ME   ::  Myalgic Encephalomyelitis
  CFS  ::  Chronic Fatigue Syndrome
  FM   ::  Fibromyalgia
  MCS ::  Multiple Chemical Sensitivity

ABN 67 476 925 016   ME/CFS/FM Support Association Queensland Inc..
Tropical North Queensland Support Group
No 16, May 2007.Newsletter.

Phone (07) 4091 2970   Email: reynoldsn@dodo.com.au
    Website: http://au.geocities.com/me_not_cfs/

Greetings.
Welcome! We wish you all a happy and prosperous New Year, and pray that yours will be happier and healthier than the last.

THANKS
  • Thanks again to the Gambling Community Benefit Fund, and the Reef Benefit Fund. These funds have enabled this support group to reduce costs and function more efficiently with a new computer and photocopier.
  • Thanks to Rosa Lee Long for her past support and assistance.
PERSONAL UPDATE

At most meetings in the past, I have publicly applauded partners who stay and support their unwell mates. With regret I advise that I have myself fallen victim to the "departed spouse syndrome". This happened the week before Christmas, so I had to spend Christmas and New Year on my own. Personal care and daily living has now severely cut into the little time and energy I had to spare. The exhaustion that results is a real "hand brake" on my life.

I struggled on for 2 months, and finally approached Disability Services Queensland for help. They gave me a referral to the H.A.C.C team, for assessment for home help. I have just been informed that I don't qualify, as I have to met three strict criteria.

The only options open to me apparently are to privately employ someone (!), or to get a live-in housekeeper offering free room rental in return for housework. I am still considering those implications.

Essentially, I have been unable to arrange all the meetings for February. The energy envelope has only stretched as far as writing this Newsletter, printing, folding, writing envelopes, stuffing, and posting them or sending emails. My only suggestion is that you arrange your own social meetings for the next few months.

This support group still offers information by phone or mail or email, support by phone or personal visit, advocacy and referral in the health or Government systems, and contact with your local representative.

We've got you covered !

So please forgive me my lack of ability to organise and attend this next round of meetings. Please see the article later in this Newsletter about the May Seminars.

MEMBERSHIP
The Queensland Association can only operate successfully if we join with them as financial members. It doesn’t cost much, and you will be supporting the CFS network and State Newsletter.

  NEWSLETTER
  • Contributions to this newsletter are always welcome: recipes, jokes, personal stories and victories etc.
  • If you don’t require this Newsletter, please mark it “return to sender” and post it back to us.
  • Please let us know if you have email. It will save us postage.

DONATIONS
We need donations to cover office and Newsletter expenses. They can be paid direct into our Bendigo Bank account. BSB 633-000 A/c No 114 607 336. Your support ensures our financial survival.

  Useful CFS WEBSITES:
Queensland Association websitewww.users.bigpond.com/mefmtba/
The Australian Society websitewww.mecfs.org.au
Victorian Society websitewww.vicnet.net.au~mecfs
NSW Society websitewww.zip.com.au/~mesoc
LOCAL CONTACTS
Please feel free to call local contacts:
Atherton:Neil Reynolds4091 2970email
Cairns:Neville Pedler4053 6187email
Cardwell:Joy Dickson4066 0178email
Gordonvale:Irene Murgatroyd4056 1148
Innisfail:Gwen Hammerton4063 2334email
Lake EachamJohn Cuff4095 3063email
Mareeba:Christel Venturi4092 3287
Mossman:Sue Dennis4098 1637
Mossman:Helen Steley4098 2304email
Ravenshoe:Les Buglar4097 0132
Smithfield:Peter Cummins4057 5920
Townsville:Mara Hogan4779 2478email
Townsville:Ashley Hinds4778 3560email
Townsville:Marta Botta4773 9972
OR;- if there is no group near you, you may wish to become a contact. Please advise Neil ASAP.

Disclaimer: Please note that information provided is given in good faith. No Liability will be accepted, as the information is not intended to replace professional medical help and treatment.

Copyright: Information provided by this group has been given for the education and training of the disabled. This material may be subject to copyright, and as such, the user is only permitted to retain documents for their own use. Any other use or copying must be approved by the copyright holders.

Chemicals: Many people attending our meetings are sensitive to chemicals and scents. For the comfort of others, please refrain from wearing perfumes or strong scents. Please do not bring agricultural chemicals or tobacco odours to the meetings.

MEETINGS FOR FEBRUARY 2007
There will be no formal meetings in February 2007.

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STOP PRESS !

VISIT BY PHILLIP DAY.

Once again Phillip shared his ideas on health. This will be reported in the next Newsletter. We did advise everytbody who has email. Sorry, it is virtually impossible to contact everybody at short notice in any other way.

We had hoped, in collaboration with Community Health, to arrange a series of Public Health Seminars to replace the November/December round of meetings.

The vision was that we could share these meetings with other health support groups, thereby reaching wider into the community and provide the opportunity for networking and sharing resources. Community Health has agreed to this in principle, but have been hit with Health Department structural changes, and functional relocation to other Departments. Even though the idea was originally floated in August, there has been no advancement because the key players have had leave and temporary job re-assignments.

We are now in negotiations on how to combine these Seminars with our 2007 Annual CFS Awareness Week meetings. We also need to write to the dozens of other Support Groups advising them of these ideas, and to invite their participation. We do have listings of some of these, but would appreciate extra input about other groups that we may not know about.

COORDINATOR'S MESSAGE

The TNQ Support Group Coordinator has had a short health relapse since the August meetings, and we apologise for the late notice and lack of communication. If you have been promised information or advocacy, please send us a reminder, as some commitments were not recorded. Hopefully the provision of a photocopier on site will make life easier, and reduce the need for massive stocks of pamphlets and articles.

Don't forget to tell us about your ideas for social gatherings and contributions of articles for the next Newsletter.

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INFORMATION PAGES.
  1. We have on file a copy of the latest definition of M.E., as distinct from CFS. This is very interesting reading for all who need a deeper understanding of the issues, and the latest research.
  2. Morgellons
  3. Sjogren's Syndrome
  4. Are you sore all over? It could be Fibromyalgia Dr Sandra Cabot.

Morgellons

Doctors slow to recognize mysterious disease
Victims of Morgellons suffer real symptoms but get accused of delusions
Article by JACK CALAWAY, Special to the Observer

In 1979 Charlotte businessman Marc Iverson fell ill from a mysterious, debilitating ailment. Many doctors didn't believe his symptoms were real, much less the herald of a new disease.

Because symptoms didn't fit any established medical models, physicians couldn't make a definite diagnosis. That was a crushing blow for Iverson, a corporate vice president crippled at age 28.

But he persevered in seeking research, diagnosis and treatment of what became known as Chronic Fatigue and Immune Dysfunction Syndrome. This led to his Charlotte founding of the CFIDS Association of America. Hundreds of thousands of sufferers have since been diagnosed

A few years earlier, Connecticut housewife Polly Murray had complained to health authorities that her family was suffering from an unknown ailment. Persistence got her labelled a hypochondriac. She eventually convinced Yale researchers to investigate, and that led to the identification of the bacteria that had infected her and others with what is now commonly called Lyme disease.

So, will a new malady that has stigmatized a North Carolina woman and thousands of other Americans win similar acceptance in 2007, or will the allegation that they suffer from nothing but delusions cause Morgellons Disease to simmer on the medical back burner?

Debbie Drake -- not her real name -- of Cleveland County hadn't heard of Morgellons when she turned off the bedroom light one night last March and husband Jerry asked why she had blue glitter on her face. She turned the light back on and went to a mirror, but saw nothing unusual. A short while later Debbie felt something biting her legs and face. Pulling back the covers, she expected to find fleas. Instead she saw tiny black specks on her side of the sheets. Strange, she thought, that whatever it was had left Jerry alone. But the biting and crawling sensation continued throughout the night. Just a case of scabies?

That was the start of an affliction for which her regular physicians can provide no satisfying diagnosis. Her symptoms include severe fatigue, memory loss and especially the intense, itchy lesions in which strange fibres and granules -- auto-fluorescent in some cases -- appear on her skin. When hair started falling out in clumps, she went to a dermatologist who said she had scabies, an allergic reaction to skin mites. It produces itchy rashes when female mites burrow into the skin and lay eggs. Males roam atop the skin, creating a crawling sensation. Since these symptoms matched a few of Debbie's, the doctor prescribed a regimen of topical medications.

But after weeks and weeks of head-to-toe coatings, Debbie's situation had not improved. "I thought I was going to die. The itching was terrible. I reached the point where I hated to go to bed at night." Drake recalled. "I took leave from my job for a short time and was embarrassed to leave the house because of the welts and lesions on my body."

Like Iverson and Murray, she felt she was being treated with scepticism instead of with serious medical attention. "My family doctor didn't come right out and say it, but I got the impression she thought I was experiencing some sort of mental problems," said Drake.

Later she learned that many dermatologists claim the skin fibres and the sensation of parasites crawling under the skin are the effect of a psychosis called "Delusional Parasitosis." Not so, say Drake and other activists.

It appears that the Morgellons equivalent of a Marc Iverson or Polly Murray is biologist Mary Leitao, who in 2002 founded the Morgellons Research Foundation, now based in Maryland. Leitao got involved when fibres appeared on her 2-year-old son. She named the disease after a medical reference to a similar symptom displayed by 17th-century French children called "morgellons."

At least 5 cases in Charlotte

"The number of cases reported to us by persons with the symptoms has doubled in the past year," noted Leitao. "Nearly a quarter of those are from California. Texas and Florida also rank high. So far I know of at least five in Charlotte, and about 70 elsewhere in North Carolina."

Leitao's nonprofit advocacy group has cooperated with medical researchers at Oklahoma State University and funded some of their work. Debbie Drake attended a Morgellons conference there last summer and was relieved to meet folks with similar symptoms.

MRF and online advocacy groups have pressured the Centres for Disease Control and Prevention to escalate a long-delayed examination of Morgellons. That study is scheduled to focus on the California outbreak and will begin the first quarter of this year.

Meanwhile, Debbie Drake holds her head high, and hopes.

Jack Calaway
Observer community columnist Jack Calaway of Charlotte is a Certified Public Accountant. Write him c/o The Observer, P.O. Box 30308, Charlotte, NC 28230-0308, or at CalawayJ@bellsouth.net.

Brain Fog: is it Sjogren's Syndrome?

Copied from the Scleroderma News page 6 & 7
  : Taken from The Moisture Seekers - Feb/Mar 2004

This article was taken from a talk titled "Brain Fog and Other Central Nervous System Symptoms; Is it Sjogren's?" by Susan McDermott, MD, at the Sjogren's Syndrome Foundation national Meeting in April, 2003.

Brain fog is often experienced as problems with memory, or difficulty focusing.

When we talk about nervous system symptoms, often it is somehow okay if just a finger or toe is numb, but it is much scarier to have the brain be involved and to be experiencing cognitive difficulties.

In Sjogren's syndrome, the whole nervous system can be affected, but here we will focus primarily on the Central Nervous System (CNS), which consists of the brain and the spinal chord.

There are many things that can happen in the CNS, causing such symptoms as:
  • motor or sensory hemiparesis (one sided weakness or numbness usually occurring in the face, arm or leg),
  • slurred or garbled speech,
  • encephalopathy (non-specific brain illness),
  • recurrent aseptic meningitis (inflammation of the meninges, the coating that covers the brain and spinal chord,
  • without the .presence of infection),
  • seizures,
  • psychological difficulties such as
    • depression,
    • anxiety or panic attacks,
    • bladder dysfunction, or
    • extraparamital disorders affecting the muscle movements.

Another way the CNS can be affected is by brain fog. This is a condition that most people are familiar with, and yet there is no medical term for it and it cannot be researched by putting 'brain fog' into an Internet search engine.

The closest term would be 'mild cognitive dysfunction', but this encompasses a wide spectrum of often subtle changes.
Brain fog is often experienced as problems with memory or dif­ficulty focusing or problems with processing information or numbers or with paying attention. It is an experience of feeling not quite 'all there' mentally.

While some people may feel they are becoming demented or developing Alzheimer's disease, this generally is not the case, in that this is a different type of 'dementia' that is not likely to land a person in a nursing home for chronic care. In fact, brain fog is a relatively common condition that can be brought on by a variety of factors.

It is possible that patients with Sjogren's syndrome might experience any one of these CNS symptoms during the course of their disease process. However, there are many other conditions that can cause these problems, some of which may be more serious and some of which may not.

Therefore, it is important not to dismiss these things as being 'just part of my Sjogren's syndrome'. Instead, it is worth checking with your Doctor to determine how concerned to be about any problem you are experiencing and what treatment to embark on for it.

For example, many Sjogren's patients experience muscle weakness or neuropathies (pains or burning, especially of the feet); however, a stroke patient also may experience these symptoms.

Brain fog may be seen in patients with a certain type of seizure disorder who experience 'staring seizures' when they space out and then drift back, or in those with a vitamin deficiency, a thyroid problem, or in those who are extremely fatigued. These days it is often seen as a side effect of medication.

In Sjogren's syndrome, or in other autoimmune disorders such as multiple sclerosis or lu­pus, there may in fact be a dif­ferent cause for brain fog.

Though it has not been specifically proven, most rheumatologists seem to think that it is somehow immune mediated, because of its occurrence in so many patients with these conditions.

However, because of other symptoms such as depression and, often, pronounced fatigue, the lines are somewhat blurred, as these conditions also may contribute to a patient's cognitive difficulties.

In some instances, brain biopsies show white blood cells inside the brain in the areas of inflamed blood vessels (vasculitis), which can contribute to brain fog or even strokes or seizures, depending on the area of the brain involved and the extent of the inflammation.

In terms of getting a diagnosis based on CNS symptoms that are experienced, whether it be diagnosis of a new symptom within the Sjogren's picture or an entirely new determination of Sjogren's versus another disorder, one of the most important things is to find a physician who will listen to you and take your complaints seriously.

This is especially true in patients who already have a Sjogren's di­agnosis or diagnosis of another chronic disease, so that the doctor evaluates these symptoms with an open mind, and not just against the background of 'it's just part of the chronic illness'.

In fact, it may turn out to be part of Sjogren's (or lupus, or multiple sclerosis, etc), and it may be a relatively less severe condition, but it may well be a treatable one.

On the other end of the spectrum, it may be the development of an entirely new problem that requires a completely different intervention.

To determine if it is something other than part of the Sjogren's constellation of symptoms, it is recommended that the patient get a full history and physical, in­cluding a neurologic exam and a comprehensive review of systems (the '20 questions' your doctor does to determine the basic health of all the organs).

As part of this work-up, the physician will ask about any medications being taken to help determine if the symptoms relate to that.

One medication that is given for neuropathic pain is Sjogren's patients is Neurontin (Gabapentin), which has been shown anecdotally to affect a person's ability to perform high-functioning mental tasks, so that they just don't feel as sharp as when they are not taking it.

The doctor may also do blood tests to rule out possible causes. If warranted, any number of tests may be ordered, based on the initial findings, including an MRI or EEC, a lumbar puncture to determine if there is any type of infection in the spinal fluid (such as viral meningitis), or a neuro-psychological work-up.

Though the neuro-psychological testing is an expensive and exhaustive series of tests that can take five hours or so to complete, it is a very effective and comprehensive test of all the brain functions and can give a specific analysis of where any deficits may be present, so that recommendations can be made more appropriately in treatment. It also gives a wonderful baseline to determine the extent of any further progression of symptoms several years down the road.

With autoimmune diseases such as Sjogren's, there will! be fluctuations of symptoms, good days and bad days, and not everything will warrant a visit to the doctor. Many times it is a progression of subtle symptoms, or a lingering of a problem that lets us know it may be time to get something checked out.

Additionally, there are some red flags that should sound the alarm bell that says 'this I should look into'. These include:
  • high fever,
  • night sweats,
  • hallucinations,
  • seizures,
  • bizarre behaviours,
  • hemiparesis (one-sided weak­ness/numbness), or
  • periparesis (weakness of both legs),
  • double vision,
  • facial numbness or droop on one side,
  • difficulty swallowing and
  • severe headache.

Though many Sjogren's patients experience headaches, to be concerned about is the ex­treme one or the change in your usual pattern. With any of these symptoms, a prompt doctor's visit is in order.

As for treating brain fog, if the doctor finds an underlying factor such as anaemia or thyroid problem or medication side effect, it is necessary to treat for this and hopefully this will take care of the problem.

In cases of immunosuppression the use of steroids is rather controversial. In mild cases of brain fog with minor cognitive impairment they are usually not given. However, if hemiparesis or seizures develop, a more aggressive treatment is indicated. Other useful additions to treatment are memory exercises or memory aids. These even may include crossword puzzles or any puzzle that works the brain.

For most patients with Sjogren's syndrome, is the brain fog going to be related to the Sjogren's?

The answer is yes, it is likely the case as it is consistent with the Sjogren's picture.

Is it diagnostic of Sjogren's?

No, as it is seen in most of the rheumatologic diseases as well as many of the conditions discussed above.

Particularly, multiple sclerosis can be confused with Sjogren's syndrome, as they have very similar symptom pictures. So the best course of action is to talk to your doctor, and if you don't have a doctor who will listen to you and take you seriously, then find another doctor who will. Your doctor may not always agree with you as to what types of tests or treatments you may think you need, but he or she should at least be open to communicating about it.

(This condition may also look similar to Chronic Fatigue Syndrome - Ed ).

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Are you sore all over?   It could be Fibromyalgia

By Dr Sandra Cabot
What is Fibromyalgia?
Fibromyalgia is the term used to describe the following symptoms
  • Pain and tenderness in the muscles and connective tissues of the body, which can affect any area of the body; however especially the neck, shoulders, arms and back.
  • Some sufferers may also complain of pain in the legs, and the joints may be tender. It is not the same as arthritis, which is due to inflammation and wear and tear within the joints.
  • Afflicted persons often wake in the morning feeling as though they have been run over by a bus, even though no trauma has occurred!
  • The muscles are tender to touch and there are often very tender trigger points in the muscles. The affected areas may be stiff and have a burning feeling.
  • In those with fibromyalgia the incidence of chronic fatigue and headaches is much higher than the normal population.
How common is fibromyalgia?

Fibromyalgia is very common and often remains undiagnosed! It is more common in those over the age of thirty and often first manifests itself during the peri-menopausal years. It is more common in women and there may be a family history of fibromyalgia. Fibromyalgia can also occur in men especially during mid-life when the body's production of the male hormones may be decreasing. Lower levels of growth hormone production in the body, which occur with ageing, may also contribute to the increasing incidence in older persons.

What causes Fibromyalgia?
  1. Stress & depression

    It is more common if you have a stressful life style or high pressure job. Some sufferers will notice that symptoms disappear when they are on holidays or after retirement. A depressive illness (which is due to low levels of the brain's chemicals called serotonin & endorphins), may have fibromyalgia as part of the illness.

  2. Immune dysfunction.

    The immune system is always involved in the genesis of fibromyalgia. In this condition there is an over production of inflammatory chemicals. These inflammatory chemicals attack the connective tissues resulting in pain. Some researchers have found that auto­immune diseases can have fibromyalgia as part of their presentation. Such diseases include Sjogren's Syndrome, Lupus and rheumatoid arthritis. Fibromyalgia may result as a long term consequence of breast implants or cosmetic collagen injections.

    In older patients, the condition of Polymyalgia Rheumatica (PMR) can occur. PMR is characterised by the sudden onset of severe and incapacitating pain in the muscles and tendons. PMR most commonly attacks the muscles of the neck, shoulders and arms.

  3. Hidden infections

    Chronic hidden infections can irritate the immune system and cause an over production of inflammatory chemicals that may inflame the muscles and connective tissues. For instance a hidden infection in the sinuses and nose can cause a reflex inflammation in the muscles of the neck and head. Other hidden infections in the kidneys, abdominal cavity, lungs, lymph nodes and other parts of the body can lead to painful and tender muscles. These Infections may not be evident and such infections are called sub-clinical infections. They may lead to fatigue and intermittent fevers and headaches.

  4. Hormonal imbalances

    The hormonal changes that occur during the peri-menopausal years can make us more susceptible to fibromyalgia. The adrenal glands become more important after menopause, as they continue to manufacture natural steroid hormones such as DHEA and some of the weaker oestrogen called oestrone. So healthy adrenal glands are able to compensate for the failing ovaries to a significant degree.

    You may wonder how a depletion of the body's natural sex hormones could increase the tendency to fibromyalgia? Well this is something that I have observed over many years of clinical practice. The reason is quite simple - the sex hormones such as oestrogen, progesterone, testosterone and DHEA are steroid hormones, and most steroid hormones exert an anti-inflammatory effect in the body. Thus it is not surprising that natural hormone replacement can bring relief to sufferers of fibromyalgia. Another natural hormone called pregnenolone can also be added to the replacement therapy to bring added relief. Pregnenolone can act as a natural form of cortisone. These hormones can be combined together in a cream or lozenge (troche) and a doctor's prescription is required.

Strategies to overcome fibromyalgia

You do not have to live with fibromyalgia if you are aware of the treatments that are available today. Many sufferers put up with this painful and debilitating condition, as they think that the only therapies that will help are pain-killers and/or anti-inflammatory drugs. It is true that these things may help by suppressing pain and inflammation, however they do nothing to treat the causes of fibromyalgia.

  1. Reduce stress

    Relaxation techniques such as yoga, tai chi and meditation can help to relax the muscles and mind. They need to be practised regularly in order to be effective. Gentle stretching exercises and hydrotherapy can work wonders. One useful therapy is to do some gentle weights while walking or dancing in a swimming pool. Regular swimming is also most beneficial, as it does not stress the spine, however if neck pain is a problem, swimming with a kick board is good.

  2. Therapeutic Massage is vital

    A good massage therapist can find the problem areas and massage the muscle spasm and tenderness away. Tender trigger points in the tendons, ligaments and connective tissues can be massaged in order to break down a build up of scar tissue and toxins. Regular massage is essential and should be done weekly.

  3. Anti-oxidants

    Supplements containing selenium, zinc, vitamin E and vitamin C can help to reduce inflammation. It is possible to get tablets containing all these nutrients combined together.

  4. Magnesium

    A tablet containing 4 types of magnesium: Magnesium orotate Magnesium aspartate Magnesium amino acid chelate Magnesium phosphate

    Magnesium is able to reduce muscle spasm and tenderness and also relieves muscle cramps. Many people are amazed by the relief they obtain from magnesium. Magnesium is often referred to as the "Great Relaxer", as it also helps to relax the mind.

  5. Raw juicing

    I firmly believe in the power of raw juicing, as this therapy literally saved my grandmother's life in the 1930s. This inspired me to write the book titled "Raw Juices can save your Life", which has juices for each health problem. Raw juices help to reduce inflammation. They also reduce acidity, which can build up in the muscles and connective tissues. Choose cabbage, celery, carrot, beetroot, cucumber and apple to juice. In those with recurrent infections, raw juices can be used as natural antibiotics to fight the infecting micro-organisms. For antibiotic juice recipes see the book Raw Juices Can Save Your Life

  6. Hormone replacement therapy

    The use of hormones in men and women can reduce the pain of fibromyalgia. Testosterone, pregnenolone and DHEA can be used in both sexes, and usually small doses are effective in the form of creams and lozenges (troches). Oestrogen can be particularly effective in reducing fibromyalgia, especially when combined with testosterone and DHEA.

  7. Anti-inflammatory drugs

    These drugs suppress the production of inflammatory chemicals and are best used when you are having a bad attack, which often lasts 2 to 3 days. It is best to use these drugs intermittently when symptoms are bad, as if they are used in large doses for extended periods of time, side effects may occur. Side effects such as digestive discomfort, stomach ulcers, gastro-intestinal bleeding, or liver and kidney damage may occur, so it is important to keep a check on these organs if you are on these drugs for an extended time. Anti-inflammatory drugs must be taken with food.

  8. Anti-depressant drugs

    In some patients with fibromyalgia, symptoms of depression are present such as:

    • Feelings of unhappiness and doom and gloom
    • Disrupted sleeping
    • Lack of enjoyment in life
    • Low self-esteem and guilty feelings

    If a depressive illness is present, it is important to treat the depression, as well as the fibromyalgia. Natural anti-depressant tablets containing hypericum combined with B vitamins and minerals, can help to increase serotonin levels, which will reduce stress and anxiety. If the depression is persistent or severe, anti-depressant medication is required. These medications are quite safe and are not habit forming, and can be very effective in alleviating the depression and the fibromyalgia.

    Copied with permission from "Ask Sandra Cabot mini magazine", edition 4 2006.
    www.whas.com.au

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