LIVING WITH ME

The next meeting of the APPG on ME will be held on Wednesday 8 July 2009, in Committee Room 19, House of Commons, from 1.30pm to 3pm. Please note this change of venue – previously, the meeting was planned for Committee Room 20. The meeting will contain the Annual General Meeting and the future work of the APPG will be discussed.

http://www.meassociation.org.uk/content/view/895/70/

Published Date:  05 June 2009
The willingness of teenage myalgic encephalomyelitis sufferer Hayley Keen to share her experiences and her generosity in raising funds (Eastbourne Herald, May 29) for the Association of Young People with ME makes a valuable contribution to our understanding of this baffling, complex, neurological illness, which we need because sufferers do not all start or progress in the same way.

Eastbourne Herald

The patient questionnaire for the All Party Parliamentary Group inquiry into NHS services for people with ME is now available on the APPG website. The deadline for completed questionnaires, either by email or post, is 20 July 2009. Note: the inquiry only relates to NHS services in England, as NHS services in other parts of the UK are outside the remit of the Westminster Parliament.

http://www.appgme.org.uk/index.html

From the Henley Standard

This news story yet again illustrates the need for doctors to carry out a thorough clinical assessment – involving history, examination and blood tests – before a diagnosis of ME/CFS is confirmed.  The medical procedure for doing so is described in detail in section 6 (Diagnostic Assessment) of ‘ME/CFS/PVFS  An Exploration of the Key Clinical Issues’ – the MEA guidance for health professionals.

http://www.meassociation.org.uk/content/view/891/70/

Sky News ran a couple of items about the need for more biomedical research into ME on Saturday, June 13.

The channel ran a two and a half minute item after being tipped off about an ME conference that took place in Norway on Saturday. While Sky News did not manage to get to Norway, this item featured interviews with a former City worker Heidi Tyrvainen who spoke about how she copes with ME, and with Dr Jonathan Kerr – who argued that scientific collaboration was necessary to validate the biological abnormalities that have already been found.

http://www.meassociation.org.uk/content/view/890/70/

NOTE:  A new research study adds further support to the view that muscle tissue abnormalities play a role in the pathogenesis of ME/CFS – see abstract below.

The MEA is currently funding research into muscle function in ME/CFS at the University of Newcastle – see report in the May issue of ME Essential magazine.

http://www.meassociation.org.uk/content/view/886/70/

On my 25th wedding anniversary, I thought I was having a stroke.

I felt like I was in a dark tunnel. I felt like I was disappearing. I could feel it happening and couldn’t stop it. Terrifying.

My vision was fractured, like special effects in a movie, where the action scenes speed up, slow down, freeze frame . . . But this was not special-effects, this was my real eyes and my real brain.

Empowher.com

Damning Documentary Traces Evolution of Lyme Disease Epidemic

Lyme disease takes its name from the town in Connecticut where it first emerged in the early Seventies. Until then, the malady was referred to as Mrs. Murray’s new disease in deference to the intrepid reporter who had been desperately attempting to direct the medical establishment’s attention to the assortment of ailments which had suddenly started afflicting so many local folks.

http://newsblaze.com/story/20090617093323kamw.nb/topstory.html

A week after we were supposed to have an FDA decision on Ampligen (poly I: poly C12U) for chronic fatigue syndrome (CFS or ME/CFS), there’s still no word on what the decision is or when we might know.

About.com

ScienceDaily (June 18, 2009) — New research from Jefferson Hospital for Neuroscience (JHN) may redefine how Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) is diagnosed.

http://www.sciencedaily.com/releases/2009/06/090610124821.htm

Many claimants suffer from medical conditions that cause disabling symptoms but are difficult to diagnose and/or document. These conditions are known as “hidden disabilities”. Medical conditions such as Fibromyalgia, Chronic Fatigue Syndrome and Lyme disease are some examples of these medical conditions. These cases must be presented with emphasis on different factors than cases that lend themselves to clear “medically acceptable objective, laboratory and clinical diagnostic techniques”.

http://www.examiner.com/

A brief update on NHS service provision for people with ME/CFS in Scotland was given by health minister Nicola Sturgeon in the form of a written answer on June 4.

http://www.meassociation.org.uk/content/view/884/70/

One of the most certain things about fibromyalgia (FMS) and chronic fatigue syndrome (CFS or ME/CFS) is that there’s some sort of genetic predisposition. We also know that FMS and ME/CFS involve a lot of neurological abnormalities.

http://chronicfatigue.about.com/b/2008/10/26/fibromyalgia-chronic-fatigue-syndrome-other-neurological-diseases.htm

It’s not unusual, with fibromyalgia (FMS) or chronic fatigue syndrome (CFS or ME/CFS), to develop new symptoms. When you take multiple supplements, though, how do you know when you’re experiencing side effects instead of symptoms?

http://chronicfatigue.about.com/b/2008/11/04/my-vacation-from-supplements-for-fibromyalgia.htm

I have had CFIDS (Chronic Fatigue Immune Dysfunction Syndrome) for almost 20 years. It is a very real, debilitating and serious illness. CFIDS is a disease with a group of symptoms that are associated with severe and unrelenting fatigue.

http://www.associatedcontent.com/article/141036/cfids_our_children_suffer_also.html?cat=70

People who have Chronic Fatigue Syndrome, or CFS, have low energy levels and a low energy reserve. Physical activity is particularly taxing on a CFS patient. Extracurricular activities are not always an option for many who suffer with CFS.

http://www.associatedcontent.com/article/173560/hobbies_for_chronic_fatigue_syndrome.html?cat=24

Dealing with the day-to-day struggles of living with a chronic illness can be trying. Coping Corner is the spot where you can find the online support you need to get through your day. Check out these Coping Corner features:

http://www.immunesupport.com/community/copingcorner.cfm

IT came as no surprise that a leaked health service report revealed that ME is a condition that has been neglected for years and the treatment of it is in radical need of a shake-up.

The wide-ranging study of more than 160 sufferers showed they felt they were neglected and not listened to by the NHS, there were no strategies in place for them, and there was a lack of advice concerning support groups.

http://www.meassociation.org.uk/content/view/641/70/

McClatchy Newspapers (MCT) – Most of the 15 people gathered for a support group this month did not look sick.

http://www.catholic.org/hf/health/story.php/story.php?id=33338

Imagine waking up each day feeling extremely fatigued. Not the kind of tiredness that goes away after you rest but an exhaustion which takes over your life and limits your ability to do even the most ordinary activities.

If you suffer from chronic fatigue syndrome you may have other symptoms too – muscle pain, memory problems, headaches, pain in multiple joints, sleep difficulties, sore throat and tender lymph nodes.

http://www.advertiser.ie/galway/article/11358

The grass is turning green, my forsythia’s about to bloom, spring is in the air – along with ever increasing amounts of pollen. A big percentage of us with fibromyalgia (FMS) and chronic fatigue syndrome (CFS or ME/CFS) have allergies, which can make this time of year especially hard. As you’ve probably learned, even mild hay fever can make your other symptoms worse.

http://chronicfatigue.about.com/b/2009/04/22/allergy-season-with-fibromyalgia-chronic-fatigue-syndrome.htm

We’ve long known weather can affect health. A drop in air pressure and certain peoples’ joints begin to ache. Cloudy days can dull one’s mood and shoveling wet snow increases the risk of a heart attack.

But a new website and its designers are hoping to educate users in the benefits of biometeorology — the science that studies the links between weather and peoples’ and animals’ reactions to it, while improving health.

http://www.nj.com/business/index.ssf/2009/04/web_survival_new_site_explains.html

Probiotics: They live in yogourt and promote good gut health, but many of us are still in the dark as to what, exactly, these “good” bacteria do for us. In the first of a two-part series, we take a look at the role probiotics play in maintaining mental health.

http://www.canada.com/health/Brain+belly/1518758/story.html

GODFREY – Often misdiagnosed or undiagnosed, chronic fatigue syndrome affects millions of Americans – and probably a neighbor such as Martha Cannedy.

Cannedy, 64, of Godfrey, has suffered from chronic fatigue syndrome for 23 years, with the first seven of these years living with misdiagnoses. She calls the disease “a horror.

http://www.thetelegraph.com/articles/cannedy-25929-syndrome-chronic.html

I really didn’t think I’d ever find myself writing again.

I was in bed with a brain full of static, and a body swirling with hallucinogenic sensation, for alot of years. I’d look back wistfully on my life pre-CFS, feeling like my memories were someone else’s. I pretty much felt like my life was over, the future ahead of me looked depressingly like the present.

And yet! I find myself being given a second chance.

http://www.empowher.com/news/herarticle/2009/04/21/second-shot-life-after-experiencing-years-chronic-fatigue-syndrome

Dr Des Turner MP, Chair of the All Party Parliamentary Group (APPG) on ME, has set up a website for the APPG – which includes a section about the APPG’s inquiry into NHS service provision for people with ME/CFS in England

http://www.meassociation.org.uk/content/blogcategory/30/70/

There has been a great deal of internet discussion about this project – so The ME Association asked Dr Richard Sykes if he could produce a report summary that could be placed on our website in order to explain the background, implications and conclusions.

Please note that The MEA has not had any input into or involvement with the CISSD Project.

http://www.meassociation.org.uk/content/view/878/161/

A new internet forum has been set up to offer safe support for people with ME/CFS who want to use their computers to share their experiences. Dr Charles Shepherd, medical adviser to the ME Association, has already offered his best wishes to the group, and hopes it will reduce members’ feelings of living quite alone with and isolated by the illness.

http://www.meassociation.org.uk/content/view/881/161/

As part of the information gathering process in relation to establishing a UK post-mortem and tissue bank for ME/CFS research, Dr Charles Shepherd visited the Medical Research Council’s Brain Banks in Edinburgh last week – where he met with Dr Colin Smith and Professor James Ironside.
The Edinburgh Brain Banks currently collect, store and provide tissue to researchers who are looking at a number of diseases – in particular HIV/AIDs (where tissue in addition to brain and nervous system is collected) and CJD.

http://www.meassociation.org.uk/content/view/871/161/

MANILA, Philippines – Doctor Ang Peng Tiam, head of the Department for Medical Oncology, Singapore General Hospital, has treated more than 7,000 patients. He believes that cancer is not a terminal illness.

http://showbizandstyle.inquirer.net/lifestyle/lifestyle/view/20090420-200450/Wheatgrass-vs-hypertension-chronic-fatigue

In response to a number of requests received this week, the ME Association has issued the following note about swine flu.

http://www.meassociation.org.uk/content/view/870/161/

Following a press conference at the Ritz Hotel in London on Thursday May 28, a number of UK newspapers have been reporting that the cause of ME/CFS has been identified and that a simple home-based diagnostic test for ME/CFS is now commercially available to the general public.

http://www.meassociation.org.uk/content/blogcategory/30/70/

Everybody loves eating chocolates, specially at this time of the year. Does it have any health benefits?

http://northern-district-times.whereilive.com.au/news/story/chocolate-heaven/

The Minutes of the meeting of the All Party Parliamentary Group on ME dated 1 April 2009 can be viewed as a Word document ……..

http://www.meassociation.org.uk/images/stories/APPROVED%20MINUTES%20APPG%20on%20ME%201%20April%2009.doc

It’s difficult to diagnose, treat or live with fibromyalgia (FMS) or chronic fatigue syndrome (CFS or ME/CFS). The symptoms are many and they can fluctuate like crazy — one day you feel pretty good, the next you can barely walk, the next you’re OK physically but just can’t concentrate or communicate effectively. How can you and your doctor figure out what is going on with you?

http://chronicfatigue.about.com/od/whyfmscfsarelinked/a/track_symptoms.htm?nl=1

Notes of a Presentation by Dr Vance Spence, MERGE Chairman, 18 February 2006, All Saints Church Hall, Denmead, at the invitation of Invest In ME.

http://www.investinme.org/IIME%20Campaigning-Spence%20Talk%20Hampshire%2018%20Feb%2006.htm

A four week exercise program can help young people with chronic fatigue resume school and social activities, Melbourne researchers have shown.

Adolescent patients with chronic fatigue syndrome showed significant improvements in their physical and psychological outlook after a short, intensive inpatient exercise program, a study at Melbourne’s Austin Hospital found.

http://www.6minutes.com.au/articles/z1/view.asp?id=479959