Latest News

NICE Guidelines

The long awaited NICE guidelines are now out. They are a definate improvement on the controversial first drafts, and are worth obtaining . There are documents for service users (patients) as well as service providers. Take copies with you to your GP if they don't believe in ME/CFS!

Service users document can be downloaded from

www.nice.org.uk//CG053

Petition to the Prime Minister

by Konstanze AllsoppAs a long-term ME sufferer, I have decided that there is a way to make my voice count. My husband and I have started a petition to the Prime Minister to force NICE and other concerned bodies to accept the WHO classification of M.E. as a biomedical disorder. It may only be a small thing but over 200,000 patients, their families and carers DO have a voice.

To sign the petition go to: http//petitions.pm.gov.uk/ME-is-real/

To date I believe there has been around 3660 signatures, so please get all friends, relatives and colleagues (and their friends, colleagues and relatives)
to help this on by signing up

Deadline is 28th January 2008 - so there is plenty of time for you sign

Invest in ME - the Journal of IiME

(Article forwarded by Duncan Cox- 7th May 2007)

Invest in ME are now publishing the Journal of IiME. This first publication served as our International ME/CFS Conference 2007 conference brochure and delegates at the conference will have found a copy in their conference packs.

Containing articles by researchers, news from different countries and information and experiences of life with ME we hope to supplement our free newsletter with this publication and we hope to publish four times per year.

http://www.investinme.org/Documents/Journals/Journal%20of%20IiME%20Vol%201%20Issue%201.pdf

Invest in ME Charity Nr. 1114035

http://www.investinme.org/

In our first issue we have an article from the head of the UK Medical Research Council, Professor Colin Blakemore, on the strategy of the MRC. We also have articles by Dr. Ellie Stein, Professor Leonard Jason, Dr. Vance Spence and Dr. Neil Abbot from ME Research UK and from Jane Colby.
True stories and the status of ME around the globe are also provided.

We also have an invaluable glossary of Information on ME/CFS which has been prepared by Margaret Williams.

The journal is free from Invest in ME.

To view and download the Journal of IiME please use this link - Journal of IiME

http://www.investinme.org/Documents/Journals/Journal%20of%20IiME%20Vol%201%20Issue%201.pdf

ME Awareness Week

Interview With Dr Vinod Patel (Group Patron)

Dr Vinod Patel

Duncan Cox has been kind enough to allow a recent interview to be posted here. This interview with Dr Vinod Patel, Lead Clinician, CFS/ME Clinic, Nuneaton, was conducted via e-mail by Duncan Cox, Co-ordinator of Warwickshire Network for M.E. during September/October 2006.

" Dr Patel is a Consultant Physician in Diabetes & Endocrinology and Reader in Clinical Skills at Warwick Medical School. As many of you will already be aware he is also the lead clinician at the CFS/ME clinic, based at the George Eliot Hospital, Nuneaton and recently he kindly agreed to answer a few questions on the role of the clinic and the services being provided.

How did you first become interested in ME/CFS?

I first became interested in Chronic Fatigue Syndrome / ME when I was working at the Hammersmith Hospital in London. Professor Pinching used to work there as well and he had an interest in this condition and it was clear that Chronic Fatigue Syndrome / ME did not fit into any classical, neurological, psychological, or endocrine disorder. As such I feel it to be at the cutting edge of what is being discovered in medicine.

What's your understanding of the disease process in ME/CFS? Do you think that more than one illness is included under the spectrum of the 'syndrome'?

My understanding of the disease process is that there are problems with various bio-rhythms. These can be predominantly endocrinological which can then effect neurological and even psychological function. I certainly think that there is more than one cause of Chronic Fatigue Syndrome. For example is it difficult to know exactly, what effect a viral illness can have on the many hundred's or so structures in the brain and exactly what their physical and psychological effect would be.

Is knowing what particular trigger led to your illness important?

Knowing which particular trigger led to the illness can be important because it will help understand the time period from when the patient deteriorated. It will also help avoid certain conditions which can make the illness worse, such as repeated viral illnesses or even marked exertion, physical or psychological.

The Canadian Guidelines for ME/CFS have been adopted by a number of the ME charities and have recently been endorsed by neurologist Professor Leslie Findley of the National ME Centre. With the approval and help from local primary care trusts we have sent copies of "A Clinical Case Definition and Guidelines for Medical Practitioners" to all GPs in Warwickshire. Certainly the doctors we have spoken to seem to have been suitably impressed - do you propose to use these diagnostic criteria in the ME/CFS clinic?

I would be entirely happy to use this diagnostic criteria in our clinic. Currently we are using the Fukuda Criteria but will be adopting the Canadian guidelines, hopefully over the next few months.

What are the priorities of your local multi-disciplinary team?

The main priorities of our local multi-disciplinary team is obviously to provide support for our patients and with treatment, to get as many as possible better. We hope to work closely with our patients, as such our service is attuned to the specific needs of our patients rather than following protocols blindly that may not
help our patients.

Are there any particular drug treatments that you find helpful in managing this illness?

We use many drugs in the management of chronic fatigue syndrome and these are often tailor made to the needs of the patient. A few examples would be as follows;

• Melatonin to improve good quality sleep
• Sertraline for fatigue symptoms with depression
• Low dose Amitriptyline at night to help with neuropathic type pains
  
• Gabapentin for atypical pain throughout the day and with muscle jerks for example

Do you think there is an over-emphasis on the role of CBT in managing ME/CFS?

With respect to CBT this is the only evidence based treatment we have for ME/ Chronic Fatigue Syndrome and therefore I do not think there is over emphasis, indeed, there is lack of provision for adequate CBT for the vast majority of our patients. However it will not work in all patients.

What services can you offer the severely affected and housebound?

With respect to the severely effected and house bound we will try and visit but this will prove to be extremely difficult. This is purely because of the amount of resources that we have. For example, to see one patient at home would take 90 mins to 2 hrs and during this time we would be able to see at least 4 - 5 patients in the clinic. We will of course try to improve our service if at all possible.

What services are you able to provide at the clinic for children and young people with ME/CFS?

Currently we have an Endocrinologist that is interested but she is on maternity leave, and coming back soon. I would therefore say that there are normal out-patient appointments for children with chronic fatigue syndrome and young people will be assessed, either as an adult or as a child and then seen jointly in our monthly endocrinology clinic which currently mainly has patients with diabetes. There would be no specific clinic alone for children and young people for the time being at least.

Although the World Health Organisation classify M.E. as a neurological illness, many people with ME/CFS, still seem to have problems accessing appropriate benefits - are you able to offer patients any support with this?

Benefits is an extremely difficult problem to address. As you are probably aware I look after at least 2000 patients with diabetes, probably a few score with cancer and all these patients have a great deal of difficulty accessing benefit as well. The problem with ME/ Chronic Fatigue Syndrome is that there is no specific test that we can use to diagnosis it and society has difficulty accepting "healthy looking people" needing benefit. Our team aims to be as supportive as possible within the remits of what is allowed and one of our policies would be to forward the activities of daily living for social security and benefits agencies for them to decide whether they are happy to accept the evidence or not.

The questionnaire issued by the clinic to new patients seems to contain a number of "standard questions" that have an over-emphasis on fatigue and concentration problems and less on some of the other debilitating symptoms?

The questionnaire does contain a lot of standard questions but this is mainly because this is part of the minimum data set that the Department of Health, chronic fatigue syndrome service wanted. We will be entirely happy to adopt other questionnaires and we would very much hope that the ME support group would be able to give us further advice on this.

ME Research UK (MERGE) recently distributed a short DVD featuring a presentation by Dr Vance Spence, outlining latest biomedical research findings and the difficulties in researching the illness. We know that several copies were sent to staff at the ME/CFS clinic and wonder what your views are on MERGE research findings to date?

I have not had a chance to see the DVD as yet but I do look forward to looking at it and keeping it with the literature. My best source of evidence will usually be good quality randomised - controlled trials.

Are you involved with any ME/CFS research of your own?

With respect to my own research, I will be carefully auditing our findings in our patients with Chronic fatigue syndrome/ME particularly the endocrine investigations such as thyroid status, adrenal function, glucose levels and calcium. As an Endocrinologist this is my main area of expertise and interest.

We understand you are involved with the Warwick Medical school - what, if anything, is being taught about ME/CFS there?

With respect to Warwick Medical School an exciting possibility over the next two years would be a link with the University of Aston where we may be in a position to do some detailed Neurophysiological studies of patients with Chronic Fatigue Syndrome /ME but this is early days at present.

What are your aspirations for ME/CFS services in Warwickshire over the next few years?

Our aspirations are to have an excellent service that our patients have confidence in where there is clear evidence of improvement for our patients. We also hope to grow together with the patient support group and to have a multi-disciplinary team that works well together. We would also hope to use treatments that are evidence based and also being supportive of any treatments if they are of benefit to our patients.

Thanks to Dr Patel for taking the time and trouble to answer these questions and providing a little further insight into the clinic."

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