The Guardian's Scott Jordan Harris: How many more people have to die before 'chronic fatigue syndrome' merits properly funded biomedical research?

Scott Jordan Harris guardian.co.uk, Friday 30 March 2012: On Sunday 18 March, Emily Collingridge, a beautiful 30-year-old activist and author, died after she was apparently no longer able to struggle against the chronic illness that had afflicted her since she was six. Major news organisations have all but ignored her death – the death of a noteworthy campaigner while suffering from the very condition she tried to persuade the world actually existed – just as they continually ignore so many important stories about the illness she had.

That illness is a neurological condition called myalgic encephalomyelitis or ME. There are many who think it is not real and many others, even within the medical profession, who think it is a psychological condition best treated with enforced exercise, which only worsens its effects. Even those doctors and lay people who acknowledge the illness often refer to it by the ridiculous name "chronic fatigue syndrome", which is almost as damaging to ME sufferers as the symptoms we suffer.

Fatigue is what a person feels after a hard work day or an intense session at the gym. It is a gentle tiredness that makes the back ache slightly and the eyelids a little heavy. It is cured by a nap or a reviving espresso. Collingridge was beyond bedridden. She was crippled by incessant agony and dependent on morphine. She was fed through a tube and her body couldn't cope with noise, light or movement. She was doubly incontinent and experienced periods of both blindness and paralysis.

Around a year ago, she wrote, "I have come very close to dying on more than one occasion. If you met me you may well think I was about to die now." She is now dead. To call the illness that savaged her "chronic fatigue syndrome" is like calling stomach cancer "chronic upset tummy".

Remarkably, she was – in her healthier periods – able to write a book called Severe ME/CFS: A Guide to Living, which is an invaluable text for many ME sufferers. It is published by AYME, the Association for Young People with ME, of which Collingridge was a prominent member. Her most important work, though, was her appeal for adequate biomedical research into ME.

I recently wrote a piece for the website of the Chicago Sun-Times, discussing both my history of ME and my reactions to the new documentary Voices from the Shadows. For anyone who wishes to understand the agony ME can inflict, and the dangerous ignorance endured by many who have it, the film is a must-see. One of the ME sufferers it profiles is Sophia Mirza, the first person in Britain whose death was officially listed as being caused by chronic fatigue syndrome. Another is my late friend, Lynn Gilderdale, whose mother assisted in her suicide after Lynn's condition became unendurable.

Both Mirza and Gilderdale suffered – and perhaps died – because of the unforgivable actions, and also the unforgivable inaction, of members of the medical profession. Mirza was committed to a mental institution to treat an illness that was purely physical and never recovered from the damage that did. Gilderdale, too, was referred to a psychiatrist when she needed physicians working from the results of cutting-edge studies. The question we must ask is obvious: how many young people like them, and like Collingridge, have to die before their illness is taken seriously and huge, well-focused efforts are made to cure it through properly funded biomedical research?

Collingridge was a great light for thousands of victims of severe ME whose lives pass in almost total darkness. It is essential that her tragedy is not overlooked. We must all understand that the cause she championed in life – the urgent need for proper recognition of, and research into, ME – is made even more urgent by her death.

The Sun's Lynsey Haywood: ME – sometimes called Chronic Fatigue Syndrome – is a severely debilitating illness

LYNSEY HAYWOOD speaks to three people who tell us why these two illnesses are far more serious than most people realise.




SOPHIE ELLIS has suffered from ME since she was nine. She can't even watch TV or send a text and is fed through a tube.

She has not been downstairs in her house in Banbury, Oxon, for more than a year.

She lives with dad Mark Ellis, 52, a financial adviser, and mum Karen, 52, her full-time carer. Mark says:

When Sophie was nine she got a fairly typical virus which lasted two to three weeks.

But she never really recovered.

She suffered crippling gastric problems, heartburn and acid reflux, as well as a general lack of energy.

The GPs we saw tried to deal with the symptoms rather than the root cause.

As parents we had no knowledge of ME, so while seeing countless consultants we never thought to ask about it.

We simply thought it was something people got in the Eighties and it made you feel like you had flu.

We certainly didn't know you could treat it.

Sophie was getting worse and worse to the point where she couldn't eat and was increasingly bedbound.

Then, about two years ago, one consultant suggested ME and, after researching it ourselves, it all made sense.


Sensitive to light ... Sophie lies in a darkened room
It took up to six years to get an accurate diagnosis but sadly, by then, having pushed herself so hard for six years, Sophie's batteries were completely run down.

It felt like we'd missed our window of opportunity when we could have done something.

Now, Karen has given up her job as a shelf-stacker at Sainsbury's to be her full-time carer.

The slightest thing exhausts Sophie and because it's neurological, it affects every part of her body.

She can't watch TV or use a laptop because she's light intolerant. It makes her dizzy or ill.

She can't read more than a couple of times a day and she hasn't been downstairs for more than a year.

We can't speak to her for more than a few minutes at a time because it drains her energy.

Her room has to be dark and she needs help getting to the loo as she's too wobbly on her feet.

She can read texts but can't type herself because her brain can't co-ordinate her fingers.

Eating and chewing is now almost impossible for her, so she has a tube which feeds liquidised food through her nose, but she can drink herself.

We're trying to step up the little achievements she can manage each day – exposing her to a little more light, getting her to eat a little food herself.

But if we push her too hard she relapses badly and we're back at square one.

We can't have visitors to the house at all now because of any potential disruption. The best Karen and I can hope for in terms of our own lives is a walk and a coffee when Sophie's brother Matt, who is 29, comes round.

This makes Sophie feel terribly guilty too – ME impacts hugely on everyone.

But throughout Sophie's been bright and cheerful, always with a smile on her face.

University of Zurich: It is relatively certain that MS is an autoimmune disease in which the body’s own defense cells attack the myelin in the brain and spinal cord

healthcanal.com, 27/02/2012: Damaged myelin in the brain and spinal cord does not cause the autoimmune disease Multiple sclerosis (MS), neuroimmunologists from the University of Zurich have now demonstrated in collaboration with researchers from Berlin, Leipzig, Mainz and Munich.

In the current issue of Nature Neuroscience, they therefore rule out a popular hypothesis on the origins of MS. The scientists are now primarily looking for the cause of the development of MS in the immune system instead of the central nervous system.

Millions of adults suffer from the incurable disease multiple sclerosis (MS). It is relatively certain that MS is an autoimmune disease in which the body’s own defense cells attack the myelin in the brain and spinal cord. Myelin enwraps the nerve cells and is important for their function of transmitting stimuli as electrical signals. There are numerous unconfirmed hypotheses on the development of MS, one of which has now been refuted by the neuroimmunologists in their current research: The death of oligodendrocytes, as the cells that produce the myelin sheath are called, does not trigger MS.

Neurodegenerative hypothesis obsolete
With their research, the scientists disprove the so-called “neurodegenerative hypothesis”, which was based on observations that certain patients exhibited characteristic myelin damage without a discernable immune attack. In the popular hypothesis, the scientists assume that MS-triggering myelin damage occurs without the involvement of the immune system. In this scenario, the immune response against myelin would be the result – and not the cause – of this pathogenic process.

The aim of the research project was to confirm or disprove this hypothesis based on a new mouse model. Using genetic tricks, they induced myelin defects without alerting the immune defense. “At the beginning of our study, we found myelin damage that strongly resembled the previous observations in MS patients,” explains Burkhard Becher, a professor at the University of Zurich. “However, not once were we able to observe an MS-like autoimmune disease.” In order to ascertain whether an active immune defense causes the disease based on a combination of an infection and myelin damage, the researchers conducted a variety of further experiments – without success. “We were unable to detect an MS-like disease – no matter how intensely we stimulated the immune system," says Ari Waisman, a professor from the University Medical Center Mainz. “We therefore consider the neurodegenerative hypothesis obsolete.”

Focus on immune system
The teams involved in the study want to continue researching the cause and origins of MS. “In light of these and other new findings, research on the pathogenesis of MS is bound to concentrate less on the brain and more on the immune system in future,” says Professor Thorsten Buch from the Technischen Universität München.

Literature:
Giuseppe Locatelli, Simone Wörtge, Thorsten Buch, Barbara Ingold, Friederike Frommer, Bettina Sobottka, Martin Krueger, Khalad Karram, Claudia Bühlmann, Ingo Bechmann, Frank L. Heppner, Ari Waisman and Burkhard Becher. Primary oligodendrocyte death does not elicit anti-CNS immunity. Nature Neuroscience. 26 February, 2012. Doi: 10.1038/nn.3062

University of Zurich

Dr. Fry Finds Protozoa in People with CFS (and FM, MS, ALS & RA)

betterhealthguy.com

Dr. Fry is doing some exciting work on a new biofilm-forming protozoan previously referred to as FL1953 and only recently renamed to Protomyxzoa rheumatica, a highly immunosuppressive microorganism. He refers to it as the premier pathogen.

I recently had the opportunity to attend a lecture by Dr. Stephen Fry MD as part of Dr. Klinghardt's recent "Beyond Lyme" conference. I'm still working on my notes from that event and will post them soon. In the meantime, I just listened to a radio interview from Dr. Fry which can be found here.

Some of the key points from the the radio interview:

FL1953 is a new, unique protozoan organism that is found in people with CFS, Fibromyalgia, Multiple Sclerosis, ALS, and Rheumatoid Arthritis.

People with Morgellon's also have evidence of the organism. In Morgellon's, Dr. Fry talked about this new protozoan possibly suppressing the immune system such that a fungal/mycelial condition then develops leading to the symptoms of Morgellons.
Dr. Fry discussed the use of Tetracyclines, Zithromax, Plaquenil and other options, but more interesting were his other recommendations. One of the future projects his lab is working on is to complete sensitivity testing of various therapies for this new protozoan.
Read more>>

ME vs CFS: More than just a name

Posted on February 27, 2012 by The M.E. Closet

ME vs CFS: More than just a name

For the first decade of my illness, I thought ME and CFS were different names for the same thing. I belonged to an online community of people with chronic illnesses, and CFS and ME were always lumped together into the same category. The Brits in the community were usually diagnosed with ME; the Americans with CFS. I assumed that CFS was the American term for ME.

When the term CFS began to be adopted in the UK, I was angry that such an inaccurate, trivial sounding name was being slapped on such a serious illness. I still, however, believed that ME and CFS were one and the same.

Then I started hearing that ME and CFS are two different things, and I became very confused. I have a diagnosis of ME, while my American partner was diagnosed with CFS two decades ago. We share many of the same symptoms, neurological abnormalities, and illness patterns. Do we have the same illness?

I started to do my own research, and that’s when I learned what each of these diagnoses truly means.

ME is a very specific neurological disease – ‘myalgic’ meaning ‘muscle pain’, and ‘encephalomyelitis’ meaning ‘inflammation of the brain and spinal cord’. ME is characterised by scientifically measurable damage to the brain stem initiated by a viral infection. It has many similarities to both MS and non-paralytic polio.

CFS is a term coined in the USA, which covers a whole spectrum of disorders, including ME. It is a wastebasket diagnosis for any illness involving a long period of “medically unexplained fatigue”. (Of course, ‘medically unexplained’ doesn’t mean anything if the correct diagnostic tests have not been performed. Most fatigue can be explained if you look hard enough for its cause.) A significant proportion of people with a CFS diagnosis do indeed have ME, but the CFS criteria are so broad that people with post viral fatigue syndrome, depression, nutrient deficiencies, or even undetected cancers will fall into this category.

The term CFS essentially means: ‘We don’t know what’s wrong with you, and we can’t be bothered to find out. Here’s a label to keep you quiet.’

CFS screws everybody except medical insurance companies, for whom it protects against expensive disability claims. Being diagnosed with CFS is like being thrown in the trash. How many people with treatable illnesses are tossed into the CFS bin, losing years of their lives to an ailment that could be cured? Nobody knows. How many cancer patients become terminally ill, after doctors slap a CFS diagnosis on them and stop looking for what’s actually wrong? Again, nobody knows. How many people with severe depression are left without the right support, after being thrown into the CFS wastebasket? I could go on and on.

Most of all, the term CFS screws people with ME.

When a study is done on ‘CFS patients’, it is entirely possible (and likely) that not a single patient in that study actually has ME. However, the results are then applied to ME as if the two were synonymous, often with devastating consequences. For example, a researcher could cherry-pick people with depression from the CFS wastebasket, treat them with graded exercise therapy (GET), get good results, and then declare exercise as a viable treatment for ME. GET might be a valid treatment for depression or post-viral fatigue, but it can cause severe and permanent damage to ME patients.

Worse, the diagnostic criteria for CFS states that symptoms have to be present for six months before a diagnosis can be given. If the brain stem damage in ME patients is caused by a ‘hit and run’ virus (and given the similarities between ME and non-paralytic polio, and the rise of ME coinciding with the distribution of the polio vaccine, it seems likely), then at six months, you are three months beyond the latest date that the virus is still present in the body. ME can be diagnosed in weeks, if the correct tests are carried out. By making ME patients wait six months for a diagnosis, you lose that precious window of time in which researchers could identify the infectious agent that triggers ME, and potentially find a cure. Could anti-viral drugs, prescribed early enough, limit further brain stem damage and give ME patients a better quality of life? As long as the six month rule is adhered to, we will never know.

If you’re not angry about the invention of CFS as a diagnostic wastebasket, you should be. It’s not just the human cost. Even if you’re completely unaffected by CFS or ME, the cost to the state is screwing you, too. Your tax money is paying for pseudo research that is of no real benefit to patients, and that could ultimately make patients sicker and more costly to the state.

(Just to muddy things further, in the UK, ‘ME’ has now been tacked onto ‘CFS’ to form ‘ME/CFS’. This is as unhelpful and nonsensical as calling it ‘Parkinson’s/CFS’ or ‘Cancer/CFS’. Now sufferers of myalgic encephalomyelitis are forced to use the term ‘Neuro ME’ to try and differentiate this specific neurological illness from other disorders covered by the woolly ME/CFS criteria. ‘ME’ has become a meaningless acronym.)

I was taken in by this scam for many years. Although my official diagnosis is ME (and was later amended by an infectious diseases specialist to ‘post encephalitic damage caused by a polio vaccination’), I was led to believe that CFS and ME were interchangeable. I always disliked the term ‘CFS’ because it had so little relevance to my illness. Now I know that the problem is far more extensive than an inappropriate name. That’s just the tip of the iceberg. You could call ME ‘Arsewipe Disease’ and it would still be the same illness. The bigger problem is that a distinct, measurable, physiological disease is being lumped together with a vast spectrum of different disorders, that happen to fit a huge, muddy criteria. This is what CFS is, and it is screwing us all.