LIVING WITH ME

In 2009, a newly discovered human retrovirus, xenotropic murine leukemia virus (MuLV)-related virus (XMRV), was reported by Lombardi et al. in 67% of persons from the US with chronic fatigue syndrome (CFS) by PCR detection of gag sequences.

Although six subsequent studies have been negative for XMRV, CFS was defined more broadly using only the CDC or Oxford criteria and samples from the US were limited in geographic diversity, both potentially reducing the chances of identifying XMRV positive CFS cases. A seventh study recently found polytropic MuLV sequences, but not XMRV, in a high proportion of persons with CFS.

7thspace.com

Geraldine O’Sullivan-Hogan suffered agony every month for 28 years, says Joy Orpen, and she is convinced doctors would have treated her more seriously had she been a man.
Having a chronic condition is bad enough, but when the medical profession fails to take it seriously, then a grave injustice is done. This, it would seem, is quite common in an illness that is exclusively confined to women.

Endometriosis is intrinsically linked to the menstrual cycle. It occurs when the endometrium — the tissue which lines the uterus — grows elsewhere, usually within the pelvic region. It behaves in much the same way as the lining of the uterus does, thickening and then bleeding during the menstrual cycle in response to hormonal changes.

independent.ie

By Nina Sen
Mononucleosis – womancoldflu
Click to Enlarge

Mononucleosis may increase the risk of developing chronic fatigue syndrome in teenagers, according to a study.

Previous studies suggested that about one in ten adults with acute infectious mononucleosis go on to develop chronic fatigue syndrome, Dr. Ben Z. Katz, of Northwestern University Feinberg School of Medicine, Chicago, and colleagues write.

Katz and other researchers monitored more than 300 teenagers with the disease. About 13 percent of the original study developed chronic fatigue syndrome. At a 12-month follow-up visit, 7 percent had chronic fatigue syndrome, and at 24 months, chronic fatigue syndrome persisted in 4 percent.

thirdage.com

The silver statue was given pride of place on the mantelpiece and the inscription was read over and over again. Carlisle United Supporters’ Club Player of the Year 1988-89 – Nigel Saddington.

Saddington had a special place in the hearts of the Brunton Park faithful and they’d just given the Carlisle skipper the ultimate accolade as a reward for the best season of his career in which he’d clocked up his century of appearances for the club.

newsandstar.co.uk

by Elizabeth Smythe

A study by British scientists found that cognitive behavioural therapy (CBT) can help ease the symptoms of Myalgic Encephalomyelitis (ME), BBC News has reported.

The biggest ever study of ME – also known as chronic fatigue syndrome (CFS) – has found that sufferers can help alleviate their symptoms if treated with exercise, CBT, and generally encouraged to do more than they think they can.

The aim of the study was to treat the symptoms, not the cause – which remains unknown.

Read more: CBT can help chronic fatigue sydrome – Hypnotherapy News – The Therapy Lounge
Under Creative Commons License: Attribution.

thetherapylounge.com

The Daily Telegraph reported that “exercise and therapy can help ME sufferers”. Several other news sources reported on research which has shown that behavioural therapy and exercise can be effective in helping people with ME, also known as chronic fatigue syndrome (CFS).

This well-designed study used established methods and was rigorously conducted. The year-long trial randomly assigned 641 people with CFS to receive one of four treatments: specialised medical care, or specialised medical care in combination with cognitive behavioural therapy (CBT), graded exercise therapy, or what the researchers called adaptive pacing therapy (helping people adapt to their illness).

nhs.uk

By Amy Dockser Marcus

The debate over what XMRV may do to humans continues. But at least in a small group of monkeys, one thing is clear, according to a new study.

“The virus causes chronic, persistent infection,” says Robert Silverman of the Cleveland Clinic, a co-author of the paper, which was published online yesterday in the Journal of Virology. Moreover, the new research suggests that in these monkeys, at least, the virus can be difficult to detect in blood, even though it’s taken root in the body.

blogs.wsj.com

Moms Health Club’s theme for this year is “The Good Health And Wealth Of Ghana Starts With Me” this is a follow up to the theme for 2010 which was “Your Health, Your Responsibility – Take Control”. My goal is not to make readers experts in healthcare but to raise awareness and emphasize the point that we are all in a position to improve our health.

One will hardly complete a day’s work at the clinic without talking to a patient who complains of fatigue. The whole world appears to be in the “fast lane” and it is almost fashionable to complain of fatigue. Colette Bouchez refers to this whole fatigue syndrome as “a global energy crisis that has nothing to do with oil” and I totally agree with her. We all do experience fatigue once a while but when we know the likely cause(s) then we are in a position to make the right choices to correct this. Many of us may confuse fatigue with weakness and this may throw our diagnosis in a totally different direction. Always remember that the information we give our healthcare professional goes a long way to determine the conclusion he/she will draw.

businessghana.com

This is an interesting video clip from a BBC programme, which includes the medicinal use of cannabis for pain relief by someone who has ME.

http://www.meassociation.org.uk/?p=4756

Start with extreme exhaustion that doesn’t get better, even with a lot of rest. Add in muscle and joint pain, memory problems, headaches, sleep problems, sore throat and tender lymph nodes. People with Chronic Fatigue Syndrome (CFS) suffer from a complex and pervasive illness that can cause some or all of these symptoms.

Poorly understood by scientists and sufferers alike, CFS affects the brain and multiple body systems. According to the Centers for Disease Control, more than 1 million Americans have the disease. The cause of CFS, also called myalgic encephalomyelitis (ME) and chronic fatigue and immune dysfunction syndrome, remains a mystery. And without understanding a cause, it is nearly impossible to definitively diagnose or effectively treat.

Chronic Epstein Barr virus infection, Lyme disease, total allergy syndrome, multiple chemical sensitivity syndrome and bodywide yeast infection have been implicated as causative agents in the past, but research has not borne out those hypotheses. Research focusing on other infectious agents is promising but incomplete.

Researchers at Stanford University are among those looking for answers and finding some solutions.

losaltosonline.com

From PLoSone, the Public Library of Science open access journal, 23 February 2011. For weblinks to the cited references and access to the listed pdfs, read directly at the online journal.

http://www.meassociation.org.uk/?p=4737

The human brain is a complicated thing that often works against us, especially in neurological conditions like fibromyalgia and chronic fatigue syndrome.

One way it can cause problems for us is by associating memories with physiological and emotional reactions, then making us re-live those emotions when the memory is triggered. My brain did this to me recently when I walked into a particular grocery store. I know — grocery shopping is often a nightmare for us, but this reaction was particularly strong and took me by surprise.

about.com

From The Guardian, 22 February 2011 (report by Amelia Gentleman).

Welfare reform expert Professor Paul Gregg says a rushed roll out of the work capability assessment will cause more anguish

One of the architects of the new sickness benefit system has warned it would be a mistake to start introducing it nationwide from the end of this month because of serious ongoing problems with the medical test designed to assess whether claimants are genuinely sick or disabled.

http://www.meassociation.org.uk/?p=4720

When overworked young adults hear someone mention chronic fatigue syndrome, many will think they have it.

But while chronic fatigue is a common malady, chronic fatigue syndrome is of a different magnitude all together. Patients with chronic fatigue — which lasts more than six months and is not relieved by rest — will have only that, said Dr. Dennis Ang, a rheumatologist at Indiana University School of Medicine.

indystar.com

From Retrovirology, 22 February 2011.

Serologic and PCR testing of persons with chronic fatigue syndrome in the United States shows no association with xenotropic or polytropic murine leukemia virus-related viruses

http://www.meassociation.org.uk/?p=4717

by M Hamaguchi, et al.
February 9, 2011

This study seeks to estimate the prevalence of chronic fatigue syndrome (CFS) and assess the characteristics of CFS in a community population in Japan using laboratory tests and questionnaires for lifestyle, fatigue states, and depression states. The design of this study is a cross-sectional observational study.

The setting of this study is a medical health checkup program in a general hospital. This study was conducted with 1,430 Japanese (867 men and 563 women), 20 to 78 years of age.

prohealth.com

This appeared on The Guardian letters page, 24 February 2011.

ME – the truth about exercise and therapy

Reporting on the PACE trial of treatments for ME/CFS by Professor White and colleagues, Sarah Boseley (Report, 18 February) writes that patient groups “insist it is a physical disease, which probably has a viral cause”.

Research co-funded by The Young ME Sufferers Trust and published by Dundee University last year revealed abnormalities in children’s blood consistent with persistent viral infection. The trust deals with childhood cases so severe that sufferers cannot swallow and have to be tube-fed. Too weak to walk, they need to be carried and suffer unbearable neuropathic pain.

 http://www.meassociation.org.uk

TRIAL SHOWS THAT COGNITIVE BEHAVIOURAL THERAPY AND GRADED EXERCISE THERAPY ARE SAFE AND EFFECTIVE TREATMENTS FOR CHRONIC FATIGUE SYNDROME

Despite previous evidence that both cognitive behavioural therapy (CBT) and graded exercise therapy (GET) can be effective treatments for chronic fatigue syndrome (CFS), some patients’ organisations have reported that these treatments can be harmful and instead prefer pacing and specialist medical care (SMC). The PACE trial, published *Online First* and in an upcoming /Lancet/, shows that while CBT and GET have positive effects on CFS when combined with SMC as compared to SFC alone, adaptive pacing therapy (APT) with SMC is no more effective than SMC alone. The *Article*is by Profs Peter White (Barts and The London School of Medicine, UK), Trudie Chalder (King’s College London, UK), Michael Sharpe (University of Edinburgh, UK) and colleagues. The trial is funded by the UK Medical Research Council and various departments of UK governments.

http://www.meassociation.org.uk/?p=4621

University of Hull Professor of Psychology Rhona Johnston argues against the widespread belief that ME/chronic fatigue syndrome is a psychological condition – a misconception that’s “good for creating work for psychiatrists” but not good for people with this horrible illness who are blamed for it simply because it is not understood.

prohealth.com

Ian Swales, Lib Dem MP for Redcar, tabled a question about the accuracy of the WHO classification for ME/CFS which was contained in the reply given by Minister for Health Care Services Paul Burstow to his Private Member’s Debate in Westminster Hall on 2 February 2011.

Mr Swales asked the Secretary of State for Health pursuant to the Minister of State’s contribution on 4 February 2011 [sic], Official Report, column 327WH, on Myalgic Encephalomyelitis, what recent representations his Department has received on the definition of CFS/ME.

 http://www.meassociation.org.uk

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The medical community has been aware of fibromyalgia (FMS) and chronic fatigue syndrome (ME/CFS) for decades, but we have incredibly few answers. What causes these illnesses? Why do they tend to run in families? What are the underlying mechanisms and how can we correct them? Are they communicable? How can we prevent them?

We don’t have definitive, widely accepted answers to a single one. We don’t have diagnostic tests, and ME/CFS doesn’t even have any FDA-approved drugs.

about.com

The Countess of Mar, who was at the meeting of the All Party Parliamentary Group on ME at Westminster yesterday, has taken two important parliamentary initiatives in the House of Lords in relation to issues that were discussed at the meeting.

http://www.meassociation.org.uk/?p=4592

Musical star MICHAEL CRAWFORD has told how he overcame chronic fatigue syndrome to make his comeback in ANDREW LLOYD WEBBER’s WIZARD OF OZ revamp.

The British singer/actor returned to London’s West End in the new production on Monday (07Feb11) after five years away from the spotlight battling myalgic encephalopathy (ME).

contactmusic.com

From The Press, York, 14 February 2011 (story by Richard Catton in his weekly column looking at health and wellbeing issues).

UNLESS you are made of steel, it is likely that at some time in your life you have been struck down by a bad case of cold or flu or perhaps a viral infection.

Thankfully, for the majority of us, we are over the symptoms within a week or two, whether it’s with the help of drugs or by letting the illness run its course.

But what if the symptoms don’t go away; imagine if the symptoms went on for months or even years; you can’t sleep and every time you attempt to do the simplest tasks, you are left physically and mentally exhausted.

 http://www.meassociation.org.uk

The PACE Trials have recently been published and demonstrate clearly what is wrong with the present way that vested interests have manipulated the establishment view about myalgic encephalomyelitis (ME/CFS) and forced tens of thousands of patients and their families to live in a continual state where no proper research is sanctioned, good science is denied and where pointless and biased studies are funded by a system which denies human rights.

investinme.org

One of the most common complaints I hear from people with fibromyalgia and chronic fatigue syndrome,especially this time of year, is how awful cold weather can be.  The cold seems to get into our bones and make everything tighten up and ache.  The cold can make our skin hurt, and when we get chilled it can be ridiculously hard to warm back up.

chronicfatigue.about.com

In March 2003 the House of Commons Select Committee on Science and Technology produced its Report “The Work of The Medical Research Council” (HC 132) in which MPs issued a damning judgment on the Medical Research Council (MRC), lambasting it for wasting funds and for introducing misguided strategies for its research. 

The Select Committee had received seven representations about the MRC’s refusal to heed the biomedical evidence about ME/CFS. MPs found evidence of poor planning and of focusing on “politically-driven” projects that have diverted money away from top-quality proposals. 

The unprecedented attack was the result of a detailed probe into the workings of the MRC. In particular, MPs questioned why the MRC was content to support policies and projects that are likely to perpetuate such criticism.

investinme.org

This notice was issued by the UK Department for Transport, 14 February 2011

Blue Badge Reform

The Government has today made an announcement on the most significant reform to the Blue Badge scheme in forty years.

http://www.meassociation.org.uk/?p=4547

For a long time Invest in ME have been critical of the workings, decisions and policies of the Medical Research Council.

Given that biomedical research, including gene research (which has shown that in people with ME/CFS, there are more gene abnormalities present than are found in cancer sufferers) has demonstrated that the psychiatrists who hold such sway at the MRC are comprehensively wrong about ME/CFS, nowhere could such criticism be more appropriate than in relation to the PACE Trial.

investinme.org

When you’re talking about Chronic Fatigue Syndrome, the word “progress” is not often spelled with a capital “P”. That’s because any progress is excruciatingly slow.

empowher.com

DWP press release: Fitness for work assessment continues to be improved.

This new information from the DWP is particularly important for people with ME/CFS who are currently receiving Incapacity Benefit (ICB) and are going to be re-assessed for Employment and Support Allowance (ESA) eligibility this year.

Despite the reassuring statement from the DWP, some of the changes to the Working Capability Descriptors in the Statutory Instrument (= seconday legislation) will probably make it even more difficult for people with ME/CFS to successfully claim ESA.

 http://www.meassociation.org.uk

No one could tell Karen LeVier why she was not shaking the flu. Not only did her throat feel sore and her sinuses infected, she had such overwhelming fatigue she could not shower. The malaise continued for a year and a half, during which LeVier, a once healthy woman in her 30s, stopped working and sold her house.

No one could pin down a diagnosis, and over the next eight years, LeVier stumbled through months when she could make it through the day but not have enough energy to cook dinner.

indystar.com

The MRC has recently announced its intention to allocate £1.5 million for ME research

investinme.org

From The Independent, 18 February 2011 (story by health editor Jeremy Laurance).

Got ME? Just get out and exercise, say scientists

The UK’s largest study of treatments for chronic fatigue syndrome has provided the first definitive evidence of what helps those who suffer from the disabling condition that affects 250,000 people in the UK.

The best therapies are those which help patients test the limits of their capacity, such as by gradually increasing the amount of exercise they take, the research shows. Therapy aimed at helping patients live within the limits of their capacity, by balancing rest and activity, is much less effective.

But patients’ support groups angrily rejected the findings yesterday, saying they were “surprised and disappointed” by the “simplistic” results.

 http://www.meassociation.org.uk

On Monday,  Belgian endocrinologist Francis Coucke appeared before the ‘Orde van Geneesheren’, a national body responsible for enforcing standards within the medical profession. Dr Coucke risks a two year suspension from the profession because his treatment (gamma globulines and home TPN) of patients with the chronic fatigue syndrome (CFS) has been deemed non-scientific: it has not been proven to work in large studies. Last year, he and a neuropsychiatrist colleague were required to pay a 635,000 euro fine for prescribing medicines not licensed for CFS to CFS patients. The fine was imposed even though special authorization for the prescriptions had been granted by the medical advisor to the national healthcare service.

CFS is a controversial condition. Internationally accepted criteria for CFS are: chronic, disabling fatigue for six months or more, where the fatigue is not the result of excessive ongoing activity, is unresponsive to rest, is associated with other symptoms (such as sleep changes, poor concentration, muscle and joint pains) and is not caused by any detectable underlying medical or severe psychiatric condition.[1] There is, however, little agreement about the nature of CFS, its etiology, or even its existence. One rather widely accepted view is that it is caused through stress but can be triggered by an infection, a difficult delivery, or a whiplash. Others, like Dr. Coucke, think it has physical causes, most of which could be addressed if looked for and found. But many think it is a purely psychosomatic condition. In a recent Belgian newspaper article about the Dr Coucke case, a Belgian internist from the University of Leuven calls doctors who think CFS has physical causes ‘quacks’.

blog.practicalethics.ox.ac.uk

At the 5th Invest in ME International ME/CFS Conference in London in May Invest in ME announced that we had entered into discussions with the University of East Anglia to instigate a research facility for ME.

Discussions have continued since the conference and we have decided to publicise our attempt to set up this facility.

investinme.org

No Xenotropic Murine Leukemia Virus–related Virus Detected in Fibromyalgia Patients

Joanna Luczkowiak, Olalla Sierra, Jorge Juan González-Martín, Gabriel Herrero-Beaumont, and Rafael Delgado

http://www.meassociation.org.uk/?p=4510