Marys Medicine

Koru february 2014

Mi
KORU ME Support Group
HAMILTON February 2014 Issue 30 "And now we welcome the New Year,
Full of things that have never been."
Rainer Maria Rilke
New Year's greetings everyone, 2014 is well underway now with a start up of the year's activities. For some, a new year is no more than a change of a calendar. For others, the New Year symbolizes the beginning of a better tomorrow, and a new chapter in their lives. For many people a new year will inspire them to make resolutions, but despite good intentions, they are frequently broken! Often resolutions are centred on achieving better results or accomplishing more. Many people with ME/CFS and FM tend to be perfectionists and their self-esteem is tied in with their sense of achievement. Their typical goals for New Year are often unrealistic. Richard Eyre, in his book, ‘Don't Just Do Something, Sit There', argues that the traditional thinking about self improvement is out-dated or inaccurate. He feels we need new paradigms to ‘reflect our world as it really is, and our lifestyles as they really ought to be.' This is especially true for people with chronic illness. He thinks perhaps we need to rethink these annual goals and look to the New Year with a spirit of ‘anti-resolutions'. This means ‘releasing ourselves from the obligation of things we are not able to do and consider alternatives more supportive of healing and well-being'. He calls it ‘The art of letting go'. For example the goal ‘I will manage my time better so I can do more' can become ‘I will pace myself to allow for rest and recovery'. There is a healing value in ‘letting go'. Definitely food for thought! We ended the year in December with our Support Group Christmas lunch. There was a very good turn out to enjoy lots of fun, food and conversation. The Metropolis caterers really excelled themselves providing a wonderful spread, including several lovely platters for those on special diets. Thanks to all those who helped clean up afterwards. You'll notice a few changes to the Koru layout. The upcoming meeting details are on page 5. Our
first meeting this year is on February 13th. Kylie Phillips, from Phillips family Chiropractic, will
be discussing ways to reduce stress - something we all need to do in our lives! Let me know if you
would like the calendar for this year's support group meetings.
Please feel free to contribute to Koru if you have something you'd like to share or something that might help others. Till next time, take care of yourselves, Helen Pg 2 Mindfulness Cognitive Behavioual Therapy Pg 3 Historical Background of Fibromyalgia Pg 4 Cognitive Disfunction in CFS/ME Pg 5 Superfoods & Upcoming Meetings Vern McLellan Pg 6 Resources available

MINDFULNESS COGNITIVE BEHAVIOURAL THERAPY

I was very disappointed to miss the talk by Jo Wall at the October meeting when I was away, as I
know mindfulness can be a really useful tool, and I wanted to learn more about it. Grateful thanks
to my colleague, Liz Hogan, for taking the meeting for me. Jo is an occupational therapist and
counsellor, and has a special interest in Mindfulness Therapy. The following are some of the notes
about it that Jo left with Liz.

WHAT IS MINDFULNESS? Mindfulness is an ancient eastern practice which is very relevant for our lives today. Mindfulness is a simple concept. It means paying attention in a particular way: on purpose, in the present moment, and non-judgementally. (Jon Kabat–Zinn). Mindfulness doesn't conflict with any beliefs or traditions, whether religious, cultural or scientific. It is simply a practical way to notice thoughts, physical sensations, sights, sounds, smells, – anything we might not normally notice. The actual skills might be simple, but because it is so different to how our minds normally behave, it takes a lot of practice. We might go out into the garden and as we look around, we might think "That grass really needs cutting, and that vegetable patch looks very untidy". A young child, on the other hand, may call over excitedly, "Hey – come and look at this ant!" Mindfulness can simply be noticing what we don't normally notice, because our heads are too busy in the future or the past – thinking about what we need to do, or going over what we have done. It might simply be described as choosing and learning to control our focus attention. MINDFULNESS BREATHING: The primary focus in Mindfulness Meditation is the breathing. However the primary goal is a calm, non judging awareness, allowing thoughts and feelings to come and go without getting caught up in them. This creates calmness and acceptance.
Sit comfortably, with your eyes closed and your spine reasonably straight.
Direct your attention to your breathing.
When thoughts, emotions, physical feelings or external sounds occur, simply accept them, giving them the space to come and go without judging or getting involved with them.
When you notice that your attention has drifted off and is becoming caught up in thoughts or feelings, simply note that the attention has drifted,, and then gently bring your attention back to your breathing. It's OK and natural for thoughts to arise and for your attention to follow them. No matter how many times this happens, just keep bringing your attention back to your breathing. USING MINDFULNESS TO COPE WITH NEGATIVE EXPERIENCES When we are more practiced in using Mindfulness, we can use it even in times of intense distress, by becoming mindful of the actual experience as an observer, using mindfulness breathing and focussing attention on the breathing, listening to the distressing thoughts mindfully, recognising them as merely thoughts, breathing with them, allowing them to happen without believing them or arguing with them. If thoughts are too strong or loud then attention can be moved to the breath, the body, or to sounds around us. For further information ring 021 2665657, email Jo at [email protected] or go to Jo's website: www.actcouncelling.co.nz STRESSED AND ANXIOUS?! For those interested and able, Jo is doing a 6 week night class at Fraser High School in February. It's "full of practical tools and techniques for dealing with stress, worries and fears; including mindfulness skills." Cost is $50.00. Enrol at www.fraserace.ac.nz or phone the above number.

LAUGHTER IS THE BEST MEDICINE!!!! A chuckle a day keeps the doctor away! THE HISTORICAL BACKGROUND OF
Despite this progress, the typical patient with fibromyalgia has seen an average of 15 Did you know?
physicians and has had the condition for Although fibromyalgia was not defined until approximately 5 years before receiving a the late 20th century, it was discovered much correct diagnosis. More than 50% of cases are earlier. Descriptions in the literature date as misdiagnosed, and many patients undergo far back as the early 17th century.
treatments that provide little benefit. Until recent decades, many physicians questioned the existence of fibromyalgia. At some point, most patients have been told Over time, however, a growing body of that nothing is medically wrong with them evidence established FM as a syndrome and that their condition is imaginary. comprising a specific set of signs and Therefore many patients become frustrated and sceptical. Although most patients are relieved when a correct diagnosis is made, the In 1987, the American Medical Association, patient may need to be convinced that the (AMA) acknowledged fibromyalgia as a true physician actually knows what is wrong and illness and a potential cause of disability. has formulated a treatment plan. Many well-respected organisations such as the AMA, the National Institutes of Health NOMENCLATURE

(NIH), and the World Health Organisation Although the syndrome has been known by (WHO), have accepted FM as a legitimate other names, the term fibromyalgia was clinical entity. introduced in 1976. This word is derived from the Latin root fibro (fibrous tissue) and the
Before 1990, no guidelines for evaluating and Greek roots myo (muscles) and algos (pain).
Previously, fibromyalgia was most commonly misdiagnosis and confusion the American described fibrositis; this was a misnomer, as College of Rheumatology sponsored a "itis" indicates an inflammatory component. multicenter study to develop these criteria; the Chaitrow asserts that no inflammatory process results were published in 1990. In 1992, at the has ever been found to be part of this disease. Second World Congress on Myofacial Pain and Fibromyalgia, the diagnostic criteria for Author: John Buckner Winfield MD Reference: fibromyalgia were expanded and refined. Medscape. Drugs, Diseases and Procedures COGNITIVE DYSFUNCTION IN CFS/ME

carnitine, the more cognitive difficulties there From Dr Charles Lapp's Hunter-Hopkins are. Supplementing with carnitine seems to Centre newsletter - October 2013 improve thinking, concentration and memory. Cognitive problems have been cited as one of the most disruptive and functionally disabling So what can be done to improve cognition?
symptoms of CFS, with up to 85% of patient's First of all, try to stimulate and exercise your reporting impairments. Most affected are mind. Consider jigsaw and crossword puzzles, attention, concentration, memory, calculation, word games, card or board games, and computer and processing speed. These lead to such as games. Numerous mind-stimulating websites word searching, losing the train of thought, are available also, such as www.luminosity.com whose authors have a special interest in CFS. difficulty with mental math, brief periods of Certain supplements have shown promise as
confusion or disorientation, and foolish errors, well, most notablycarnitine or acetyl-carnitine at such as putting milk in the closet instead of the 1000mg/day. These are available over the refrigerator, or leaving the stove running. counter or by prescription. Ginko biloba (over Many PWCs can be easily distracted, and will the counter) has been touted to increase cerebral go from one task to another, never completing blood flow and improve mentation, and many practitioners recommend supplementation with Testing for cognitive difficulties doesn't phosphatidyl serine. always correlate with a person's day to day Defects in folate and B12 metabolism have been complaints, however. Firstly testing is not very sensitive or specifically directed at CFS- related complaints, so the right tests must be methylcobalamin 1000mcg to 5000mcg daily) administered in order to get results. Secondly, and methylfolate (400mcg daily) may be very intellectual patients show relatively little prudent. More potent prescriptions are available decline. For example, a person with a very such as Deplin (15mg of methylfolate) Mentax high IQ 140 say, may drop 30 points to an IQ (3mg methylfolate/2mg B12, N-acetyl cysteine of 110; however this is still above average. So the PWC notes a significant decline in ability, but an examiner would testify that this Recently pharmaceutical companies have been individual should have no problems developing products that claim to improve cognition in a wide variety of conditions, Neuropsychological testing is not the only way including Alzheimer's disease. These products to demonstrate cognitive deficits. Cranial include Vayacog (omega-3 fatty acids 26mg + MRIs show UBOs or Unidentified Bright Objects of inflammation in the brains of up to alternative energy source that the brain can use 80% of our PWCs. PWCs with UBOs report instead of glucose, 40gm twice daily), Procera being more physically impaired than those AVH (acetyl-carnitine & vinpocetine + without brain abnormalities. huperzine), and Prevagen (a jellyfish extract that SPECT scanning can reveal decreased blood flow in key areas of the brain such as temporal prescriptions. Unfortunately we are not aware lobes, amygdala, hippocampus, and midbrain, that any of these have undergone rigorous study while PET scanning may display areas of researchers have shown that cerebral volume is undergone brief trial in PWCs, including reduced in PWCs with the most severe galantamine (Razadyne), donezepil (Aricet), deficits. Surprisingly such ‘brain shrinkage' and memantine (Namenda). In brief summary can be prevented or reversed by physical some PWCs will respond to these medications, but no subset of responders has been identified, Finally, Japanese studies have confirmed that and most do not respond. In general we do not body levels of carnitine or acetyl-carnitine recommend these medications unless dementia correlate with cognitive deficits. The lower the unrelated to CFS/ME is suspected.

tumours, particularly in the lungs. It's these oils WORD FOR THE DAY
that can neutralize certain types of carcinogens. Expressing gratefulness during personal It is also loaded with vital nutrients, vitamins C, adversity like loss or chronic illness, as hard K, and iron, potassium, folate, iodine, and as it might be, can help you adjust, move on oxygenating chlorophyll. and perhaps begin anew. AVOCADO: One of the most nutrient dense
Sonja Lyubomirsky foods, they top the charts among fruits for folate, potassium, Vitamin E, and magnesium. Thanks to Colleen who sent this in. It arrived in her They are high in fibre and a rich source of the inbox on Christmas Day and she thought it was very monosaturated fat called oleic acid, which is timely and appropriate. If you would like to receive a heart friendly and may help lower cholesterol. ‘Word for the Day' quote, check out: www.gratefulness.org/word/index.htm They're also high in Vitamin C, iron, and antioxidants. What a powerhouse! PUMPKIN SEEDS: NZ pumpkin seeds are a
SUPERFOODS
smooth, silky seed that deserves high marks. It's Noun: A nutrient dense food, naturally high in well known for its high levels of zinc which vitamins, minerals and antioxidants; easily boosts the immune system and energy levels, as absorbed by the body and beneficial for health and wellbeing. well as supports the prostate. This super seed BLUEBERRIES: A superstar of superfoods
contains numerous other minerals such as these deep purple berries contain high magnesium, manganese, iron, copper, and concentrations of antioxidant and anti- inflammatory compounds. Low in calories, yet monosaturated fat omega fatty acids 3 and 5, high in Vitamin C and potassium, they are Vitamin E and folate. good for the immune system, heart, eyes and If you haven't included these foods in your diet
urinary tract. Also a great source of fibre, then it's time to get started!!!
something we all need plenty of. Both fresh From the ‘Chantal Food Flyer' newsletter – a Napier based supplier of natural and organic food and health and frozen berries give you this power packed products. GREENS: Deep green KALE contains the
UPCOMING SUPPORT MEETINGS
highest levels of antioxidants of all vegetables and is a remarkable source of Vitamin C. It FEBRUARY 13th Education Meeting
also contains calcium, iron (paired with the 10.30 -12md, Methodist Church, Crn Bader St vitamin C needed for high absorption), & Normandy Ave, Melville selenium, magnesium, carotenes, (protects eye Speaker: Kylie Phillips: ‘Dealing with Stress'
sight) and Vitamin E (for youthful skin and FEBRUARY 25th Social Group
cognitive brain function.) 2pm Hollywood Café Westfield shopping SPINACH: is an excellent source of folate
Centre, Chartwell (the natural form of folic acid, vital at conception and in pregnancy for DNA and cell growth), and packed with antioxidant action, MARCH 13th Education Meeting
carotenes, Vitamin K (great for bone strength), 10.30 -12md, Methodist Church, Crn Bader St peptides (shown to lower blood pressure) and & Normandy Ave, Melville Speaker: Michelle Peat from the Health
ROCKET: fuels our bodies with loads of
Consumer Service will discuss Patient's Rights phytochemicals, antioxidants, vitamins and and how to make a complaint if need be. minerals. It's an excellent source of Vitamin MARCH 25th Social Group
A, beta carotene, Vitamins B, K, and C, folate, There is likely to be a change of venue. Please iron, calcium, iron/lutein (antioxidants for the check with Helen if you are intending to attend. PARSLEY: Known as the blood cleanser,
parsley is strongly antioxidant, and anti - "For every minute you are angry
coagulant. It contains certain volatile oils that you loose sixty seconds of
have been shown to inhibit the formation of happiness". Ralph Waldo Emerson

RESOURCES AVAILABLE
Chronic Fatigue Syndrome M.E.
Dr Rosamund Vallings (5 copies) DVDS - available to borrow
Understanding Irritable Bowel
(or buy for $10.00)
Syndrome Dr Kieran Moriarty
Client Services Co-ordinator ME/CFS Dr Vallings August 2010 talk Taking Charge of your Chronic
MS Waikato Trust Dr Nancy Klimas's Hamilton talk Pain Peter Abaci
Dr Vallings/Pain Management 2010 The New Zealand Gluten Free
Mobile:027 7771344 Dr Valling's IACFS/ME Conference Cookbook -food everyone can
PO Box146, Hamilton enjoy - Sophie Johnson Dr Valling'sInvest In ME conference The New Zealand Gluten-Free
June 2012 & May 2013 Cookbook - Jim Boswell
The Mindful Way through
LIBRARY BOOKS
Anxiety Susan M. Orsillo &
Recovery from CFS -50 personal
Lizabeth Roemer Northcote, North Shore, 0748 stories - Alexander Barton (2 copies) The Irritable Bowel Syndrome
Lost Voices– families living with ME
Solution Dr Stephen Wangen
With
–
Fibromyalgia and Myofascial
Christine Craggs- Hinton (3 copies) www.anzmes.org.nz Pain Syndrome A practical guide
to getting on with your life. Dr Chris Jenner Syndrome & Fibromyalgia - CD set
Dr Ros Vallings Auckland Fibromyalgia- simple relief
by Bruce Campbell Phone: 09 534 3978 for clinic booking. through movement
From Fatigue to Fantastic-
Stacie L. Bigelow JacobTeitlebaum 15 Natural Remedies for
The Hamilton ME Support Your Symptoms are Real- What to
Migraines and Headaches
do when your doctor says nothing is
Group operates under the J.S. Cohen MD real- Benjamin H. Natelson
umbrella of the MS Waikato The Great Physician's Rx for
FibroWHYalgia - Susan Ingebretson
Trust. MS Waikato offers Irritable Bowel Syndrome
The Chronic Fatigue Healing Diet -
Jordan Rubin support, advice and advocacy Christine Craggs-Hinton Healthier without Wheat – Anew
to those with ME/CFS & FM in Verity Red's Diary –A story of
understanding of wheat allergies, the Midland Health area. Surviving ME - Maria Mann celiac disease and non-celiac What Your Doctor Doesn't Know
gluten intolerance Disclaimer : Opinions about FM - L. Veilink and P. Rhodes
Dr Stephen Wangden expressed in Koru are those of Reviving the Broken Marionette -
The Whole-Food Guide to
the writer and not necessarily treatments for CFS ME and FM - Overcoming Irritable Bowel
those of the Hamilton ME Maija Havisto Syndrome Laura J. Knoff
Hope & Help for Chronic Fatigue
Support Group or MS Waikato Food Allergy Survival Guide
Syndrome & Fibromyalgia- Alison
Vesanto Melina Jo Stepaniak Dina Taking Control of TMJ - Robert
Healthy Eating for IBS
Sophie Braimbridge Contact others
The Patient's Guide to CFS &
The CFSID & Fibromyalgia
Fibromyalgia - Bruce Campbell
You may find it Self-Help Book A self
Sacred Space ME/CFS Depression,
Management Program for CFS Anxiety & Stress - Elizabeth Bailey
communicate with and FM by Bruce Campbell The
The Introvert Advantage - How to
others who also CFIDS / Fibromyalgia Toolkit A
thrive in an Extrovert World -Marti have ME/CFS or practical self-help guide Bruce
Olsen Lani FM, especially if Fibromyalgia and female sexuality -
you're feeling a bit down, or you may An introduction to the
Marline Emmal want to know how others manage. Lightening Process
Chronic Fatigue/ME - Support for
Thanks to those offering support. Phil Parker (3 copies - 2 family & friends - Elizabeth Turp
Please be aware that they will Fibromyalgia for Dummies- R. Staud
respond as they are able, according Yoga for Fibromyalgia S. L. Crotzer
to how their health is at the time. Wheelchair
Sophie's Story - My 20 year battle
with IBS - Sophie Lee Power of Vitamin D - Safraz Zaldi
Wherever You Go There You Are -
[email protected] Jon Kabat-Zinn available. No cost. Phone: 8344740 BERNADETTE: 07 8686763 Diagnosing & Treating Chronic
Syndrome Dr Sarah Myhill

Source: http://mswaikato.org.nz/images/koru-newsletters/Koru-February-2014-mswaikato.pdf