Saturday, January 24, 2009

Test for CFS

Dr Sarah Myhill MB BS, Upper Weston, Llangunllo, Knighton, Powys, LD7 1SL

Tel: 01547550331 Fax: 01547550339 E-mail: office@doctormyhill.co.uk Website: www.doctormyhill.co.uk

20 January 2009

PRESS RELEASE

A TEST FOR CHRONIC FATIGUE SYNDROME /

MYALGIC ENCEPHALOMYELITIS (CFS/ME)

The International Journal of Clinical and Experimental Medicine has published on line details of a biochemical test which measures energy supply to body cells and therefore fatigue levels in people with Chronic Fatigues Syndrome/Myalgic Encephalomyelitis (CFS/ME). The scientific paper entitled 'Chronic Fatigue Syndrome and Mitochondrial Dysfunction' is available here http://www.ijcem.com/files/IJCEM812001.pdf, Int J Clin Exp Med (2009) 2, 1-16

For treating the fatigue of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis, doctors have been hampered by the lack of a good test. This scientific paper clearly shows that the fatigue of CFS/ME is a symptom of mitochondrial dysfunction. Mitochondria are the biochemical engines within every cell in the body, which supply energy to that cell. What is shown by this paper demonstrates that the more fatigued the patient, the worse is the mitochondrial dysfunction and vice versa. This means that we now have an objective measure of energy supply and therefore a test for one immediate cause of CFS/ME

This test has resulted from the brilliant and pioneering work of the internationally recognised Dr John McLaren-Howard of Acumen laboratories. He has taken cutting edge research biochemistry and applied them to the clinical conundrums thrown up by the illness known as CFS/ME.

This test can help distinguish between those people fatigued because of a biochemical problem in their mitochondria and those who are fatigued for other reasons. Other reasons include dietary causes (allergy and carbohydrate intolerance), hormonal reasons (such as borderline thyroid and adrenal function), poor antioxidant status, chronic insomnia, psycho-social causes such as anxiety and other causes.

Many doctors are already using this test and hundreds of patients are already taking the necessary nutritional supplements to support mitochondria. Many of these doctors and patients have observed significant clinical improvements. For some their health is so much improved that they have been able to lead normal lives and return to the workplace.

Dr Myhill, one of the authors of the paper, says "This test represents a huge breakthrough in the diagnosis and management of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis. This illness has already been classified as a neurological disease by the World Health Organisation under ICD 10 G93.3, but many doctors continue to treat CFS/ME as if it were a psychological condition. This has been enshrined in NICE Guidelines for treating CFS/ME because their recommendations are for psychological treatments including antidepressants, cognitive behaviour therapy and graded exercise therapy. This is completely inappropriate for patients who have mitochondrial pathology and indeed is likely to make the mitochondrial pathology even worse.

"A useful analogy is to compare your body with your car. The mitochondria represent the engine of that car, the diet represents the fuel that goes in the tank, the thyroid gland represents the accelerator pedal and the adrenal gland the gearbox of that car. Using cognitive behaviour therapy or graded

exercise to treat a patient with CFS/ME is akin to beating up the driver of the car when actually the car needs a re- conditioned engine, suitable fuel in the tank, resetting of the accelerator pedal, a new gear box or whatever. This test invalidates the psychological model of CFS/ME and clearly establishes this illness as having a physical basis. Sufferers of CFS/ME have known this for many years but now we have the biochemical basis to prove this.

"This study clearly shows that CFS/ME has a physical basis with the potential for correction through physical and biochemical interventions. Clinical experience has shown that the package of supplements to support mitochondrial dysfunction is effective and this will be the subject of further studies."

THE AUTHORS OF THE STUDY



Dr John McLaren-Howard is seen here receiving the Maberley Medal from the British Society for Ecological Medicine for his outstanding laboratory work in the field of Nutritional and Environmental Medicine. It is his brilliant work and skills which have made this research possible. He has developed many known biochemical research techniques and pioneered new tests for investigation of patients with fatigue syndromes and related disorders. These have proved vital in ascertaining the cause of disease. The ATP profile featured in this scientific paper is just one example of many cutting edge research tools which he has applied to establishing disease causation.

Dr Norman Booth is a retired physicist from Mansfield College, Oxford University. Dr Booth has been responsible for ensuring the necessary academic rigor to ensure publication in this scientific journal. He prepared all the necessary graphs and illustrations which clearly show the relationship between mitochondrial function and levels of fatigue

Dr Sarah Myhill is a clinical doctor with a special interest in the treatment of chronic fatigue syndrome/ME. She was responsible for collecting the original data from her patients, and from the biochemical tests, and noticing a relationship between the two.

We are all especially grateful to those CFS/ME patients and non-patients who all co-operated fully without whom none of this would have been possible.

- ENDS -

For further information, please contact

Dr Sarah Myhill, Telephone 0154755033 Email office@doctormyhill.co.uk

Dr Sarah Myhill MB BS, Upper Weston, Llangunllo, Knighton, Powys, LD7 1SL

Tel: 01547550331 Fax: 01547550339 E-mail: office@doctormyhill.co.uk Website: www.doctormyhill.co.uk

The cost of the Mitochondrial Function Profile, which will now include the mitochondrial function studies (ATP profiles), levels of Co-enzyme Q10, glutathione peroxidase, zinc copper SODase, manganese SODase and extracellular SODase together with NAD levels and cell-free DNA is £195, plus £50.00 for the letter of interpretation to the GP.

John McLaren Howard now has specialist equipment to refine these tests further, particularly in respect of oxidative phosphorylation.

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The use of practice nurses in the management of ME/CFS

Abstract | Practice Nurses' views of their role in the management of Chronic Fatigue Syndrome/Myalagic Encephalitis: a qualitative study: "Practice Nurses' views of their role in the management of Chronic Fatigue Syndrome/Myalagic Encephalitis: a qualitative studyPractice Nurses' views of their role in the management of Chronic Fatigue Syndrome/Myalagic Encephalitis: a qualitative study"

Abstract (provisional)
Background
NICE guidelines suggest that patients with Chronic Fatigue Syndrome/Myalgic Encephalitis (CFS/ME) should be managed in Primary Care. Practice Nurses are increasingly being involved in the management of long-term conditions, so are likely to also have a growing role in managing CFS/ME. However their attitudes to, and experiences of patients with CFS/ME and its management must be explored to understand what barriers may exist in developing their role for this group of patients. The aim of this study was to explore Practice Nurses' understanding and beliefs about CFS/ME and its management.

Methods
Semi-structured interviews with 29 Practice Nurses. Interviews were transcribed verbatim and an iterative approach used to develop themes from the dataset.

Results
Practice nurses had limited understanding about CFS/ME which had been largely gained through contact with patients, friends, personal experiences and the media rather than formal training. They had difficulty seeing CFS/ME as a long term condition. They did identify a potential role they could have in management of CFS/ME but devalued their own skills in psychological intervention, and suggested counselling as an appropriate therapeutic option. They recognised a need for further training and on going supervision from both medical and psychological colleagues. Some viewed the condition as contentious and held pejorative views about CFS/ME. Such scepticism and negative attitudes will be a significant barrier to the management of patients with CFS/ME in primary care.

Conclusions
The current role of Practice Nurses in the ongoing management of patients with CFS/ME is limited. Practice Nurses have little understanding of the evidence-base for treatment of CFS/ME, particularly psychological therapies, describing management options in terms of advice giving, self-help or counselling. Practice Nurses largely welcomed the potential development of their role in this area, but identified barriers and training needs which must be addressed to enable them to feel confident managing of patients with this condition. Training must begin by addressing negative attitudes to patients with CFS/ME.

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Tuesday, January 13, 2009

Judicial Review NICE Guideline for CFS/ME London UK February

How to help:

On February the 11th & 12th, there will be a Judicial Review into
the NICE Guideline for CFS/ME at the High Court in London

It's only a month until then!


I've had a lot of emails from people asking what they can do to help.
Here are some ideas.


Come to court for one or both of the days. Turning up for the
judicial review will make a difference.


* Have you contacted your local group leader to see if other
people are going? It may be possible to get a ride to London from
other people in your support group.

* Why not hire a mini-bus or people carrier for one or both of
the days and organise people from your area?

* Have you checked to see if there are any cheap rail fares to
London for one or both days?

* Have you booked a hotel for a night or two?

* Can you offer a seat to someone else from your area? Contact
your local group and see who would like to come with London with you.


Information on transport, parking and hotels around the Royal Courts
of Justice and Hotels can be found in this website


http://www.nicemecourt.co.uk/The_High_Court.htm

(look on the right hand column under "Hotels and Parking")


If you cannot get to the hearing why not help your local group
organise transport, parking or accommodation for those who need it.


* You could also consider making a donation to send other people.

* Do you have a family member who could attend the court to
represent you? If they need to ask for leave (from work) they may
need to do so now. Even if they can "only" come to the court for a
morning or an afternoon it will help.

* Can you offer a bed for the night for people travelling to London

* Can you act as a Steward on one of the days (to help people
find their way who are coming to the court)


Please do not hesitate to contact me on this address if you can help
out at all. We really do need all the help we can get to make this a success.


contact@nicemecourt.co.uk


Kindest regards to all from,

Annette Barclay

(unofficial Supporter of the Judicial Review)

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Saturday, January 10, 2009

Finally!

My GP says I definitly have chronic fatigue syndrome! Plus as my mood is ok, not depressed, to cut down the main antidepresent, Mirtazapine, to see if that relieves some of the extreme fatigue. More blood tests Monday to check thyroid function and the usual range of levels. Am to go back in a month to see how mirtazapine change going - but a great breakthrough finally.

A number of events led me to write out my symptoms, how they affect me and what I try to do to have some quality of life. At a regular job centre interview they assumed my main problem is anxiety, at the colonoscopy clinc that I have COPD - tests last year showed lung function fine - plus being treat as a moron by various consultants, I thought WTF is going on here???? So this is what I wrote:

"Reason for visit: to review all symptoms rather than consult re individual symptom flare up with the goal of improving overall health in order to improve my quality of life which is currently very poor.

For example if I add one extra activity to usual routine such as changing the bed I end up semi-comatose by 6pm unable to keep eyes open, too tired to cook, think etc etc rarely leave house for anything apart from shopping, coffee at the Café is a rare treat. Would love to be more active, develop friendships, and consider work eventually. Now I am sometimes even too tired and incoherent to chat online with my daughter- without a drink in sight!

Symptoms - worst first

Fatigue - physical and mental
Example – emulsioned one wall to finish living room before Xmas, took a full week of short sessions as could not sustain activity more than ½ hour first day reducing over subsequent days. Meant no energy for cooking.
Brain fog, struggle for words - names especially. Bad days unable to start Guardian crossword (when at Uni was reknowned for completing in under 5 mins) or string sentences together. Very poor at dates.

Cough, mucous, post nasal drip – pretty bad, using mountains of toilet roll though mucous is clear unlke hay fever runny nose.

Irritable bladder – frequency and urgency, very noticeable on a morning. Fizzy wee

IBS – stopped mebeverine after phone consultation, back on this week as pain, wind, diarrhoea back

Headaches - migraines, mainly visual & pain left temple/ eye, weird semi anaesthetic numb ache/ hot sensation same area. Temperature type headache. Poor sleep headache.

Muscle/ joint pain - feels like layer under skin bruised

Blurred vision – with and without headache, worse when tired.

Noise & light - rattle my brain. E.g. Oncoming dipped headlights a big problem. Increased sound on adverts hurt.

Sleep – nortryptaline helped immensely but still wake 5 or more times a night, wake tired and unrefreshed.

Mood – OK, had a few very low weepy, irrational days in Dec but ate cows cheese 4 days running (craving) – stopped cheese, ok within 2 days.

Faulty “thermostat” – hot when other cold and vice versa. Extreme clothes & bed drenching sweats as mentioned last visit stopped after antibiotics.


Weird stuff

Tight, uncomfortable band at top of stomach, pushing up under ribs esp right side. Worse after eating, however little.

Arms & legs gone very thin, Susie calls me chicken legs now. Stomach distended.

Eyebrows & pubic hair disappearing, bit young for this?

Eyelids discoloured brown – used to them being black

No libido
Salt craving

My coping strategy

Pace myself

Stay mentally active – horse racing website in hope of online work again in future. Crosswords, scrabble, read though can now take weeks to finish one book compared to previous prodigious consumption.

Diet – dairy free – doing this in 199? Was turning point for extreme IBS etc. All home cooked, bulk cook and freeze when can for days when cannot cook.

Goal set - not greatest lover of housework but try to add an additional job that will give sense of satisfaction. Eg today cleared leaves off path for for 10 mins by the end could barely llift leaves into compost bin.

Exercise – introduction (approx 12 mins) to old aerobics video 2 –3 times a week, any more and wake up feeling like flu starting next day. Walk - length of High St often about the limit before feels like wading through treacle.

Try not to go back to bed in the day

No alcohol week days.

Cut down smoking

Note: I think I was able to lead a normal life until 1991 despite severe migraines (full blown 2/3 days dark room/sick jobs) and IBS.

Possible turning points: 1990 I sat my finals at Durham, GP prescribed beta-blockers to avoid migraines disrupting them, passed 2.1 BA Hons. Awarded Durham studentship for postgrad degree. Autumn term strange red raised rash bottom both legs, unnamed virus diagnosed. Wading through treacle feeling and extreme fatigue started, I told GP thought I was depressed did then become suicidal & hospitalised and have only had some short periods of feeling well since then. "

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Tuesday, January 06, 2009

M.E. Resolutions

I intend getting in touch about a donation button and the contact/support offered as cannot find these on the website. .

January 2009: ME Free For All: "M.E. Resolutions"
[A version of this letter appeared as Battle to beat 'yuppie flu' in the Bristol Evening Post, 5 January 2009]

Our primary resolution, in 2009, for people affected by M.E. (Myalgic Encephalomyelitis) is to render "Yuppie flu" as extinct as the dodo.

We resolve to make people more aware of this dreadfully disabling illness, not just once a year, on M.E. Awareness Day in May, but on every one of the other 364 days, by properly educating people, who may have had no experience as a sufferer, carer, doctor, friend or neighbour, with the facts as we know them: that it is not mere tiredness; it is certainly not laziness or malingering, in people who were previously healthy and had a good work or school record but is a serious neurological illness with a range of symptoms of varying severity, including permanent muscle pain, cognitive dysfunction and dizziness, which "chronic fatigue" alone does not encompass and we'll show you how it devastates lives, isolates people, fractures relationships, breaks hearts and even takes life itself away from some poor souls. We shall no longer be slighted by ignorance.

We all agree that we need a definitive diagnostic test - perhaps a blood test or a scan - to identify M.E. as a distinct illness and that's our goal. Since there is no public funding to conduct crucial biomedical research, we are resolved to do it ourselves, for nothing but the willing, voluntary labour of those who have some background in research and the assistance of those who may not have any experience but are keen to help. We already have some members in our team, who are skilled in experimental design and statistical analysis but we want more people of all sorts - not only boffins and eggheads - committed to serious biomedical research that is so desperately needed.

In the meantime, we resolve to provide as much support for M.E. sufferers, especially those who are isolated and housebound. You can get in touch with us in every known way: write, e-mail, phone and, now, Skype, which is mushrooming, since we launched our service especially for Christmas. Skype is free to computer broadband users. It's easy to install from www.skype.com but if you can't work it out, contact us and we'll get you started. The basics are free but for less than £20, you can add a web cam and let people see you (unless you're having a bad hair day!) and you can switch it off whenever you want. You can talk about anything you like, including this awful illness, or about any problems, such as benefits, with people who understand because they're in the same boat. If you haven't got much of a voice yourself, or feel out of your depth, with doctors or civil servants and need someone to speak for you, we'll find someone to help you through it. There'll be time for some fun too.

We'll also tell you straight what are the best things, in our experience and in the light of reliable research, to do and whether you should avoid certain treatments and questionable advice, which may do you no good, might even make you worse and will almost certainly make you poorer for no benefit to your health.

These are our resolutions for 2009 and will be for every year until we succeed, on behalf of hundreds of thousands of people in this country and millions throughout the World.

If you can help us in any way - with administration, computer work, the research, advocacy, being a listening ear, making the tea, or anything else we could use - or if you are one of the people who needs the help, get in touch today and make our resolutions become reality.



Yours sincerely

Dr John H Greensmith

ME Free For All. org

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Childhood trauma associated with chronic fatigue syndrome

Childhood trauma associated with chronic fatigue syndrome:

Childhood trauma associated with chronic fatigue syndrome
January 5th, 2009 in Medicine & Health / Diseases
Individuals who experience trauma during childhood appear more likely to develop chronic fatigue syndrome as adults, according to a report in the January issue of Archives of General Psychiatry, one of the JAMA/Archives journals. In addition, neuroendocrine dysfunction—or abnormalities in the interaction between the nervous system and endocrine system—appears to be associated with childhood trauma in those with chronic fatigue syndrome, suggesting a biological pathway by which early experiences influence adult vulnerability to illness.


Chronic fatigue syndrome affects as many as 2.5 percent of U.S. adults, according to background information in the article. Little is known about the causes and development of the condition. Risk factors include female sex, genetic predisposition, certain personality traits and physical and emotional stress. "Stress in interaction with other risk factors likely triggers chronic fatigue syndrome symptoms through its effects on central nervous, neuroendocrine and immune systems, resulting in functional changes that lead to fatigue and associated symptoms such as sleep disruption, cognitive impairment and pain," the authors write. "However, obviously not every individual exposed to a stressor goes on to develop chronic fatigue syndrome, and it is therefore of critical importance to understand sources of individual differences in vulnerability to the pathogenic effects of stress."

Christine Heim, Ph.D., of Emory University School of Medicine, Atlanta, and colleagues studied 113 patients with chronic fatigue syndrome and 124 healthy individuals who served as controls. Participants—who were drawn from a general sample of 19,381 adults residents of Georgia—reported whether they had experienced childhood trauma, including sexual, physical and emotional abuse or emotional and physical neglect. They also underwent screening for depression, anxiety and post-traumatic stress disorder and were tested for levels of the hormone cortisol in their saliva. Low levels may indicate decreased function of the body's main neuroendocrine stress response system, the authors note.

Individuals with chronic fatigue syndrome reported higher levels of childhood trauma—exposure to trauma was associated with a six-fold increase in the risk of having the condition. Sexual abuse, emotional abuse and emotional neglect were most closely associated with chronic fatigue syndrome. Patients with the syndrome also were more likely than controls to have depression, anxiety and post-traumatic stress disorder.

Cortisol levels were decreased in patients with chronic fatigue syndrome who experienced childhood trauma, but not in those with chronic fatigue syndrome who had not been subjected to trauma. Therefore, stress early in life may cause a biological susceptibility to chronic fatigue syndrome, the authors note.

"Our results confirm childhood trauma as an important risk factor of chronic fatigue syndrome," they write. "In addition, neuroendocrine dysfunction, a hallmark feature of chronic fatigue syndrome, appears to be associated with childhood trauma. This possibly reflects a biological correlate of vulnerability due to early developmental insults. Our findings are critical to inform pathophysiological research and to devise targets for the prevention of chronic fatigue syndrome."

Source: JAMA and Archives Journals

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