should be emphasised at this time that developments for improving service provision and care for CFS/ME patients will be an evolving process. By bringing together the health professionals and continually having patient and carer input will assist with the process.
 To ensure that the service providers learn from good practice, there will be monitoring and performance assessments that will feed into the Collaborative. Advice from the NHS Modernisation Agency will assist with effective networking that will be established from the outset.
 As services receive funding and start to develop, we will need to encourage representation from patients and carers on their local implementation teams or development groups. This is where we are hoping to be able to offer you the tools and skills to be able to do this effectively. Again, if you are interested in attending an ME friendly workshop to learn these skills, please contact Lizzie.

 Types of service provision

 Clinical Network Coordinating Centres (CNCC)

 The Department of Health's plan is to have a number of centres that will be distributed evenly across England. These may be new centres where there is currently no M.E. service provision, or in areas where there is an existing service these will be expanded.
 The CNCC will act as a central regional `hub' with a number of local multidisciplinary teams working as `offshoots' to complete the network of local services. Part of their remit will also be to coordinate, or `network' with other centres across England to ensure consistency in the treatment of patients and the education of health professionals.
 Some of the other specific aims of the CNCCs will be:
 To champion the development of multidisciplinary teams in their designated area
 To provide specialist assessment, diagnosis and advice on management for both patients and health professionals
 To ensure a smooth transition of services for children/young people to adults
 To develop models of care for those who are severely affected
 To foster partnerships with voluntary organisations
 While the term `centre' is being used by the Department of Health, unfortunately, one thing you will not see is a designated M.E. clinic within your hospital. There are also no funds set aside for the building of any specialist sites or clinics. In practice, centres will be based within existing NHS facilities.

 Local Multidisciplinary Teams (LMDT)

 These teams will be established to support the development of primary and secondary care services. This means they will support both GPs (who are likely to have the first contact with an M.E. patient) and also other health professionals based within a hospital or outpatient setting. There will be several teams linked in to each CNCC.
 The team will consist of staff that can contribute a mix of skills -hence the phrase multidisciplinary. They might include for example, nurses, occupational therapists, physiotherapists and dieticians.
 Part of the work of the LMDTs will include providing help and support for families and carers of people with M.E. They will also incorporate the specialist needs of those who are severely affected by developing a network of domiciliary (home based) services, which will also incorporate education and social services where appropriate.
 They will also be working in partnership with the patients themselves, carers and voluntary organisations such as Action for M.E. to develop a resource of information and advice.

 Keep us informed
 Please contact us if we can help you with specific questions or if you have any queries on the information in these bulletins. If there are any NHS matters that you need explaining, they may be useful for others to hear so please let us know ­ we'll do our best to answer them in the next bulletin!
 
 Claire Wilkins, Project Manager NHS and Patient Involvement (claire.Wilkins@afme.org.uk)
 Lizzie Meadows, Project Officer ­ NHS and Patient Involvement (lizzie@afme.org.uk)
 Tel: 0207 329 2299 ~~~~~~~~~~~~

Treating Fibromyalgia with Testosterone
           Source: The Chronicle of Higher Education, December 12, 2003. Report on
                   fibromyalgia research taking place at Dartmouth College.

What it is: A way to treat the muscle pain, chronic fatigue, and other symptoms of fibromyalgia syndrome using hormones administered through a gel.

The market: Fibromyalgia, a musculoskeletal pain disorder, affects three  million to six million people in the United States, 95 percent of whom are  women. There is no known [single] treatment for the disease, the cause of  which is unknown.

The spark: For Hillary D. White, it was all very personal. An associate  professor of microbiology and immunology at Dartmouth Medical School, Dr.White was dealing with the stress of applying for a big federal grant when she began to realize how much her back and legs were hurting, and how tired she was feeling.

She soon recognized that her symptoms were those of fibromyalgia. Because  of her interest in reproductive immunology, she knew that hormones like estrogen and testosterone are thought to limit pain. She also knew that male hormones are anabolic – "they build muscle."

Then one day she let her mind wander. The symptoms of fibromyalgia, she realized were "eerily similar" to those for low testosterone: chronic fatig ue,sleeplessness, and muscle wasting. "I was lying down at home feeling pain all over and feeling miserable," she says, when a simple thought popped int o her head. "Maybe this is a problem with testosterone."

Developing the invention: A blood test gave strength to her theory. While most healthy women have low levels of testosterone, Dr. White's were extremely low. "Undetectable," she says.

Under treatment from a fellow Dartmouth physician, she began investigating testosterone. The results "were immediate and enormous," she says. Soon after, she applied for a patent.

Invention's status: Dartmouth received a patent on Dr. White's idea in Augu st 1999, just five months after applying for it. The university licensed the  invention to a New Hampshire company, Bentley Pharmaceuticals, in October  2000.

Dartmouth chose Bentley because the company had already developed a technique for administering testosterone through the skin by use of a gel, but the company hadn't firmly settled on the kinds of ailments it hoped to trea t. "We had the symptoms; they had the product," says Dr. White.

Bentley subsequently helped pay for a 12-patient clinical trial to test the testosterone gel for treating fibromyalgia, with some additional financial  support coming from a state program designed to help promote the  development of local companies.

The company is now planning a larger follow-up trial. Bentley and Dartmouth have also jointly applied for a patent specifically on the use of the gel f orm of testosterone to treat Fibromyalgia.

Because the product is not yet on the market, Bentley is not paying royalti es to Dartmouth, but the company has made some initial "milestone" payments as it moves to develop the product.

Meanwhile, Dr. White continues her research. She suspects that other hormones might work as well or better in treating fibromyalgia. "I don't th ink testosterone is the entire story."

                                      -Goldie Blumenstyk.

Evidence for spinal cord hypersensitivity in chronic pain after whiplash
injury and in fibromyalgia.
Source: Pain. 2004 Jan;107(1-2):7-15.
Authors: Banic B, Petersen-Felix S, Andersen OK, Radanov BP, Villiger PM,
Arendt-Nielsen L, Curatolo M.
Division of Pain Therapy, University Hospital of Bern, Switzerland

Patients with chronic pain after whiplash injury and fibromyalgia patients display exaggerated pain after sensory stimulation. Because evident tissue damage is usually lacking, this exaggerated pain perception could be explained by hyperexcitability of the central nervous system. The nociceptive withdrawal reflex (a spinal reflex) may be used to study the excitability state of spinal cord neurons.

We tested the hypothesis that patients with chronic whiplash pain and fibromyalgia display facilitated withdrawal reflex and therefore spinal cord hypersensitivity. Three groups were studied: whiplash (n=27), fibromyalgia (n=22) and healthy controls (n=29).

Two types of transcutaneous electrical stimulation of the sural nerve were applied: single stimulus and five repeated stimuli at 2 Hz. Electromyography was recorded from the biceps femoris muscle.

The main outcome measurement was the minimum current intensity eliciting a spinal reflex (reflex threshold). Reflex thresholds were significantly lower in the whiplash compared with the control group, after both single (P=0.024) and repeated (P=0.035) stimulation. The same was observed for
the fibromyalgia group,after both stimulation modalities (P=0.001 and 0.046, respectively).

We provide evidence for spinal cord hyperexcitability in patients with chronic pain after whiplash injury and in fibromyalgia patients. This can cause exaggerated pain following low intensity nociceptive or innocuous peripheral stimulation. Spinal hypersensitivity may explain, at least in
part,pain in the absence of detectable tissue damage.