LIVING WITH ME

Fatigue that is often severe, persistent and disabling is a common problem for lupus patients. A sense of exhaustion which interferes with normal functioning is an experience that affects as many as 70% of people with lupus. We all appreciate that illness of many types is associated with extreme tiredness. Fatigue is frequently the first symptom of common illnesses such as viral infection.

http://www.scienceblog.com

There is a growing number of specialist NHS services in England for people with ME/CFS. When we have reliable information, we hope to publish details of similar services in Scotland and Wales.

http://www.meassociation.org.uk

Chronic fatigue syndrome (CFS) is a debilitating illness with particular difficulties for healthcare providers because there are no diagnostic signs or laboratory tests and because management aims to merely improve symptoms. Further complicating management, healthcare providers’awareness concerning CFS has not been rigorously assessed.

The present study aimed to ascertain United States (U.S.) healthcare providers’awareness of CFS and to assess their knowledge, attitudes, and beliefs (KAB) related to diagnosis and management of the illness. This information forms the foundation for developing CFS educational strategies

http://7thspace.com

A MOTHER and daughter from Thornbury have been talking about the effect ME has had on their family.

Helen Wood, 20, was diagnosed with myalgic encephalomyelitis (ME) in 2005 at the age of 14.

Since then Helen has had to watch her peers sit exams, finish school, get jobs and move out of home, but unfortunately for Helen none of this has been possible.

http://www.gazetteseries.co.uk

A new study published in the Journal of Internal Medicine shores up support for post-exertional malaise and exercise limitations in chronic fatigue syndrome. It also demonstrates a change in pain threshold after exercise.

Researchers monitored participants before, during and after bouts of exercise. They found that the people with chronic fatigue syndrome not only felt substantially worse after exercising, their pain thresholds dropped. In healthy participants, pain thresholds went up.

http://chronicfatigue.about.com

Action for M.E. Response to FINE Trial

On April 23 2010 the British Medical Journal published the findings of the FINE (Fatigue Intervention by Nurses Evaluation) Trial

The study compared three treatment approaches for people with CFS/ME:
1) Pragmatic rehabilitation: Devising a programme of gradually increasing activity in collaboration with a therapist
2) Supportive Listening: Non-directive counselling at home
3) “Usual” General Practitioner Treatment

Fatigue and physical functioning were tested at the end of treatment (20 weeks) and 70 weeks.

http://www.afme.org.uk

A recently conducted survey by the TUC discovered that one in five public workers turned into work during the past month despite being poorly (‘Sicknote’ culture in NHS is a myth, Nursing Times, March 29).

Another recent report (GMTV, March 29) of the findings of an earlier survey, using a wider cross section of UK workers (Tickbox, February 2007) showed that 95 per cent have admitted to struggling into work when ill. The reasons include: people actually like to work; they need the money to pay the bills; or fear losing their jobs. It seems that people are not as work shy, or throw as many “sickies” as is often suggested.

http://www.thisissomerset.co.uk

New Zealand’s blood banks plan to reject donors with a record of chronic fatigue syndrome (CFS).

http://www.meassociation.org.uk

Australia’s Red Cross Blood Service is reviewing its donation guidelines after Canada halted donations from people who have had chronic fatigue syndrome (CFS).

http://www.meassociation.org.uk

We aimed to review systematically the needs for support in managing illness and maintaining social inclusion expressed by people with chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME)

http://www.biomedcentral.com

The ME Association is receiving questions from people with ME/CFS and from health professionals about various aspects of XMRV blood testing here in the UK.  We have therefore summarised all the relevant information that is available at present.

http://www.meassociation.org.uk

Countries round the world are starting to reconsider their policies on taking blood donations from people with ME/CFS following the recent accouncement from the Whittemore Peterson Institute in Nevada about the XMRV virus.

http://www.meassociation.org.uk

U.S. researchers have found that four drugs used to treat HIV may also help combat prostate cancer and chronic fatigue syndrome. The drugs inhibit the replication of a virus found in some patients with those two diseases — now scientists must prove the virus actually causes them:

http://www.foxnews.com

A new study called ‘The hidden cost of chronic fatigue to patients and their families’ has been published in the online journal BMC Health Services Research.

http://www.meassociation.org.uk

WHATEVER happened to… …Chronic fatigue, Glandular Fever AND Seasonal Affective Disorder? Karen Fittall investigates the diseases that seem to have disappeared.

http://www.news.com.au

When you start dating someone, you have to think about a lot of things — when do you bring up touchy subjects, like kids, religion, politics, etc.? When you have a condition like fibromyalgia  and chronic fatigue syndrome, it definitely complicates the matter.

When it comes to springing that news on someone you’re interested in, I can see reasons for getting it out in the open early, but I can also see reasons to wait.

http://chronicfatigue.about.com

SUPPORTERS of a Welsh doctor who specialises in treating people with chronic fatigue syndrome have launched an online campaign to save her from a “witch-hunt”.

Dr Sarah Myhill faces the prospect of being suspended from the medical register by the General Medical Council (GMC) because of a complaint about her website.

http://www.walesonline.co.uk

The troglodytes at the British General Medical Council (GMC) are at it again, trying to destroy yet another doctor who cares about patients and is willing to tackle difficult cases of chronic fatigue syndrome and hormonal imbalances, including thyroid issues.

You can read more about the unfounded GMC attack on Dr. Sarah Myhill at her website, which outlines the various GMC actions. Also, the news website WalesOnline has an April 15, 2010 article, titled: Doctor faces suspension over website complaint that explains the situation clearly.

http://thyroid.about.com

Q: I`ve been constantly exhausted for a few months and recently heard about a virus that can cause chronic fatigue syndrome. Where can I more information about this?

http://www.dailycamera.com/

Annette Whittemore, Founder & CEO of the Whittemore-Peterson Institute, issued the following public letter to ME/CFS researchers in the UK – essentially challenging them to collaborate in studies of the ME/CFS and the XMRV retrovirus, so as to move the science forward.

http://www.prohealth.com

Neurotransmitter dysregulation is a major part of both fibromyalgia  and chronic fatigue syndrome, and those messed-up brain messengers are behind a lot of our symptoms.

Much of the reason I’m functional today is because I learned a lot about neurotransmitters and how to improve my levels.  Now, I can identify which ones may be deficient based on which symptoms are kicking up, and I know how to boost them.

http://chronicfatigue.about.com

Muscle spasms are a source of considerable pain in fibromyalgia  and chronic fatigue syndrome — our muscles clench and just won’t relax, sometimes in spite of multiple treatments.

I learned something fascinating about muscle contraction recently. It seems counter-intuitive, but it actually takes more energy for a muscle to relax than to contract. In fact, it takes twice as much. Weird, eh?

http://chronicfatigue.about.com

If anything illustrated the harrowing face of severe myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), it was the story of the late Lynn Gilderdale in the UK. Lynn’s was not an isolated case: it is thought that 10-25 per cent of patents with this diagnosis undergo severe long-term physical illness, have a poor prognosis and receive less understanding from healthcare professionals than they have a right to expect.

http://www.meassociation.org.uk

As many as 250,000 veterans of the Persian Gulf War “have persistent unexplained medical symptoms” whose cause may never be found, although genetic testing and functional brain imaging may eventually shed some light on the problem.

That is one of the conclusions of a new review of research on the constellation of physical complaints originally known as Gulf War syndrome experienced by many soldiers soon after the United States drove Iraqi forces out of Kuwait in early 1991.

http://www.washingtonpost.com

People with allergies know that their sniffling and sneezing is allergen-induced, but allergies don’t always present themselves with such typical symptoms. Sometimes allergic reactions can cause fatigue, headaches — or even depression. While not everyone agrees there is an allergy link to these conditions, there is evidence that strongly suggests it. Here’s what’s been found, and how to control your allergies to alleviate each problem.

http://www.msnbc.msn.com

An AIDS-like virus that has been linked to chronic fatigue syndrome is causing Canadian blood officials to ban anyone who has suffered from the ailment from making donations.

While stressing that researchers have found no definitive links between the virus, known as XMRV, and the chronic fatigue, Canadian Blood Services says they will err on the side of caution and implement the new donation restrictions.

http://www.thespec.com

This means that no one in Ontario who suffers from ME/CFS can ever again be told by a doctor that ME/CFS does not exist. If they do, tell them to look up Diagnostic Code 795. ‘Chronic Fatigue Syndrome’ has been given the OHIP Diagnostic Code 795 by the Ontario Medical Association as a Neurological Illness!

http://www.meassociation.org.uk



It’s a time-worn saying that an apple a day keeps the doctor away — is that true? What benefit could the apple offer to those of us with fibromyalgia  and chronic fatigue syndrome?

http://chronicfatigue.about.com

New research published in the Journal of Internal Medicine shows that the muscles of people with chronic fatigue syndrome begin showing abnormalities immediately after exercise, and that they take a long time to return to the correct pH balance after exercise. (The pH balance is a measure of acidity.) The build-up of acid in muscles is a cause of muscle pain.

Researchers say the study “identifies a novel biological abnormality” that’s tied to autonomic nervous system dysfunction.

http://chronicfatigue.about.com

A CRICKET coach has battled back from Chronic Fatigue Syndrome to launch an academy to encourage more youngsters to take up the sport.

Ingram Jones, 33, who has been coaching at Little Marlow Cricket Club for three years, has set up the academy at Booker Hill Primary School in Field Road, High Wycombe.

http://www.thisislocallondon.co.uk

There are two items on ME/CFS in the British Medical Journal today.

http://www.meassociation.org.uk

Preparing for a doctor’s appointment is important, especially since those of us with fibromyalgia  and chronic fatigue syndrome can be so forgetful, and the stress often associated with seeing the doctor can make our brain fog especially bad.

But do your doctor’s eyes glaze over when you pull out your list? Does he/she seem to get impatient by the time you get to item 5? A new survey sheds light on doctors’ attitudes toward patients with lists, and it’s information we can use to improve our doctor-patient relationships.

http://chronicfatigue.about.com

In the last issue of our ME Essential quarterly magazine, among a number of stories about ME/CFS services round the UK, we carried the following information: “….the ME/CFS service run for several years by Dr Gabrielle Murphy at the Royal Free Hospital in London has been withdrawn – after Primary Care Trusts, including Haringey, stopped referring patients there. The ME Association has received several inquiries from patients who are asking us where else they can go.”

http://www.meassociation.org.uk

Athletes and the power of the present moment
By Grant Giles

After 13 years of coaching and interacting with athletes I find that the biggest single hurdle for athletes is their mental approach to racing and training and, indeed more importantly, their attitude to life in general.

I find that athletes are type A personalities, very driven, very goal orientated and, for the most part, very anxious as well. There are exceptions to the rule but the mirror image to high performance is always some form of anxiety. It’s almost a necessity to want to succeed in difficult goals (i.e. in order to do this sport you need to be driven) and I think this applies from age group athletes right through to elite professional athletes.

http://www.xtri.com

AIDS drugs blocked a virus linked to prostate cancer and chronic fatigue syndrome, a study showed.

Merck’s Isentress fought the virus, XMRV, more powerfully than 44 other anti-HIV compounds tested against the pathogen in laboratory experiments, according to researchers from the University of Utah and Emory University. GlaxoSmithKline’s Retrovir and Gilead Sciences’s Viread also prevented XMRV from replicating, according to a statement from Emory Thursday.

http://www.sltrib.com

The central sensitivity of fibromyalgia  and chronic fatigue syndrome make us sensitive to all kinds of things, and a biggie for some of us is smells — especially artificial fragrances. Some people have full-blown multiple chemical sensitivity (MCS) as an overlapping condition, while others of us have less of a problem.

http://chronicfatigue.about.com

By request, this week I’m looking at the nutritional value of the potato to see what benefits it may have for those of us with fibromyalgia  and chronic fatigue syndrome.

Potatoes contain a lot of nutrients that we need in general, as well as some that many of us take in supplement form. They’ve got good amounts of:

* Omega-3 & 6 fatty acids
* Vitamin C
* Magnesium
* Potassium

http://chronicfatigue.about.com

With the high incidence of depression in those of us with fibromyalgia  (FMS) and chronic fatigue syndrome (CFS or ME/CFS), it’s a topic that comes up a lot. Because a lot of us are told that we’re “just depressed,” it’s understandable that the very word sets some people’s nerves on edge. Personally, I’ve never been diagnosed with depression and don’t feel that I’ve ever needed treatment for it, so please don’t interpret anything I say as meaning that depression causes FMS or ME/CFS — nothing could be further from the truth.

http://chronicfatigue.about.com

Insomnia is one of the most common complaints in those of us with fibromyalgia, and a new study suggests a way to combat it.

Very often, insomniacs will have good luck with sleeping pills for awhile, only to see them grow less and less effective over time. That’s especially the case with fibromyalgia. What this study shows is that insomniacs were a lot more successful with a combination of short-term Ambien (zolpiderm) use and long-term cognitive behavioral therapy (CBT).

http://chronicfatigue.about.com

It’s the time of year again when days are getting long and children everywhere insist that it can’t be bedtime — it’s still light outside!

Don’t tell them so, but the kids are right. It is harder to fall asleep when the sun is up. That’s because sunlight cues our brains to produce serotonin, which helps us feel awake and alert. Those of us with fibromyalgia and chronic fatigue syndrome generally don’t have enough serotonin, and many of us take drugs or supplements that raise serotonin levels (SSRIs, SNRIs, SAM-e, 5-HTP).

http://chronicfatigue.about.com