LIVING WITH ME

The work of New Zealand M.E. pioneer, the late Dr Peter Snow, was remembered in a simple ceremony at Tapanui, West Otago, South Island, on Saturday, August 8.

About 100 people who had all known Dr Snow during the 37 years that he worked as Tapanui’s only family doctor gathered at the inveiling of a memorial plaque.

Dr Snow, who later became president of the Royal New Zealand College of GPs, brought ‘Tapanui Flu’ – later re-diagosed as ME – to the attention of the medical world in 1984 when he wrote about an unusual outbreak of the disease in the sheep-farming area in the New Zealand Medical Journal.

http://www.meassociation.org.uk/content/view/947/161/

Five years ago, I thought I was having a stroke.

I certainly had some of the symptoms. I was having trouble talking and understanding speech. I had numbness in my face and body, dizziness, and vertigo. I became increasingly disoriented. And the doctor found that my blood pressure had shot disconcertingly high.

But as it turns out, it wasn’t a stroke.

http://www.empowher.com

Cognitive behavioral therapy (CBT) is frequently recommended for people with chronic fatigue syndrome (CFS or ME/CFS), but it’s quite controversial.  Some patients, advocates and researchers say that CBT is not only ineffective, it can be harmful.  Meanwhile, some practitioners and several major health organizations (the CDC, the UK’s NICE) consider CBT the front-line therapy for the condition.

About.com

The patient was suffering from chronic fatigue syndrome, with muscle pain, abdominal discomfort, sleeplessness and a frustrating brain fog.

Dr. Victor Sierpina changed the patient’s diet and chased down the villains — wheat, corn and dairy foods. All had triggered inflammatory reactions in her body.

http://galvestondailynews.com/story.lasso?ewcd=8ae23cbf138858fa

HOSPITAL bosses in East Lancashire are facing a legal challenge from their former PR boss. Former marketing chief Derek Tyrer is taking East Lancashire Hospitals NHS Trust to an employment tribunal, claiming it failed to make adjustments for the chronic fatigue syndrome from which he suffered while working there.

http://www.meassociation.org.uk/content/view/942/161/

Those of us who have fibromyalgia (FMS) and chronic fatigue syndrome (CFS or ME/CFS) are all in this together, right? No one else really understands what we go through, and I truly believe that the best thing we can do is learn from each other.

That’s why it really bothers me when I see someone with FMS or ME/CFS take a defensive attitude toward other people with it. I see it most when someone who’s severely disabled starts to question whether someone not as badly disabled really has the condition. I’ve seen biting comments like, “I certainly can’t do all those things! Are you sure you have FMS?” or “If you’re not bedridden, I don’t think you really have ME/CFS.”

about.com

From the Eastbourne Herald, 31 July 2009

A TEENAGER took his own life after struggling to come to terms with having ME/CFS (Myalgic Encephalomyelitis / Chronic Fatigue Syndrome).

Guy Ramsey was diagnosed with the condition when he was 12 and as a result had to take time off school and was often in pain. ME/CFS is a condition that causes marked long-term fatigue, pain and other symptoms.

http://www.meassociation.org.uk/content/view/939/161/

Can D-ribose restore energy? What are cardiologists telling marathon runners, athletes, people with fibromyalgia, lyme disease, chronic fatigue syndrome, restless leg syndrome,  the generally fatigued, heart failure/heart disease patients, and the energy-depleted, frail aged about how the nutrition supplement, D-ribose can help restore energy levels depleted by drugs or stress and relieve muscle pain?

examiner.com

Please note that the phone number for our ME Connect information and support service has changed to 0844 576 5326 from 0870 444 1836. Callers to the old number will be given the new number to phone, and will not be charged for the call.

(NaturalNews) It’s clear that traditional medicine is not managing the huge problem of chronic illness very well. Every year, the numbers of people that are diagnosed with a chronic health problem are increasing- with little hope of effective treatment in most cases. And doctors who are entrusted to finding an appropriate diagnosis and treatment for patients are consistently missing the common, easily treatable, yet devastating diagnosis of Celiac Disease in millions of people every year.

naturalnews.com

Homeopathic, holistic medicine provided me with a miracle cure
by Lynn Schaufelberger

This letter is in response to Robert Young’s letter to the editor of July 17 that stated: “If you start messing around with homeopathy, you’d better pray for a miracle.” Well I guess my prayers were answered because I got a miracle cure from homeopathic and holistic means.

Pennlive.com

4th Edition Of Critically Acclaimed Book On Fibromyalgia Now Released

Birmingham, AL (PRWEB) August 1, 2009 — In this recently released 4th Edition of his book, Dr. Murphree makes it perfectly clear, he understands what his patients are going through.

Dr. Murphree reports: “I’d feel crazy too if I went days without sleeping, suffered with chronic pain, had no energy, had no life, and had been bounced from one doctor to another only to get worse year after year!”

http://www.prweb.com/releases/2009/08/prweb2704624.htm

Do you use social media? Do they help you feel less alone? Fibromyalgia and chronic fatigue syndrome make it so hard to maintain a social life that it makes sense for us to turn to things like Facebook, myspace, twitter, forums, mailing lists, etc. They don’t take a lot of effort, it’s easier to find people with the same illness(es), and if you don’t have the energy for it for awhile, it’ll be there when you get around to it. Plus, if you have a lot of downtime, they can help you fill your day.

About.com

SWINE FLU AND ME/CFS: QUESTIONS AND ANSWERS (Version 4)

Version 4 of our continually updated advice on the swine flu pandemic contains additional information on employment (section 3) and pregnancy (section 7) as well as updated feedback from people with ME/CFS who have had swine flu, and where appropriate taken Tamiflu (section 17).

http://www.meassociation.org.uk/content/view/937/161/

Do you sometimes split pills in order to save money on your meds? According to the FDA, more people are trying that right now, generally by getting pills that are double the needed dosage and cutting them in half. It sounds like a good idea, but it can be dangerous. Here’s why, according to the FDA:

About.com

Chronic fatigue syndrome, or CFS, is a debilitating and complex disorder characterised by profound fatigue that is not improved by bed rest and that may be worsened by physical or mental activity.

People with CFS most often function at a substantially lower level of activity than they were capable of before the onset of illness.

http://www.tenerifenews.com

Everyone knows about broken bones, lacerations, traumatic brain injury, loss of vision, spinal cord injury and other physical injuries that follow automobile accidents, medical malpractice, construction site accidents and product defects. One often ignored after effect is fatigue that can become chronic: chronic fatigue syndrome (CFS)

http://honolulu.injuryboard.com

Fibromyalgia is an illness that people, including most doctors, simply do not understand. Because this illness is hard to “prove,” sufferers may be secretly convicted of hypochondria or laziness by loved one’s. Most are probably told, ‘It’s all in your head’, often being urged to exercise, lose weight or take anti-depressants.

Physicians can be even worse. If they believe the condition exists at all—and some don’t—their first impulse is to mask the symptoms with prescription drugs. Patients often end up on a medical merry-go-round, seeing doctor after doctor after doctor. They end up more confused and disoriented than ever, often believing they are crazy, after all.

http://www.prurgent.com/2009-07-24/pressrelease47579.htm

In the fall of 1999, I went chronic with CFS.

After six weeks, my most recent bout of chronic fatigue syndrome did NOT disappear. Rather, it stayed with me, symptoms not quite so severe as they’d been, but there all the same. All the time.

I tried to go back to regular life. Obviously a mistake but I had no way of knowing at the time. I still didn’t know what was wrong. Didn’t know I had CFS.

I felt like I was shaking most of the time. It was hard to focus my thoughts, to think my thoughts. To understand what other people were saying, to speak. Working with numbers got difficult. I’d never been a math whiz, but I’d have said I could handle myself in the numbers arena. Until now.

http://www.empowher.com

Asthma on my father’s side. My brother died of a pulmonary embolism – a blood clot on his lungs – after an asthma attack a few months ago; he was only 72. I have a much less severe form of asthma, but I keep an inhaler by my bed.

http://www.dailymail.co.uk

Chronic fatigue syndrome (CFS) is a debilitating condition of unknown etiology and no definitive pharmacotherapy. Patients are usually prescribed symptomatic treatment or self-medicate.

We evaluated prescription and non-prescription drug use among persons with CFS in Georgia and compared it to that in non-fatigued Well controls and also to chronically Unwell individuals not fully meeting criteria for CFS.

http://7thspace.com

Once quaintly referred to as “the kissing disease” because it can be spread by saliva, infectious mononucleosis is a common viral infection that results in a few weeks or months of excessive fatigue before fading away.

New research in the journal Pediatrics puts the infection in a slightly more sinister light, however, as scientists have found evidence that teens who contract the disease may be at greater risk of developing chronic fatigue syndrome later in life.

http://www.privatemdlabs.com

From Dr John H Greensmith

ALICE Ryan’s article about ME (Myalgic Encephalomyelitis) sufferer Jeff Gerrard (“Battling illness day at a time”, News, July 11), who generously shares his experiences with a bit of light relief impish humour, is the most accurate account I’ve ever seen of this extremely disabling neurological illness which, for most, is a life sentence.

http://www.cambridge-news.co.uk

Defining insomnia and looking at some of the reasons why many of us can’t sleep well.

I HAVE been riveted by the rumours surrounding Michael Jackson’s death and the possible causes. One reason, I read, is due to the fact he had been taking a lot of prescription medicines and the powerful anaesthetic, Diprivan, for chronic insomnia. I, too, suffer from chronic insomnia and am afraid of what might happen. Is chronic insomnia very common?

http://thestar.com.my/health/story.asp?file=/2009/7/19/health/4333691&sec=health

The Green Paper, Shaping the Future of Care Together, has been published, launching the Government’s consultation on proposals for a National Care Service for adults in England.

Although it acknowledges that: “There are many reasons why people might need care and support, such as: accidents, long-term illnesses, being disabled, growing older” the impetus for change is the potential cost and care implications of our aging population.

http://www.afme.org.uk/news.asp?newsid=589

Just getting through the day is a challenge when you have fibromyalgia and chronic fatigue syndrome. Something that’s really helped me is hearing how other people do it, and the new Readers Respond feature here at About.com has increased the learning opportunities for all of us.

About.com

Today AP reported that Andy Burnham, the British Health Minister, said the UK could have up to 100,000 new cases of swine flu per day by the end of August. Currently we have seen only about 100,000 reported cases worldwide. If the cries of Andy Burnham are anywhere close to accurate, the world may be in for a huge health crisis. The UK won’t be the only country that has big problems. The North American countries seem like a sure bet to join in. Japan is very worried. I’m sure many European countries, the former USSR countries, and China will get their share too.

http://seekingalpha.com/article/148672-heb-pressure-mounting-on-fda-to-approve-ampligen-for-chronic-fatigue

In today’s society, we’re largely defined by our jobs. It’s one of the first questions people ask each other upon meeting — “What do you do?” The vagueness of that statement says a lot: in spite of how non-specific the question is, we all know that querent wants to know about our job.

About.com

It’s the rare person with fibromyalgia or chronic fatigue syndrome who hasn’t had to give up some activity. Whether it’s something little (like an occasional hobby), or something major (like a career), we’ve all made those sacrifices.

About.com

A four-disc DVD set containing all the presentations from this year’s Invest in ME International Conference, and the address by ‘Osler’s Web’ author Hillary Johnson at the conference dinner, is now available.

http://www.meassociation.org.uk/content/view/933/161/

A summary of the Royal Society of Medicine conference “Medicine and Me: ME and CFS – hearing the patient voice” which took place in London on 11 July 2009 has been provided by Mr John Sayer, from ME Support Norfolk. His notes appear below.

The half-day conference was organised jointly by the Royal Society of Medicine, the MEA, AfME, AYME, the 25% ME Group and TYMES Trust.

http://www.meassociation.org.uk/content/view/931/161/

THE pressures of snap inspections, league tables and pupil performance has led to a sharp rise in the numbers of teachers suffering stress, it was claimed last night.

Worried unions chiefs said the perpetual scrutiny under which teachers were forced to work had created a “hot house atmosphere” which was detrimental to their health.

Their fears were voiced after figures obtained by the EADT revealed an 81% increase in only three years in numbers of teachers being signed off with work-related stress.

In 2005/06, 113 separate staff absences were attributed to stress, but by 2008/09 that figure had leapt to 205.

http://www.eadt.co.uk

The ME Association continues to receive a wide variety of questions about swine flu (influenza A virus H1N1) and how the pandemic might affect people with ME/CFS.

The numbers affected in the UK are now rising quite rapidly – the current official figure is around 100,000 cases  -  but the true total figure is almost certainly much higher.

http://www.meassociation.org.uk/content/view/930/161/

Rushing back to work after swine flu could be dangerous. Taking your time to recover is the best way to avoid complications

Last week a friend of mine, Emma, a 31-year-old publisher, developed what she thought must be swine flu. She decided it wasn’t any worse than a bout of flu she’d had before, and followed the NHS guidelines and stayed at home, waiting for it to pass.

http://www.guardian.co.uk/world/2009/jul/21/swine-flu-recovery-tips

From ‘Disability Now’, 15 July 2009. Report by Cathy Reay

New government testing for Employment and Support Allowance puts disabled people at risk of being told to go back to work, say campaigners.

The reaction comes after it was announced yesterday that up to 90% of people claiming sickness benefit have been told that they are fit to work under a new government regime that was introduced last year.

http://www.meassociation.org.uk/content/view/924/161/

Calling all nurses

A recent report on the level of understanding about M.E. among nurses (see InterAction 68, p 12), prompted the Forward ME Group, Chaired by the Countess of Mar, to invite Dianne Burns, who sits on the steering group of the RCN Education Forum, to attend one of their meetings.

Hearing the Group’s concerns about the knowledge and education of nurses in relation to the needs of patients, Dianne, a Lecturer in Community Nursing at the University of Manchester, has pledged to find out more about what is happening at coal face level.

http://www.afme.org.uk/news.asp?newsid=587

Figures obtained by the Financial Times indicate that two thirds of new applications for work related sickness benefits are now being rejected.

Story by Alex Barker, Political Correspondent, 12 July 2009

More than two-thirds of applicants for sickness benefits are being rejected under a new testing regime, casting doubt on the validity of 2.6m existing claimants deemed unfit for work.

http://www.meassociation.org.uk/content/view/920/161/

The situation regarding swine flu is changing constantly, the government has set up a new website giving guidance and information, please check it for the latest news.

http://www.afme.org.uk/news.asp?newsid=588

Slumped on the stairs, heart pounding and legs like jelly, Jeff Gerrard couldn’t move. For a fit and healthy 27-year-old, it was a terrifying experience – which marked the beginning of a 30-year battle with ME.
“There have been times when I physically couldn’t get out of bed, times when just taking a shower felt like a dream,” explains Jeff, now 56.

http://www.meassociation.org.uk/content/view/919/161/