‘ME sufferers plead for research into their illness’
ME is one of the most misunderstood illnesses. Ceri Isfryn spoke to three sufferers whose dreams have been shattered by the condition
CAN you imagine not sleeping for 48 hours, then running a marathon with a hangover and a dose of flu? That’s how it can feel to have ME.
http://www.meassociation.org.uk/content/view/923/161/
Farmers can continue using pesticides near people’s homes after an environmental campaigner lost her seven-year legal battle to highlight the health risks of long term exposure to crop spraying.
There has been a lot of controversy over the years over whether Chronic Fatigue Syndrome is a result of depression or if the depression comes once the illness has started. It is kind of like the chicken or the egg – which came first?
http://www.associatedcontent.com/article/651929/depression_and_chronic_fatigue_syndrome.html
Most people who suffer from CFIDS (Chronic Fatigue Immune Dysfunction Syndrome) at one time or another have asked themselves, “Am I crazy?” Or “Why doesn’t anyone believe I’m sick?”
http://www.associatedcontent.com/article/141007/cfids_the_mind_and_body_connection.html?cat=70
Physicians advise patients with Chronic Fatigue Syndrome to pace themselves carefully and to avoid unusual emotional or physical stress. Follow a regular and manageable daily routine and take modest regular exercise under the supervision of a physician or physical therapist.
http://www.immunesupport.com/chronic-fatigue-syndrome-treatment.htm
Thanks to the support of well over 1,000 individual donors, the CFIDS Association of America reached its milestone $1 million research goal ahead of schedule, enabling us to fuel the biggest nongovernmental CFS research initiative ever undertaken in the United States.
http://www.cfids.org/cfidslink/2008/100801.asp
The ME Association is delighted to announce that a provisional abstract and paper on research into gene expression, funded by our Ramsay Research Fund, has today been published by BMC Medical Genomics.
http://www.meassociation.org.uk/content/view/902/70/
Do you feel tired, irritable and run-down even after a good night’s rest? Chances are you are suffering from chronic fatigue syndrome (CFS). This is a condition that urban Indians are increasingly becoming susceptible to, according to Sushum Sharma, senior consultant, internal medicine, and head of the preventive healthcare programme at Max Healthcare, New Delhi.
In the United States, celiac disease is four times more common now than it was 50 years ago, according to a study cited by Webmd.com.
The Mayo Clinic study also found people with undiagnosed and untreated celiac disease were at an increased risk for early death.
Although the rate of disease is on the rise, Webmd.com quoted University of Chicago Celiac Disease Center Director Stefano Guandalini, MD as saying “only about 5% of people with celiac disease know they have it.”
Mitochondrial dysfunction is getting more and more attention as an underlying mechanism of chronic fatigue syndrome. Dr. Sarah Myhill, a UK doctor who was an early proponent of this theory and has a treatment protocol based on it, has just published a paper on mitochondrial dysfunction that even points to a possible diagnostic test.
The American College of Rheumatology defines fibromyalgia syndrome (FMS) as widespread pain that must have been present for at least three months with 11 of 18 specific tender points found on digital palpation.
http://physician-assistant.advanceweb.com
CFS, or chronic fatigue syndrome, is one of several impairments for which both the cause and an effective course of treatment are both nebulous. Partly for this reason, CFS patients who have become disabled, unable to work, and have found it necessary to file for social security disability are routinely denied on claims for benefits.
Two letters I received recently from readers asked about two quite common complaints of patients: fatigue and forgetfulness. These problems affect many people and I know that they are of interest to many Filipinos based on the letters we receive. These symptoms may mean nothing much to worry about, but they could also be precursors to something more serious.
A gene signature for post-infectious Chronic Fatigue Syndrome (Myalgic Encephalomyelities) may be the key to differential diagnosis in this complex neuroimmune disease (ICD-10 G93.3).
Persistent fatigue after infection is recognized and forms part of a clinically-defined syndrome (chronic fatigue syndrome or CFS). CFS is a highly heterogeneous illness which is characterized by the presence of new-onset persistent or relapsing exhaustion of sufficient severity that it interferes with normal activity. Patients also report impaired short-term memory and concentration sleep abnormalities as is consistent with proinflammatory cytokines, musculoskeletal pain which is also recognized in infectious disorders and post exertional malaise.
http://insciences.org/article.php?article_id=5941
Many claims for disability benefits based on CFS/FM also consist of a mental component. Social Security as developed evaluative criteria for CFS and FM. The following information must form the basis for the application.
“People should know that it’s a real illness that has specific criteria for it to be diagnosed,” says Morris Papernik, MD. “People who are suffering from fatigue which is overwhelming and does not seem to improve, even though they get enough sleep, should be talking to their physician. It’s an illness that does not have a blood test or a specific marker for it. Therefore, it’s a diagnosis of exclusion.
http://www.theresident.com/2009/07/chronic-fatigue-syndrome/
What are the treatment options for someone suffering from Chronic Fatigue Syndrome / Myalgic Encephalomyelitis CFS/ME? Part of the answer probably lies with the doctor that gave the diagnosis or whether a medical diagnosis has been made at all. (Most sufferers still struggle to get their condition recognised by their GP and travel from doctor to doctor in an effort to get a proper diagnosis.) If you are lucky enough to get a sympathetic doctor and a positive diagnosis, you can start with treatment. But where do you begin? CFS/ME is after all a multi-level illness…
Research center would be dedicated to ME/CFS, fibromyalgia, Gulf War Illness, Lyme disease, MCS, and other environmental illnesses.
Sat., Jun 27, 2009, via the Co-Cure Listserv: Fantastic news! The New Jersey Assembly has unanimously passed Assembly Resolution 202 to fund a Center of Excellence in New Jersey for Chronic Neuroendocrine Immune Disorders – which include CFS, FM, and related illnesses. [See the full text, attached below, and] link to www.njleg.state.nj.us/bills/BillView.asp for full information on this resolution. The Assembly voted unanimously for this legislation.
http://www.prohealth.com/library/showarticle.cfm?libid=14673
Caused by Borrelia burgdorferi (a type of bacteria), Lyme disease is passed on to humans by the bite of infected ticks. If left untreated, it can lead to neurological problems (such as facial palsy or meningitis), memory loss, chronic joint inflammation, inflammation of the heart and/or its conduction system, and changes in mood and sleep habits.
Controlling the mind is the most powerful tool known to mankind. But the perception of how we see ourselves, our behavior patters, our mental and physical well-being can sometimes become flawed and create internal havoc and turmoil.
I don’t know about you, but I get really sick of doctor and researchers focusing only on our top couple of symptoms. Yes, I need effective pain relieve. Yes, it would be lovely to wake up refreshed and energetic in the morning. But when we’ve got several dozen symptoms, doesn’t it seem like they’d understand fibromyalgia and chronic fatigue syndrome a whole lot better if they looked beyond pain and fatigue?
When doctors and researchers routinely scratch their heads over aspects of fibromyalgia (FMS) and chronic fatigue syndrome (CFS or ME/CFS), what hope do we have of improving our lives?
That’s not a rhetorical question. What’s the answer? Our best hope lies in EACH OTHER — the more we share our experiences, the more we learn about our illnesses and how to live better with them.
Have you wondered why fibromyalgia (FMS) and chronic fatigue syndrome (CFS or ME/CFS) make it so difficult to do things like cook dinner, shop for groceries, or do even the simplest multi-tasking? Some days, I swear I can’t walk and chew gum at the same time. This problem, more than anything, is what lead me to leave my TV news-producing career — producers have to multi-task, and after 8 years on the job I no longer could.
I hadn’t had a stroke after all. Rather, I had a whammy of a case of vertigo.
I spent a lot of time in bed, lived in my nightgown and housecoat, and had bedhead all the time. I was a sorry mess for months. I started reading some books by L.M. Montgomery. I read Anne of Green Gables books, Emily books, Story Girl books and Pat of Silver Bush books. I’ve read through these many times since I was 11.
The FDA’s 1-2 week delay on the Ampligen decision has now stretched into nearly a month. While this kind of thing is hardly uncommon with the FDA, as time drags on with no announcement people are wondering if something more is going on. At least one Wall Street blogger thinks Ampligen’s manufacturer, Hemispherx Biopharma Inc., will withdraw its application rather than have it turned down. That would save the company some embarrassment and allow it to focus its energy on studies of Ampligen for swine flu (H1N1). Then again, this particular blogger has been hammered for spreading misinformation about both the drug and the company, so it’s hard to say whether his opinion carries any weight.
Chronic fatigue syndrome (CFS or ME/CFS) is much more than just being tired a lot. People with ME/CFS are so run down that it interferes with their lives and can make it hard to function at all. The severity varies, but typically people with ME/CFS say they have trouble staying on top of their responsibilities at home and on the job. Others are severely disabled and even bedridden.
http://chronicfatigue.about.com/od/whatischronicfatigue/a/what_is_CFS.htm
Fibromyalgia syndrome (FMS) is a chronic condition that causes intense pain in various places around the body, including muscles, connective tissues and joints, as well as a host of other symptoms. It affects more than 6 million people in the U.S.
http://chronicfatigue.about.com/od/whatisfibromyalgia/a/what_is_fms.htm
A NORTH-EAST woman who suffers from the chronic fatigue condition ME has spoken of her battle to live with it, as ME Awareness Week started yesterday.
Irene Lavety led an active, healthy lifestyle before she was diagnosed seven years ago, becoming one of 250,000 people in the UK with myalgic encephalomyelitis, also known as Chronic Fatigue Syndrome (CFS).
http://www.pressandjournal.co.uk/Article.aspx/1210190?UserKey=
We all need sleep. Without enough, we can’t function. Without any (for long enough), we die. Sleep deprivation is used as a means of torture.
The term “sleeping like a baby” has never applied to me, even when I was a baby. (Just ask my mother.) I’ve dealt with insomnia for as long as I can remember. Over the years, I’d read countless articles about what’s called “sleep hygiene,” only to find the same old advice recycled into various formats: get up at the same time every day, create a relaxing sleep environment, etc.
A recently broadcast radio programme, about a man said to have M.E. (Myalgic Encephalomyelitis), who has recovered by taking exercise, in this case long walks, is typical of some attitudes. It needs serious reappraisal because they may be giving a completely wrong impression and causing treatment to be recommended which is actually harmful.
ME (Myalgic Encephalomyelitis) or CFS (Chronic Fatigue Syndrome), as it is also sometimes known, is a potentially severely disabling and chronic illness. It affects all age groups, including children and young people. The cost of this illness cannot be calculated – lost skills, productivity, education, careers, financial and personal independence, relationships.
A database of nurses who have a special interest in ME/CFS is being complied by Dianne Burns, a Lecturer in Community Nursing at the School of Nursing, Midwifery and Social Work, University of Manchester.
http://www.meassociation.org.uk/content/view/906/70/
I have been driving for 25 years and shocked at the lack of regard a high number of people seem to have for the general rules of the road and speed limits.
http://www.wigantoday.net/your-letters/Too-many-are-ignoring-the.5410988.jp
One woman has thrown away the wheelchair to which she was confined for two years.
She suffered from ME (chronic fatigue) for 15 years and now, confounding medical orthodoxy, is symptom-free.
Another patient says he endured asthma intermittently for 30 years – and is now cured.
The ME Association’s annual ‘ME Question Time’ will move to Chichester on Saturday, September 19 – and this year we shall be joining forces with reMEmber.
http://www.meassociation.org.uk/content/view/905/70/
A number of drugs which act on the body’s immune system (immunomodulatory drugs) have been suggested as possible forms of treatment for sub-groups of people with ME/CFS. These drugs include Ampligen, immunoglobulin, alpha interferon, inosine pranobex/Imunovir and tumour necrosis factor alpha inhibitors. Unfortunately, the results from clinical trials so far have failed to demonstrate any really consistent and significant benefits. So most doctors in the UK do not use immunomodulatory drugs for people with ME/CFS.
http://www.meassociation.org.uk/content/view/909/161/
Home carers who want to explore ways in which they can develop their important skills are being offered the space in which to so by the National Extension College – and it won’t cost them a penny!
http://www.meassociation.org.uk/content/view/904/70/
Q I recently had blood tests carried out by a rheumatologist in an attempt to pinpoint why I feel so poorly. I have aching joints, feel exhausted, weak and often weepy. I’m only 36 but feel as if I am trapped in the body of an 80 year-old, and at times get very depressed.
Apparently, all is functioning as it should be, and I do not have any serious diseases. The rheumatologist did say that my tests showed a very lowwhite blood-cell count, and mentioned something about that being anm indicator of possible viral infection, but did not go into detail. Should I have been more insistent?
http://www.meassociation.org.uk/content/view/901/70/
There is widespread confusion amongst doctors and women about ovarian cancer, a charity has said.
http://www.meassociation.org.uk/content/view/903/70/
A cervical cancer vaccine administered to school-age children may have had a role in a teenager becoming ill with Chronic Fatigue Syndrome, MPs were told in a recent adjournment debate in the House of Commons.
http://www.meassociation.org.uk/content/view/897/70/
A drug which is normally used to treat heroin addiction can deliver “life-changing” results for a range of medical conditions, sparking calls for it to be offered more widely to patients.
Medical experts claim that low-dose naltrexone (LDN) has been used successfully for people with a variety of conditions which affect the immune system, including multiple sclerosis, Crohn’s disease and chronic fatigue syndrome.
On a bad day, my world is tiny and I can barely get out of bed. On a good day, the box is bigger but I still might crash through
It took a lot of years for me to come to terms with my enormous need for rest and regeneration.
I saw it as defeat, crawling into my bed in the middle of the day and going to sleep. I saw it as letting the enemy win, and I resisted this need for a long time. Only when I could no longer think straight, when my neurological symptoms became so severe that I couldn’t function, only then would I curl into a ball in a quiet room and sleep. I did this for years.
Human beings may belong to the same species, but they experience sickness differently. Each nation has its favoured illnesses and its favoured explanations, which alter over time. A doctor in one country may label an illness as depression, while the identical symptoms may be labelled as low blood pressure in another, or as the effects of dental amalgam in yet another.
The National Institute for Health and Clinical Excellence (NICE) will consider in August 2010 whether there is a need to review its Guideline on ME/CFS, health minister Lord Darzi has stated in a written reply to leading parliamentary ME campaigner the Countess of Mar.
http://www.meassociation.org.uk/content/view/896/70/
Chronic fatigue syndrome (CFS) and irritable bowel syndromes (IBS) share the same predisposing markers, but triggering markers differ, a new study by UK researchers has found.
http://www.pulsetoday.co.uk/story.asp?sectioncode=23&storycode=4122519&c=2
In the summer of 2002, the Atkins Diet was making a big splash in the news.
It came along at the right time for me. I had been packing on the pounds for a few years, and my weight was spiralling out of control. I felt sick, with pain in the pit of my stomach all the time. I’d weighed 130 lb. when I got married in 1979, and by 2002 I was nudging 200 pounds.
Ashok Gupta Explains the Amygdala Retraining Program for ME/CFS/FM and Associated Illnesses
I have suffered from ‘chronic fatigue syndrome’ (ME/CFS) myself. Around 10 years ago, I developed it while studying at University.
Since then, I have dedicated my life to finding an effective treatment for ME/CFS and associated conditions such as fibromyalgia, multiple chemical sensitivities, Gulf War Syndrome, etc. I have been completely well for years, and I successfully treat patients at my clinic in Harley Street in Central London (www.guptaprogramme.com; e-mail: info@guptaprogramme.com).
Ritchie J. Shoemaker, M.D., is a physician who has been working on the forefront of biotoxin-related illness and authored the ground-breaking book Mold Warriors. His research centers around MSH, an anti-inflammatory, regulatory hormone made in the hypothalamus. According to Shoemaker, an MSH deficiency can create “chronic non-restful sleep and increased perception of pain (i.e. chronic fatigue and chronic pain), in addition to other symptoms.”
IT is bad enough to be ill in the first place but when people refuse to believe you’re sick, it must be infuriating. But blunt, unsympathetic scepticism is typical of the more unpleasant reactions to myalgic encephalomyelitis more commonly known by its initials, ME, although there is far less ignorance about it now than there was.
Number10.gov.uk – The official site of the Prime Minister’s Office
We received a petition asking:
“We the undersigned petition the Prime Minister to petition for Ministers Of Health, MRC and CMO to attend the INVEST in MEConference 29th May 2009.”
Details of Petition:
“We the undersigned petition the Prime to send the Minister Of Health, Medical Research Council delegates and the Chief Medical Officer to attend the INVEST in ME Conference 29th May 2009 London. The previous IiME conferences in 2008 attended by presenters and delegates from 13 countries, from Europe, USA, Australia, New Zealand and South Korea demonstrated that “PROVEN BIOLOGICALMARKERS & TREATMENTS FOR SOME SUB TYPES OF ME/CFS ARE ALREADY THERE!” Now the challenge is for the Chief Medical officer, the Medical Research Council and the Government to take up the challenge laid down by the conference in 2008 and commit to a national strategy of biomedical research into ME, without any conditionsor provisions for enforcing the psychosocial model to be in corporated.”
Read the Government’s response
Thank you for your e-petition. I apologise for the delay in replying. Ministers and the Chief Medical Officer receive a large number of invitations from stakeholders, pressure groups and individuals to attend meetings and events. Regrettably, it is not possible to attend the vast majority of these events.
The Medical Research Council is an independent organisation and it would therefore not be appropriate for the Prime Minister to instruct it.
More generally, the Government recognises chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) as a debilitating and distressing condition. CFS/ME is a chronic illness and health and social care professionals should manage it as such.
The Department of Health funds research for health policy development, clinical and applied health research in the NHS, and the NHS costs incurred in supporting research funded by other bodies such as the research councils and charities. The Department’s research budget for 2009/10 is £896million. Details of individual NHS-based projects, including some concerned with CFS/ME, are on the UK Clinical Research Network Portfolio database at www.nihr.ac.uk. Some of these projects receive external funding from research councils and charities.
There have been some recent findings about a genetic basis of CFS/ME that are providing extremely valuable insights into the causes of, and possible therapies for, the condition. Clearly, these are early research findings that at present have no direct relevance to any predictive or diagnostic gene test for these conditions. However, the Department of Health continues to keep such developments under review and there are well-established mechanisms to evaluate new genetic findings and ensure their proper implementation across the NHS.
http://www.number10.gov.uk/Page19853
Link to FULL Sky News item prior to a scientific think tank meeting on M.E. in Norway. A former City worker describes how the illness has impacted on her and Dr Jonathan Kerr says scientific collaboration is necessary to validate the biological abnormalities which have been found. Action for M.E.’s Nadia Conway is also interviewed.