The National Institute for Health and Clinical Excellence (NICE) says there is no evidence to update Clinical Guideline 53 on CFS/ME and it will next be reviewed in August 2013. WAMES responded to the consultation and argued that there is sufficient biomedical research evidence to question the appropriateness of recommending CBT and GET for all people with ME and CFS.
The PACE trial recruited 640 patients who met the Oxford criteria for CFS from 6 UK CFS clinics. The aim was to assess after a year the effectiveness of SMC (Specialist Medical Care), APT (Adaptive Pacing Therapy), GET (Graded Exercise Therapy) and CBT (Cognitive behavioural Therapy). They concluded that CBT and GET can safely be added to SMC to moderately improve outcomes for chronic fatigue syndrome, but APT is not an effective addition and their findings were published in the Lancet.
The Medical Research Council (MRC) is committing £1.5m for research into the causes of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME). The aim is to promote new and innovative partnerships between researchers already working in the CFS/ME field and those in associated areas, such as pain and fatigue. The aim is also to encourage and support more high-quality CFS/ME research proposals.
The funding call will focus on one or more of six priority areas identified by the MRC’s CFS/ME Expert Group in consultation with research leaders in related areas and representatives of two major CFS/ME charities:
More information on MRC website
The deadline for submitting proposals will be 7 June 2011.
Minutes of the meeting to discuss research priorities.
On 6th January the GMC (General Medical Council) lifted Dr Myhill’s suspension and restored her license to practise medicine. Dr Myhill’s first reaction was to thank her many friends who had stood by her. The GMC was forced to accept that no patient had been harmed or put at risk of harm and that the reasons they had previously given for Dr Myhill’s suspension had no proper evidence base.
Since her April Hearing, Dr Myhill has conducted her own defence without any legal assistance. She pointed out to the GMC at her October, December and January hearings that the GMC had not presented any formal allegations or indeed any case against her – this the GMC is obliged to do by law. She did not even know if she faced criminal or civil charges. In the course of her defence Dr Myhill pointed out to the GMC that it had broken the law with respect to the 1983 Medical Act, the GMC’s own 2004 Fitness to Practise Rules and procedures, the Data Protection Act and the Human Rights Act. In particular it had abused her right to a Fair Trial, her right to Freedom of Expression and her right not to be punished without due process.
Dr Myhill was particularly concerned because the GMC had taken patients’ NHS private and confidential medical records without patient knowledge or permission and in breach of the GMC’s own procedures. Furthermore, it used confidential information contained within those notes that it had no right to use.
The GMC initially refused to consider evidence presented by Dr Myhill, it refused her right to call witnesses, refused to accept facts as facts and refused to accept that the accusing doctors had told lies against her. The GMC obtained and used documentation improperly, which is in breach of the Data Protection Act, it failed to give her adequate time to prepare her defence, failed to try her within a reasonable time, failed to take basic witness statements from complaining doctors, and accepted the most trivial of complaints to try and bolster their case.
Dr Myhill had planned to take the GMC to the High Court in December but this hearing had to be postponed because of the snow. It remains Dr Myhill’s intention to pursue her High Court action against the GMC on the grounds that it has blatantly infringed and broken the law and its own rules. As a direct result Dr Myhill, together with thousands of her patients, has suffered as a result of GMC maladministration. The GMC has imposed minor administrative sanctions of Dr Myhill’s practice but she expects to get these GMC face-saving gestures lifted at the High Court so she has a completely clean license to practise.
Further information from: www.supportdrmyhill.co.uk
HCG (Human Chorionic Gonadotropin) is a hormone produced by the placenta during pregnancy.
An American researcher’s small one-year study included 12 patients who had severe, intractable pain for five years or more. Six of them had spinal conditions, and the other six suffered from either fibromyalgia, arthritis or headaches. All of them had constant pain and were taking long-acting narcotics for chronic pain and short-acting narcotics for breakthrough pain. Their “morphine equivalencies” ranged from 500 to 1,500 mg a day – a massive dose.
The patients were given a challenge dose of 500 to 1,000 units of HCG subcutaneously. In just one week, 8 of the 12 patients reported feeling improvement in pain symptoms. For the next year, those 8 patients continued to receive 1 to 3 HCG injections per week. No other changes were made during the patients’ therapy. Another 30-40 intractable pain patients were then put on HCG, and in 85 to 90% of them experienced positive results.
Human Chorionic Gonadotropin in Pain Treatment,” Practical Pain Management
The Welsh Blood Service joined other UK blood services in implementing the lifelong blood donation ban for people with ME/CFS.
“As of 1st November 2010, blood donors who report that they have had ME/CFS will be permanently excluded from giving blood in the UK. This change is being made on the grounds of donor safety, as ME/CFS is a relapsing condition. It brings practice for ME/CFS into line with other relapsing conditions or neurological conditions of unknown origin.” Clara Swinson, Department of Health
WAMES is delighted to welcome retired paediatrician Dr Nigel Speight to join WAMES as a medical advisor.
The annual ME Association meeting came to Cardiff when a panel of experts answered questions from people with ME and carers. The panel consisted of Dr Charles Shepherd, Jane Colby, Dr Nigel Speight, Sue Luscombe and Jan Russell. The 70 participants appreciated the opportunity to speak to the panel and explore the displays.
WAMES is delighted to have been awarded a £5000 Awards for all Wales grant from the Big Lottery Fund for our campaign which starts in October entitled Information for all. The aim of the campaign is to improve the nature and availability of information for patients, carers and professionals about the neurological condition ME. Some of the information will be bilingual and be downloadable from our new website.
The Minister for Health and Social Services accepted the recommendations of the Task & Finish Group on CFS/ME in Wales report. Local Health Boards have been asked to begin implementing the recommendations with immediate effect. The report and her response are available on the WAG website. Read WAMES’ statement.
Rhif Elusen Gofrestredig 1144534
