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Chronic Fatigue Syndrome / Myalgic Encephalomyelitis


Aug 19, 2003
Chronic fatigue syndrome researchers offer physical evidence
24 Aug 2004

A University of Alberta study has verified that there is physical evidence for those who suffer from chronic fatigue syndrome (CFS), giving new weight to the often stigmatized and misdiagnosed disorder. Research just published in the "International Journal of Psychophysiology" determined that, using independent criteria, CFS can be distinguished from depression--two disorders that share many of the same symptoms.

CFS is an often debilitating disorder, characterized by a constellation of symptoms including fever, sore throat, headache, muscle weakness, myalgias, post-external malaise, sleep and cognitive disturbances. The level of disability varies for people with CFS, but some individuals find they are unable to return to work or function normally on a day-to-day basis. Unfortunately, many of these symptoms are subjective in nature and are difficult to quantify or confirm, says Hannah Pazderka-Robinson, the lead author on the study. Not only does the stigma attached with the disorder play an emotional toll on the patient, but it has implications for insurance claims as well.

"There are a number of medical professionals who don't believe that CFS exists in the first place," said Pazderka-Robinson. "The problem is, both CFS and depression are characterized by very similar profiles. Imagine a patient who approaches a doctor and tells him they feel depressed and tired all the time.

"Since depression shows a high co-morbidity with CFS, some CFS patients are often given antidepressants--that don't work or work poorly, since they do not address the underlying condition. Again, when these medications don't work, physicians sometimes jump to the conclusion that there isn't really anything, physically, wrong. Obviously, both misdiagnosis and the tendency for doctors to treat these patients as if they're not really sick can be extremely distressing. It can also undermine the patient's trust in the doctor and make them less likely to seek treatment if the condition worsens."

The most significant part of the research was to provide independent verification for CFS sufferers that these patients are different than normal controls and they're not "just depressed," said Pazderka-Robinson.

Numerous psychological investigations have attempted to differentiate these groups, with limited success. The U of A study was the first of its kind to use electrodermal activity--electrodes were placed on each hand--to investigate the differences among CFS, depression patients and healthy controls. Using tone and light stimuli, the results showed that CFS can be discriminated from those with major depression by recordings of skin temperatures and electrodermal activity.

Moreover, the profile of CFS patients is clearly different from normal controls, suggesting there is a clear biological basis to the condition.

Pazderka-Robinson completed this study with researchers from the University Centre for Neuroscience at the University of Alberta and from Alberta Hospital.

Contact: Phoebe Dey [email protected] 780-492-0437 University of Alberta
That is good news, hopefully the first step towards a cure. It's a very misunderstood illness. :)
Chronic fatigue syndrome, medication not effective
08 Sep 2004

The drug galantamine (used for treatment of mild to moderate dementia) did not demonstrate a clinical benefit in treating chronic fatigue syndrome when compared with placebo, according to a study in the September 8 issue of JAMA.

Chronic fatigue syndrome (CFS) is a complex disorder characterized by long-term disability, according to background information in the article. There is no established pharmacological treatment for the core symptoms of CFS. Galantamine hydrobromide has pharmacological properties, including improving sleep quality, that researchers have speculated may benefit CFS patients. A pilot trial with CFS patients suggested that the drug might be helpful in CFS.

C.V. Russell Blacker, F.R.C.Psych., M.D., of the University of Exeter, England, and colleagues conducted a study to determine the efficacy and tolerability of galantamine hydrobromide in patients with CFS. The randomized, double-blind trial was conducted from June 1997 through July 1999 at 35 outpatient centers in Western Europe and the U.S. The study included 434 patients with a clinical diagnosis of CFS. A total of 89 patients were randomly assigned to receive 2.5 mg of galantamine hydrobromide; 86 patients, 5.0 mg; 91 patients, 7.5 mg; and 86 patients, 10 mg (these patients received medicine in the tablet form three times per day); a total of 82 patients received matching placebo tablets three times per day.

The researchers found that after 16 weeks there was no statistically significant differences between any of the galantamine or placebo groups in clinical condition, as measured by various tests and surveys.

"The lack of effect of galantamine on cognitive performance was surprising given the extent of the patients' cognitive impairment at baseline," the authors write. "In conclusion, in this study, galantamine did not provide a significant clinical benefit in the treatment of patients with CFS."

(JAMA. 2004; 292:1195-1204. Available post-embargo at JAMA.com)

Editor's note: This research was sponsored and funded by Shire Pharmaceutical Development Ltd.,
Andover, England. Dr. Blacker received research support from Shire Pharmaceutical Development Ltd.

Editorial: Pharmacotherapy of Chronic Fatigue Syndrome – Another Gallant Attempt

In an accompanying editorial, Stephen E. Straus, M.D., of the National Center for Complementary and Alternative Medicine, National Institutes of Health, Bethesda, Md., examines the results of the trial conducted by Blacker et al.

"On its face, the study appears to be another in a virtually unbroken series of failed drug trials for CFS. Yet, by many criteria, the study is a resounding success. It pursued encouraging pilot data with a cholinesterase [an enzyme] inhibitor approved for the management of Alzheimer disease and its plausible underlying hypothesis that defects in [certain types of neurologic] pathways could also underlie some CFS symptoms. The present data further clarify, at least by exclusion, the pathogenesis of CFS."

"Fortunately for the science, but not for the patients, the results were unequivocal in that galantamine was well tolerated but yielded no meaningful benefits to any subset of patients. Yet the study reaffirmed the importance and feasibility of studying CFS rigorously, even if it remains a poorly understood and controversial illness," Dr. Straus concludes.

(JAMA. 2004; 292:1234-1235. Available post-embargo at http://www.jama.com)

Contact: C.V. Russell Blacker, F.R.C.Psych., M.D.
[email protected]
JAMA and Archives Journals Website


thanks for this.

i know someone who suffers from CFS.

horrible debilitating illness.

have passed on the article.

(it's amazing what you find on the FTMB innit??)

mal f
Another Study Links Mouse Retroviruses To Chronic Fatigue
24 Aug 2010

Another study by US researchers has discovered gene sequences of a family of mouse retroviruses in a high proportion of patients with Chronic Fatigue Syndrome (CFS), a serious systemic illness of unknown cause, also known as Myalgic Encephalomyelitis (ME); the researchers also found the same gene sequences in a small proportion of healthy blood donors.

However, the investigators cautioned that although their findings support the idea of a link between murine leukemia viruses (MLV) and CFS, more studies are needed to prove whether they actually cause the illness and also whether their presence in healthy blood donors constitutes a threat to the national blood supply.

The investigators were from the US Food and Drug Administration (FDA), the National Institutes of Health, and Harvard Medical School, and wrote about their findings in the 23 August online issue of the Proceedings of the National Academy of Sciences.

MLV is a type of retrovirus that causes cancer in mice. A retrovirus has a genome coded in RNA. When it invades the host cell its RNA converts to DNA, whereupon it buries itself in the host's DNA and replicates using the host cell's resources.

The debate about whether MLV-like retroviruses are strongly linked to CFS is fuelled by conflicting evidence: at least two North American studies have suggested there is a link between XMRV, xenotropic MLV-related virus (including one that found the viral sequences in prostate cancer patients), while separate reports from Europe state there is little if any evidence of XMRV being present in patients with either CFS or prostate cancer.

The authors referred to some of this evidence in their background information:

"A recent study identified DNA from a xenotropic murine leukemia virus-related virus (XMRV) in peripheral blood mononuclear cells (PBMCs) from 68 of 101 patients (67%) by nested PCR, as compared with 8 of 218 (3.7%) healthy controls."

"However, four subsequent reports failed to detect any murine leukemia virus (MLV)-related virus gene sequences in blood of CFS patients," they added.

However, in their own investigation, the researchers found several different MLV gene sequences in blood samples taken from 32 out of 37 (87 per cent) patients with CFS, and in only 3 out of 44 (7 per cent) of healthy blood donors.

They confirmed the MLV-like sequences via DNA sequencing on all positively amplified samples.

They also pointed out that unlike previous studies there was wide genetic diversity among the MLV-like viruses they found:

"In contrast to the reported findings of near-genetic identity of all XMRVs, we identified a genetically diverse group of MLV- related viruses," they wrote.

The researchers concluded that:

"Further studies are needed to determine whether the same strong association with MLV-related viruses is found in other groups of patients with CFS, whether these viruses play a causative role in the development of CFS, and whether they represent a threat to the blood supply."

In a separate commentary, scientists from the Institute of Molecular Genetics at the University of Montpelier in France, and the Department of Medicine at the University of Alberta in Canada, said the current evidence suggests a variety of MLV can be found in North Americans with and without CFS.

"To add to this bewilderment, it is likely that more than one environmental agent impacts on the development of both CFS and prostate cancer," they wrote, and said it made sense therefore to push for extensive case-control studies.

And, they added, because we don't have any robust theories that "prove a causal association with a prevalent agent and a chronic disease with genetic predisposition", perhaps it may also be appropriate to conduct interventional studies, and they refer to the example of the discovery of Helicobacter pylori as a cause of peptic ulcer which was only established when an intervention study with antibiotics cured the disease.

"Detection of MLV-related virus gene sequences in blood of patients with chronic fatigue syndrome and healthy blood donors."
Shyh-Ching Lo, Natalia Pripuzova, Bingjie Li, Anthony L. Komaroff, Guo-Chiuan Hung, Richard Wang and Harvey J. Alter.
Proceedings of the National Academy of Sciences, Published online before print 23 August 2010
DOI: 10.1073/pnas.1006901107

Related articles:

-- Retrovirus Linked To Chronic Fatigue Syndrome (Oct 2009)
-- New Virus Is Not Linked To Chronic Fatigue Syndrome, Suggests UK Research (Jan 2010)

Additional source: FDA.

Written by: Catharine Paddock, PhD

Article URL: http://www.medicalnewstoday.com/articles/198689.php
I have only recently been 'diagnosed' [you can't really as it is a variety of symptoms] with CFS and am glad to hear about any breakthroughs as CFS is real. I myself had been a big sceptic and labelled people with CFS lazy, crafty, stupid and weak willed. Well, I was wrong. Its so frustrating because it seems the 'ideal' illness [as a cop out]. You look healthy and can do most things but when the going gets tough [shopping, cleaning, carrying stuff and working yes working] you become so amazingly tired that it feels as if you have run a marathon the day before. All muscles hurt, its almost impossible to move, as if there is zero energy in the body. Stress gives you the mother of all headaches and makes you fall asleep and if working full time you get ill with headaches and flu symptoms about every 4 weeks. I had it for years but thought that I was just not as cool as other people, this made me suffer at work so much that I started to fear work [on a phobia threat here on FTMB, I thought I was fearing work and saw a shrink]. Rubbish. I have never feared work, it was the fear of my tiredness [which is unlike any normal form of tiredness] at work. I was always ill, always the flu [hence the name 'yuppie flu'] and started to fear to get ill again and again. I am so glad it has a name now. Looking for part time work now and actually looking forward to it!
That shows how important it is to get evidence for CFS, so people can actually get some real help with it.
CFS looks like no fun whatsoever; suffers have my sympathy.

On the bright side, my Uni friend managed to persuade her LEA to subsidise her use of taxis at those times when she had to be at lectures but CFS meant the 20min walk was out of the question. As the taxi was headed down the hill from college - door to door - to department, I used to hitch a ride for free and manage an extra 15mins sleeping or slurping tea. Oh, happy days...
Yeah, there are some perks [that's why I call it an 'ideal' illness], when we moved our mother in law, I didn't need to carry as much as the others etc.
Its only a pain [literally] when it comes to the good things in life that can't be enjoyed properly. I used to party all night and now I get actually tired and have to ask to go home earlier, which makes me look like a spoil sport and I am so not. :(
I also work as a photographer and often had to stop because even holding the camera was tiring me and gave me extreme fatigue. So I missed really good shots.
However there are worst things in life and all I have to do is adapt. With that I feel quite ok actually. My thoughts are with others that have it worse.
I've had it 20 odd years and have the same attitude as you Dingo. Sometimes I despair at the sort of ME sufferers I see in the media (or even meet), there does seem to be a preponderance of fluffy-headed women who think crystals can give them energy. Maybe they're just the ones who stick out. I'm like you, I see it as an annoyance, it stops me doing things, but when it comes down to it there are worse diseases to have (some of which you might have been tested for, like MS or motor neurone) and I see no reason not to use it to my advantage at any opportunity. ;)
Brain and body training treats ME, UK study says

Cognitive Behavioural and Graded Exercise therapies most successful for ME

Related Stories

* More doubt over viral link to ME
* ME 'virus link' found in children
* Chocolate 'aids fatigue syndrome'

Chronic Fatigue Syndrome, also known as ME, should be treated with a form of behavioural therapy or exercise, say British scientists.

Writing in The Lancet, they argue that the approach preferred by some charities, managing energy levels, is less successful.

Action for ME disputed the claims, which it said were exaggerated.

A quarter of a million people in the UK have the condition, yet its cause remains unknown.

Symptoms include severe tiredness, poor concentration and memory, muscle and joint pain and disturbed sleep.

This study looked at which treatments were the most successful. It compared CBT (cognitive behavioural therapy - changing how people think and act), graded exercise therapy - gradually increasing the amount of exercise, and adaptive pacing therapy - planning activity to avoid fatigue.

All of the 641 people who took part in the study had chronic fatigue syndrome, but were not bed-bound.

The authors say cognitive behavioural and graded exercise therapies were the most successful, both at reducing fatigue and increasing physical function.
Continue reading the main story
“Start Quote

This study matters, it matters a lot.”

End Quote Professor Willie Hamilton, Peninsula College of Medicine and Dentistry

With cognitive behavioural therapy, 30% of patients returned to normal levels of fatigue and physical function.

They say that adaptive pacing therapy is little better than basic medical advice.

Professor Michael Sharpe, co-author of the study from the University of Edinburgh, said: "One of the difficulties in the field is ambiguity, what is the cause and most importantly, what is the treatment?

"The evidence up to now has remained controversial. The helpful thing about this trial is that it actually gives pretty clear cut evidence about effectiveness and safety."

But the charity Action for ME said the conclusions were exaggerated and questioned the safety of graded exercise therapy.

Its CEO, Sir Peter Spencer, said: "The findings contradict the considerable evidence of our own surveys.

"Of the 2,763 people with ME who took part in our 2008 survey, 82% found pacing helpful, compared with 50% for cognitive behavioural therapy and 45% for graded exercise therapy.

"Worryingly, 34% reported that graded exercise therapy made them worse."

The authors suggest that poor advice, such as suggestions to just go to the gym, could be responsible for bad experiences with the exercise therapy.

They said that the amount of exercise needed to be tailored to each person.

The Association of Young People with ME welcomed the findings.

It said it hoped that fears about graded exercise and CBT were laid to rest, and that the study needed to be repeated in children.

Professor Willie Hamilton, GP and professor of primary care diagnostics at Peninsula College of Medicine and Dentistry, said: "This study matters, it matters a lot.

"Up until now we have known only that CBT and graded exercise therapy work for some people. We didn't know if pacing worked. This caused a real dilemma, especially for those in primary care. We didn't know whether to recommend pacing, or to refer for CBT or GET.

"Worse still, not all GPs have access to CBT or GET, so ended up suggesting pacing almost by default. This study should solve that dilemma."

NICE (the National Institute for Health and Clinical Excellence) said the findings were in line with current recommendations.

Dr Fergus Macbeth, director of the centre for clinical practice at NICE, said: "We will now analyse the results of this important trial in more detail before making a final decision on whether there is a clinical need to update our guideline."
Another study fails to find XMRV in chronic fatigue patients
http://blog.the-scientist.com/2011/05/0 ... tshell-46/

The latest in a string of studies searching for a mouse virus in patients suffering from chronic fatigue syndrome has failed to turn up evidence of the pathogen, XMRV. The study, which was published online last week in the Journal of Virology, couldn’t detect XMRV in 100 people with chronic fatigue syndrome, including 14 of the patients who tested positive in the 2009 Science study that originally posited a link between the virus and the syndrome.

University of Utah in Salt Lake City virologist Ila Singh, who led the new study, suggests (as have others) that the XMRV previously found in chronic fatigue patients was a result of contamination in the lab. But Judy Mikovits, senior author of that 2009 Science paper and virologist at the Whittemore Peterson Institute for Neuro-Immune Disease, is standing by her findings. “We have complete confidence in every bit of the results in the Science paper,” she told ScienceInsider.
Chronic fatigue syndrome researchers face death threats from militants
Scientists are subjected to a campaign of abuse and violence
Robin McKie The Observer, Sunday 21 August 2011

The full extent of the campaign of intimidation, attacks and death threats made against scientists by activists who claim researchers are suppressing the real cause of chronic fatigue syndrome is revealed today by the Observer. According to the police, the militants are now considered to be as dangerous and uncompromising as animal rights extremists.

One researcher told the Observer that a woman protester who had turned up at one of his lectures was found to be carrying a knife. Another scientist had to abandon a collaboration with American doctors after being told she risked being shot, while another was punched in the street. All said they had received death threats and vitriolic abuse.

In addition, activists – who attack scientists who suggest the syndrome has any kind of psychological association – have bombarded researchers with freedom of information requests, made rounds of complaints to university ethical committees about scientists' behaviour, and sent letters falsely alleging that individual scientists are in the pay of drug and insurance companies.

"I published a study which these extremists did not like and was subjected to a staggering volley of horrible abuse," said Professor Myra McClure, head of infectious diseases at Imperial College London. "One man wrote he was having pleasure imagining that he was watching me drown. He sent that every day for months."

Chronic fatigue syndrome – also known as myalgic encephalomyelitis (ME) – is common and debilitating. A recent BMJ (formerly the British Medical Journal) feature suggested that as many as one in 250 people in the UK suffers from it. Patients are sometimes unable to move and become bedridden, occasionally having to be fed through a tube. For more than 20 years, scientists have struggled to find the cause, with some pointing to physiological reasons, in particular viral infections, while others have argued that psychological problems are involved.

It is the latter group that has become the subject of extremists' attacks. The antagonists hate any suggestion of a psychological component and insist it is due to external causes, in particular viruses. In the case of McClure, her "crime" was to publish a paper indicating that early studies linking the syndrome to the virus XMRV were wrong and the result of laboratory contamination. So furious was the reaction that she had to withdraw from a US collaboration because she was warned she might be shot.

A similar hate campaign was triggered by a study published in the Lancet earlier this year. It suggested that a psychological technique known as cognitive behavioural therapy could help some sufferers. This produced furious attacks on the scientists involved, including Michael Sharpe, professor of psychological medicine at Oxford University. He had already been stalked by one woman who was subsequently found to be carrying a knife at one of his lectures.

"The tragedy is that this tiny group of activists are driving young scientists from working in the field," said Sharpe. "In the end, these campaigns are only going to harm patients."

This point was backed by Fiona Fox, director of the Science Media Centre. "Using threats and intimidation to prevent scientists pursuing specific avenues of research or speaking out is damaging not just science. It harms society," she said.

None of the scientists contacted by the Observer believed chronic fatigue syndrome was purely psychological. All thought external causes were involved. "There is an element that is heritable," said Dr Esther Crawley, a consultant paediatrician at Bristol University. "We also know that in children it is often triggered by a virus infection, while in adults it is associated with social deprivation. Stress and adversity is involved. To call this yuppie flu – as people have done – is a complete misnomer."

Crawley has spent years trying to unravel the causes, but her refusal to accept that the condition is a result only of organic external factors has resulted in her being deluged with hate mail from extremists. "You evil bastards … time is running out for you so you have [sic] better start denouncing your flawed inhumane therapy and pray to God for forgiveness," said one.

"To those who are responsible for preventing us sick ME sufferers from getting the help we need ... you will all pay," stated another. "It is depressing to receive emails like that, but I make sure that it does not get me down," said Crawley. "I do check packages that are sent to my office, however."

Many of the extremists' claims are bizarre, said Professor Simon Wessely, of the Institute of Psychiatry at King's College London. "They say I am in league with pharmaceutical companies in order to suppress data that shows a link between viruses and the syndrome. But why on earth would drug companies do that? If they could link the condition to a virus they would be well on the way to developing lucrative treatments and vaccines. It is crazy."

Wessely has installed speed dial phones and panic buttons at the police's request and has his mail X-rayed. He gave up his research on chronic fatigue syndrome several years ago, though he still treats patients. "I have moved my research interests to studies of Gulf war syndrome and other conditions linked to war zones," he said. "That has taken me to Iraq and Afghanistan where quite frankly I feel a lot safer – and I don't mean that as a joke."

http://www.guardian.co.uk/society/2011/ ... lomyelitis
Any extremists are wrong when they start threatening people but I have to say that in the last few months I had my own fair share of very unfair treatment of my Me/CFS. I have it quite badly and have gone from a professional to someone who can't even do 3 measly hours of care work without feeling deathly fatigued. I have been fighting like a lion to get some help from the government and feel very embarrassed about it all as I know what I think about benefit scroungers. Of course after testing my abilities [can you lift your arms? Yup. Can you bend over? Yup. Can you learn new tasks? Er yessss. Can you walk up twenty stairs? Yeeeeessss! Then you can work. NO!
ME is not a bad back and to be honest if I didn't have it myself, I would be one of those sceptics [as I was before my diagnosis]. Because I look healthy and I can do things, anyone could fake this illness.Or could they?
My GP listens very carefully to people claiming to have it and she said that it is difficult to keep it up for a very long time and say the right things when you haven't experienced it.

So back to my denied claim, I obviously appealed against the decision and will go to a tribunal. I will not give up. However I am being treated like a faker and that hurts. It hurts when I see young strong boys being on the sick because they smoke dope all day and then are getting paid for it. I feel angry when alcoholics get money, just to spend it on more booze. I could cry when I see all this when I have to fight so badly whilst actually being genuinely ill. All this obviously exasperates my illness at the moment, as stress is one of the triggers.

There are enough symptoms to actually call it an illness and it is not a nice one believe me. All my social life has changed, not being able to work makes me feel useless and embarrassed, I get fearful and confused. I feel old beyond my years and have pains in my joints. Yet there are people who actually believe that it is all in the mind.

For one, those people definitively never had the illness, because if they had their opinion would change over night. I can tell that it is physical and not psychological. What a nasty, uninformed, vicious and outright dangerous claim to make when there are so many people affected.

I disagree with threatening behaviour but I agree with the anger felt by these people. Because I am angry too, very. Even if it was psychological though [lets play devil's advocate], it would be up there with severe depression and other mental disorders that are debilitating and very unpleasant and warrant care, understanding and medication, not being treated as something you can "pull yourself out off and get on with it".

However the extreme activists don't help us true sufferers either but the argument that their behaviour stops scientists from researching ME is a cheap cop out. This is a real illness and NEEDS to be researched. Ways of getting evidence MUST be found and drugs need to be developed if at all possible. If they really cared they'd get on with it, arrest the troublemakers and promise all sufferers that they are trying their best.

Dingo667: I'm very sorry to hear of the trouble you are having and hope it is sorted out soon. Your story is another reminder that we should not believe all of the propaganda about "benefit scroungers" and the like.

What I don't quite understand about the ME/CFS activists is why they are *so* hostile to any suggestion of a psychological cause. Mental illness can be every bit as debilitating as physical illness.
I'm very sorry to hear too.

Don't want to go into anything personal, but i recently won my appeal against the assessment that i 'failed' last year, after 7 1/2 months and have to say, could probably write a dissertation on how crap and sometimes just rotten the whole system is. :(

Try not to take it personally Dingo, do your best not to let it bust your bean, because it really will, and do get onto your MP if things get 'stuck', they can be very helpful indeed in this kind of situation.
BlackRiverFalls said:
I'm very sorry to hear too.

Don't want to go into anything personal, but i recently won my appeal against the assessment that i 'failed' last year, after 7 1/2 months and have to say, could probably write a dissertation on how crap and sometimes just rotten the whole system is. :(

Try not to take it personally Dingo, do your best not to let it bust your bean, because it really will, and do get onto your MP if things get 'stuck', they can be very helpful indeed in this kind of situation.

Dingo I hope things work out.

Cause them as much hassle as possible, MPs, councilors local media.
Oh, thanks everyone. Friendly words always help :D

BlackRF, I think there is hope, if you won an appeal. I have since heard that it seems to be the norm to let people down first and then see if they appeal. But something tells me that others do not have to go through these things. Especially those people who have never worked. So easy targets are chosen first.
We knew someone who had never worked and always maintained he doesn't want to because he wants to play music [wouldn't we all]. He drinks like a hole and through drink [and ensuing aggressiveness and hence self inflicted] got once beaten so badly that he needed a skull plate. he then had one epileptic fit [had none since; that's 5 years ago] and is since then on the sick with enough money to go to the pub every single day, gets his rent paid and can use all his money [all £160 p.w] just for himself as he seems fit [booze]. I'm not even asking for disability but Income related something or another, which is far less in my case.

As to the question why those activists have to be so violent about it...I really have no idea, all they do is make it worse. If I was into conspiracies ;) I'd say maybe they are put there by the same people who they are attacking to make others think that 'our lot' is a bunch of lunatics. :madeyes:
But seriously, maybe those particular one's are actually mad, it's a strange cause to show behaviour like that for.

Whatever the reason though I stand by what I said: using those few activists as an excuse not to do any more research is just an excuse.
A whole lot more of those kind of activists have yet to stop animal research. There is obviously not enough money to be made for pharmaceutical companies with ME. I mean an illness that can't be properly diagnosed, has varying symptoms and nobody has any idea why, is not a good basis to pump money into.
More disagreements.

Chronic fatigue syndrome: Brain training is most cost-effective treatment

The cause of Chronic fatigue syndrome is unknown.

Related Stories

Brain, body training 'treats ME'
What causes Chronic Fatigue Syndrome?
Immune system defect may cause ME

Exercise and behavioural therapies are the most cost-effective and successful ways to treat Chronic fatigue syndrome, also known as ME, an analysis shows.

A study of 640 patients showed these treatments had the potential to save the economy millions of pounds if they were widely adopted.

The findings were published in the journal PLoS ONE.

However, another treatment favoured by patients' groups was shown to offer little value.

Nobody knows what causes the condition, yet a quarter of a million people in the UK are thought to have it.

The symptoms include severe tiredness, poor concentration and memory as well as muscle and joint pain and disturbed sleep.

Continue reading the main story

Start Quote

There is now a strong case for the NHS to invest in providing these therapies”

Prof Paul McCrone
King's College London
An earlier version of this research, published last year, showed that cognitive behavioural therapy (changing how people think about their symptoms) and graded exercise therapy (gradually increasing the amount of exercise) were the most effective treatments.

However, the study provoked anger from many patients' groups which argued that pacing therapies (learning to live within limits) were both better and safer for patients.

Using data from the same set of patients, researchers compared improvements in levels of fatigue and activity with the cost to the NHS of providing the treatments.

It concluded that only cognitive behavioural therapy and graded exercise therapy could be considered cost-effective.

When the wider cost to society was considered, such as lost work or the cost of carers, those two therapies provided an overall saving.

Prof Paul McCrone, a health economist from King's College London, said: "There is now a strong case for the NHS to invest in providing these therapies."

Prof Michael Sharpe, from Oxford University, said: "This new evidence should encourage health service commissioners to provide these treatments to all those patients who need them."

Sir Peter Spencer, the chief executive of the charity Action for ME, said: "Patient choice should not be reduced as a result of this costing exercise.

"Action for ME will continue to recommend pacing as an effective treatment. We cannot ignore the number of patients who have been helped by it and the number of clinicians who find that it works for their patients."
As someone who has ME [CFS is a misnomer], I cann say hand of heart that CBT and/or graduated exercise do not work [for me]. It is very dangerous to label all ME sufferers the same and say that these therapies will work. What I fear is that by saying this, people for whom these do not work will be thought of as 'not doing it right' or 'refuse to get better' and so on, when in fact the illness is PHYSICAL.

Arthritis sufferers got just as angry when recently someone suggested that CBT will help them with their pain. Total and utter rubbish.
If anyone could be in my body for a day, if they could feel that there is no energy to be pulled out of thin air [which they suggest]. If they could feel how strange and unpleasant the fatigue is compared to tiredness after a days work for example. If they could feel how I can almost feel my individual cells running on emergency energy, then they wouldn't sprout such dangerous rubbish.

It makes me very angry as they are basically saying that if you think differently then you'll get better. Whoever said that is a bas**rd.
I went to CBT to try out how brilliant it is after my own GP said that it will rid me of my muscle pain. I nearly hit her.
The first thing the CBT woman said to me is that she can do nothing about the pain. Then we went through 'fears' and 'worries' that I have but there weren't any.
The reason is that they believe that all symptoms come from adrenalin rushes when you are worried but here comes the clincher, I get exhausted, fatigued and pain even if I am the calmest I can be.

Then the graded exercise, tried that as well and can also say it doesn't work if you have chronic ME. It may help when you have a bout of CFS after an illness but if you have it for years like me, it is as useless as trying to stretch an already stretched rubber band even more. Even if you do it bit by bit, the result will always result in it snapping. I have days where I can do a little more than the day before but then the day after I can't even get close. So how are you supposed to gradually do more?

This is thought out by people who neither have the illness, nor do they believe that it is physical. If you compare it to depression or anxiety, there are also two kinds. The kind that everyone goes through after a trauma and the one that is physical and will never go completely away.

Long term ME can NOT be cured by either CBT or graduated exercise. It is an insult to even suggest this.
What we need is a scientist to actually find physical changes, such as they have already within the mitochondria.
I am fuming. :x
At the end of the article theres a timeline of important developments in the research. It would be viewed more coherently at the link where its at the start of the article.

The scientist who put the nail in XMRV's coffin
http://www.nature.com/news/the-scientis ... in-1.11444
W. Ian Lipkin tells Nature about his efforts to validate the link between retroviruses and chronic fatigue syndrome.

Ewen Callaway
18 September 2012

A study published today1 has found no evidence to support research linking the retroviruses XMRV2 and pMLV3 to chronic fatigue syndrome (CFS). The US$2.3-million study, funded by the US National Institutes of Health (NIH), comes three years after a link between XMRV and CFS was first reported in Science2.

W. Ian Lipkin, a molecular epidemiologist at Columbia University in New York, was not involved with the initial studies, but he shepherded the effort to replicate them to completion. Three laboratories, including the two that made the original discoveries, tested blood samples from 147 patients with CFS and 146 healthy volunteers, and then reported their results to Lipkin's laboratory for analysis. The veteran scientist, who has debunked other disease links such as that between autism and vaccines, tells Nature about the study — including his efforts to keep Judy Mikovits, an XMRV researcher formerly at the Whittemore Peterson Institute for Neuro-Immune Disease (WPI) in Reno, Nevada, out of jail for taking notebooks from her former laboratory — and why he hopes that some good will come out of the study.

What’s the history of this study?
When these two papers2, 3 came out very close together, there was a lot of concern. There was a lot of optimism as well, because now there was a potentially tractable solution for CFS. Many people began trying to replicate the work. Some people were able to do so and some weren’t, but there really wasn’t any coherence to it. It became clear that it was necessary to have some sort of investigation of this disorder and find out whether or not there was any link.

What was really needed was a properly designed study in which the individuals who made these reports could use their own best efforts. I’ve come to the conclusion that the most important thing you can do is to design the study, supervise it and then get out of the way.

W. Ian Lipkin
Did everything go as planned?
Judy Mikovits, during the middle of all of this, was forced out of her job at the Whittemore Peterson Institute. [She was subsequently accused of stealing her lab notebooks and jailed.] Before she was incarcerated, I tried to negotiate some sort of agreement between her and the institute, so that this would not happen. One of the problems was that she really did need access to her laboratory notebooks so that she could answer questions from other scientists and patients, and she was not given an option to do that. She took these notebooks — and I trust that it was true — with the notion that she wanted to copy them.

Did you find any hint that XMRV is associated with CFS?
We did not find any genetic sequences [of XMRV or related viruses] in the people with CFS or the controls. As far as we know, there is no human being that is infected with XMRV.

The one wrinkle is that there were patients who were found to be XMRV-positive in serological tests by Francis Ruscetti, [an immunologist at the NIH in Frederick, Maryland,] in 9 cases and 9 controls. Some might say that this is evidence that there are people who are infected with XMRV, even if it isn’t associated with CFS. But I have concerns about that interpretation. If you consider this in the context of the work that shows that XMRV originates in the laboratory4, then I think we can probably close the door on this once and for all.

Will we ever have a full explanation of what happened?
I think the explanation is that there was contamination. I don’t see any reason to invoke anything beyond that.

Do you think there are lessons to be learned from this saga?
Related stories
XMRV paper withdrawn
Chronic fatigue syndrome: life after XMRV
Virology: Fighting for a cause
More related stories
My expectation is that this will be a cautionary note. We will see far more of these sorts of observations coming out over the next few years, as people use ever more sensitive methods for discovering infectious agents.

Why was this study necessary, given the failed replication efforts?
The only thing that matters is that the people who originally reported the finding had an opportunity to test it with a large, appropriately powered group. This was the definitive study and it was crucial that it be done properly.

Had we done this when Andrew Wakefield [the former medical researcher who proposed that autism was caused by vaccines] came out with the initial report5 about the measles, mumps and rubella (MMR) vaccine and autism, and had something this definitive, there are many more children who would have been vaccinated against measles during the ten years it took us to finally complete the MMR–autism work6. So I think it’s crucial that we don’t do things in a half-baked fashion, so we can test hypotheses and move on to new ones.

Do you think the CFS community and the scientists involved will accept these results?
I certainly hope so. I feel very badly for Mikovits, [her co-author] Ruscetti and Harvey Alter [a hematologist at the NIH Clinical Center in Bethesda, Maryland, who led one of the CFS studies]. Mikovits in particular — she has lost everything. She can be wrong but she’s not a criminal. She has been honest in a respectful, forceful way and said that we have to conclude that we were wrong. You can imagine how difficult it must be, and I think she should be applauded. Lots of people wouldn’t have the balls to do that. She has come across as a scientist who really believes in the importance of truth.

You have disproved the autism–MMR connection and other controversial disease links. Have you dealt with anything quite like the XMRV case?
I’ve never seen anything like this. To talk to somebody who is running from the law or has been incarcerated, or to try to adjudicate some sort of agreement so she doesn’t go to jail, it’s a little beyond the pale. I hope I never do anything like this again. Whatever it is we do, we’re castigated. My mailbox has been full today with complaints from people in the community saying: “You didn’t do this, you didn’t do that.”

What do you say to the CFS community to stop them from thinking that scientists will turn their back on CFS when this study is complete?
I have to agree with them that they’ve not received the attention that other groups have had. They’ve tried to take a page from people who work in autism, who looked at HIV/AIDS, breast cancer and so on, and the CFS community has not been as vocal and effective as they might be.

What I say to them is this: the fact that we did this study means we did take you seriously. We didn’t do a shoddy piece of work. We’re ready to invest in the next phase of research. There are all these samples that will be available. There will be funding opportunities. It’s evidence, I think, of an unprecedented opportunity for people to do basic and applied research into the causes and ways in which one can prevent or mitigate the tragedy that is CFS. People with CFS should actually feel heartened that there’s more energy and effort going into this. It wouldn’t make any sense for us to dwell on something that doesn’t work.

Nature doi:10.1038/nature.2012.11444


Alter, H. J. et al. mBIO 3, e00266-12 (2012).
Show context
Lombardi, V. C. et al. Science 326, 585–589 (2009).
Show context
Lo, S.-C. et al. Proc. Natl Acad. Sci. USA 107, 15874–15879 (2010).
Show context
Paprotka, T. et al. Science 333, 97–101 (2011).
Show context
Wakefield, A. J. et al. The Lancet 351, 637–641 (1998).
Show context
Hornig, M. et al. PLoS ONE, DOI: 10.1371/journal.pone.0003140 (2008).
Show context

Related stories and links

From nature.com

XMRV paper withdrawn
22 December 2011
Chronic fatigue syndrome: life after XMRV
03 June 2011
Virology: Fighting for a cause
14 March 2011
Chronic fatigue findings were held back
02 July 2010
Virus linked to chronic fatigue syndrome
08 October 2009

Dashed hopes:
Virus once linked to chronic fatigue syndrome fails its final test

March 2006

Scientists discover the first traces of a new retrovirus in tissue from prostate cancer patients. They name it xenotropic murine leukemia virus related virus, or XMRV for short.

Identification of a Novel Gammaretrovirus in Prostate Tumors of Patients Homozygous for R462Q RNASEL Variant

Virus linked to chronic fatigue syndrome

8 October 2009

Scientists link a little known retrovirus called XMRV to chronic fatigue syndrome (CFS). They are led by Judy Mikovits, then at the Whittemore Peterson Institute for Neuro-Immune Disorders in Reno, Nevada, and Frank Ruscetti at the National Cancer Institute in Frederick Maryland. CFS patients herald the findings and hope they could lead to a treatment.

Virus linked to chronic fatigue syndrome


First challenge to XMRV

January 2010

Researchers in Germany fail to find any link between XMRV and CFS, in what will be the first of many studies questioning the original report.

Chronic confusion about chronic fatigue

February 2010

Dutch and UK teams find no evidence for XMRV.

Yet another study refutes virus link to chronic fatigue syndrome

US government study questions XMRV link, while rumours swirl

July 2010

Scientists at the US Centers for Disease Control and Prevention in Atlanta, Georgia fail to find any link between XRMV and CFS. Meanwhile, rumours swirl over a possible confirmation by scientists at two other government agencies, NIH and FDA that is being delayed because of discrepancies between the government labs.

Chronic fatigue findings were held back

Photo: Ila R. Singh, M.D., Ph.D., the University of Utah School of Medicine

Delayed CFS paper published

August 2010

A second paper identifying retroviral sequences in patients with CFS is published in PNAS http://www.pnas.org/content/107/36/15874, after a three month delay. Harvey Alter, of NIH, and his team discovered sequences of viruses similar, but not identical, to XMRV in frozen blood samples of CFS patients. Judy Mikovits celebrates the findings with a video to supporters on YouTube.

Chronic confusion about chronic fatigue

Threat to blood supply

Early December 2010

The American Red Cross bans blood donations from CFS patients, over fears of transmitting XMRV. An advisory panel recommends that the FDA follow suit.

FDA advised to turn away blood donors with chronic fatigue syndrome

Image: National Institutes of Health

21 December 2010

Four papers make the strongest case yet that XMRV is not linked to CFS, and hint that the original findings were due to laboratory contamination. In an interview with Nature, Judy Mikovits later called the papers "Christmas garbage."

New challenge to link between virus and chronic fatigue syndrome

Image: o5com via Flickr

March 2011

Scientists at NIH present research showing that XMRV emerged from two different mouse viruses in the laboratory during the 1990s. The implication, one author told Nature, is that this virus, born in a laboratory, has probably been infecting laboratory samples for more than a decade, but not people. Meanwhile, a Nature profile of Judy Mikovits highlights growing tensions between Mikovits and her former collaborators on the initial report.

Virology: Fighting for a cause

The beginning of the end?

May 2011

A study replicating the methods of the original Science report fails to find any trace of a link between XMRV and CFS, nor any evidence that the virus infects people.

More questions over link between XMRV and chronic fatigue syndrome

Journal calls for retraction

31 May 2011

In a letter leaked to the Wall Street Journal, Science asks Judy Mikovits and her team to retract their paper, who declines. The journal issues an expression of concern over the paper. "It's a bust," Jonathan Stoye, a retrovirologist at the National Institute for Medical Research in London, told Nature.

Chronic fatigue syndrome: life after XMRV

CFS study partially retracted

22 September 2011

Another negative study involving 9 laboratories prompts Science to issue a partial retraction of the XMRV paper.

Chronic fatigue study partially retracted

Mikovits fired

29 September 2011

Judy Mikovits is fired from her job as research director at the Whittemore Peterson Institute for Neuro-Immune Disease in Reno, Nevada. The Institute claims that Mikovits refused to share reagents with a former colleague.

Integrity issue follows fired researcher

Image: David Calvert/AP

Mikovits arrested over missing lab notebooks

November 2011

Mikovits is arrested in California and later charged in Nevada with stealing laboratory notebooks, computers and memory drives. WPI files a separate civil lawsuit seeking the return of these materials.

Embattled scientist in theft probe.

Studies retracted

Dec 2011

Science takes the unusual step of retracting the original XMRV study, without the full agreement of the authors.


Days later, PNAS pulls the study led by Alter that linked viruses related to XMRV with CFS.

http://blogs.nature.com/news/2011/12/an ... acted.html.

Criminal charges dropped

14 June 2012

A Nevada judge has dropped criminal charges against Judy Mikovits.

Criminal case against chronic fatigue syndrome researcher dropped
Controversial CBT trials again.

Chronic Fatigue Treatments Lead To Recovery In Trial
01 Feb 2013

In a large UK trial, chronic fatigue syndrome (CFS) patients who received cognitive behaviour therapy (CBT) or graded exercise therapy (GET), combined with specialist medical care, were three times more likely to recover than those who received other treatments.

Researchers from King's College London, Queen Mary University of London, the University of Oxford and the Medical Research Council , write about the results of the PACE trial in a paper published in the January online first view issue of Psychological Medicine.

Co-author Trudie Chalder, a professor in the Department of Psychological Medicine at King's College London's Institute of Psychiatry, says in a statement:

"The fact that people can recover from chronic fatigue syndrome is excellent news."

"Healthcare professionals can now be more confident in sharing this possibility with patients, many of whom are understandably concerned about their future," she adds.
Chronic Fatigue Syndrome (CFS)

Chronic fatigue syndrome (CFS), also referred to as ME or myalgic encephalomyelitis, affects some 250,000 people in the UK. It is a long-term, debilitating condition that causes profound physical and mental fatigue (often made worse by exertion), accompanied by muscle and joint pain, disturbed sleep, and problems with concentration and memory.

The affected person feels exhausted and not able to carry on with normal everyday life. It doesn't go away with sleep or rest, but for most people, the symptoms gradually go away over time.

There is currently no cure for CFS/ME, although some treatments can ease symptoms. Trials like PACE are evaluating which treatments work best.

The causes of CFS/ME are unknown. In 2009 a study suggested the XMRV mouse virus plays a role in the development of CFS, but two reports published in June 2011 refuted the claim, saying the more likely explanation for the finding was lab contamination.

There is some controversy surrounding CFS/ME, as reflected in the two names. CFS is the term mostly used by the medical profession, because the main symptom is usually chronic fatigue, and many argue there is not enough evidence that the condition is accompanied by brain and spinal cord inflammation, as the name ME suggests.

ME is the term most patients prefer because they see fatigue as too general a way to describe their symptoms; it insufficiently describes the severity and types of fatigue, and does not convey the fact fatigue, despite being the most common, is only one of several symptoms.

For this reason, there are several ways to diagnose CFS/ME, each with its own set of criteria.
The PACE Trial

The PACE trial started in 2005 and compared four of the main treatments available for CFS.

640 participants, recruited from six secondary care CFS clinics in England and Scotland, were randomly allocated to one of four treatment groups, with a final follow-up 52 weeks later.

The researchers used a range of criteria to define CFS/ME. These included the Oxford Criteria for CFS (all patients met these) and the London Criteria for ME (51% of patients met these).

The four treatment groups were:
Specialist medical care (SMC) alone. In SMC, specialist doctors give the patient an explanation of CFS, and general advice about how to manage it. They also prescribe medicines for symptoms such as insomnia and pain, or they advise the patient's GP (general practitioner) as to which medication is most appropriate. In the SMC only group, patients are also encouraged to use the self-help methods that make most sense to them.

Cognitive behavioural therapy (CBT) with SMC. In CBT, a trained clinical psychologist or nurse helps the patient understand how the way they think affects their symptoms and how they cope with them, and gradually encourages them to increase activity.

Graded exercise therapy (GET) with SMC. In GET, a trained physiotherapist helps the patient adopt a gradually increasing tailored exercise programme that is designed around their individual symptoms and current level of activity and fitness.

Adaptive pacing therapy (APT) with SMC. In APT, a trained occupational therapist helps the patient to match their activity level to the amount of energy they have. The idea is to help them adapt to the illness rather than assuming they can gradually do more.
Many patients treated via the NHS in the UK are offered CBT and GET for treating conditions ranging from rheumatoid arthritis to heart disease, diabetes, depression and chronic pain.

Previously published results from PACE showed that many patients improved with CBT and GET but did not answer the question about how many patients recovered.

Funds from the Medical Research Council, Department of Health, Chief Scientist Office, Scotland, and Department for Work and Pensions paid for the PACE trial, which is thought to be the largest ever randomized controlled trial of treatments for CFS.
The Latest Study

The researchers examined the evidence for recovery after the one year follow-up.

Previously published results from PACE showed that both CBT and GET with SMC led to bigger reductions in symptoms and disability than either APT with SMC, or SMC alone.

In this latest analysis, the researchers went a step further and looked at how many patients had recovered.

They classed recovery as no longer meeting several diagnostic criteria for CFS, including no longer suffering from significant fatigue or physical disability. These were the same criteria that were used to select the patients for the trial in the first place.

Patients also had to rate their overall health as being "much" or "very much" better.

The results showed that patients who received CBT or GET in addition to SMC, were three times more likely to meet the criteria for recovery than patients who only received SMC on its own, or APT with SMC.

The findings show that overall, 22% of patients receiving CBT or GET with SMC recovered, compared to 8% who received APT with SMC, and 7% who received only SMC.

Even when measured against different criteria for CFS, the patterns were similar, including when the diagnostic criteria were confined to myalgic encephalomyelitis (ME), which some people consider to be different to CFS.

Co-principal investigator of PACE, Peter White, is Professor of Psychological Medicine at Barts and the London School of Medicine and Dentistry, part of Queen Mary, and lead author of the latest paper. He says:

"This is good news and shows that recovery from this debilitating condition is possible for some patients."

"We now need to go further to understand why only a relatively small proportion of patients recover, which shows how much this condition varies between individuals; one treatment is unlikely to work for everyone."
Questioning Use of Term "Recovery"

White touched on the issue of how to define "recovery" and accepts some people reading about this study may question their use of the term. He says this was a key issue in the design of the study, and they chose to focus on "recovery from the current episode of the illness", so they "used several measures of both symptoms and disability to give ... the most complete picture possible."

However, he concedes that "further analysis is needed to see if recovery is sustained in the long-term."

Co-author Michael Sharpe, a professor at the University of Oxford and the other co-principal investigator of the PACE trial, says:

"The rehabilitative treatments of CBT and GET for CFS have been controversial. This analysis of the PACE trial data shows that not only do they achieve improvements in the majority, but that they can also lead to recovery in a substantial minority."

Written by Catharine Paddock PhD
Copyright: Medical News Today

"Recovery from Chronic Fatigue Syndrome after treatments given in the PACE trial"; P. D. White, K. Goldsmith, A. L. Johnson, T. Chalder, M. Sharpe, and PACE Trial Management Group; Psychological Medicine, Published online January 2013; DOI:10.1017/S0033291713000020; Link to Abstract.
Additional sources: University of Oxford, and Kings College London.
Chronic Fatigue In Adults May Be An Increased Risk For Survivors Of Childhood Leukemia And Lymphoma

21 Mar 2013

Chronic fatigue, a persistent lack of energy that does not improve with rest, is at least three times more prevalent among adult survivors of acute lymphoblastic leukemia and lymphoma experienced during childhood or adolescence than in the general adult population, according to an article in Journal of Adolescent and Young Adult Oncology (JAYAO), a multidisciplinary peer-reviewed publication from Mary Ann Liebert, Inc., publishers. JAYAO is the Official Journal of the Society for Adolescent and Young Adult Oncology. The article is available online on the i>JAYAO website.*

Chronic fatigue can negatively affect a person's health-related quality of life and ability to work and carry out normal daily functions. Authors Hanne Hamre, MD and colleagues Oslo University Hospital and University of Oslo Norway used a questionnaire, clinical examination, and blood samples to compare adult survivors of childhood leukemia and lymphoma to a control group from the general population. The prevalence of chronic fatigue was 27% among the cancer survivors compared to 8% among controls.

In the article "High Prevalence of Chronic Fatigue in Adult Long-Term Survivors of Acute Lymphoblastic Leukemia and Lymphoma during Childhood and Adolescence," ** the authors describe factors predictive of chronic fatigue among the adult cancer survivors and present blood analysis findings suggestive of a persistent low-grade inflammatory response that may contribute to the chronic fatigue.

"Chronic fatigue in cancer survivors is often an under-appreciated complication of treatment," says Editor-in-Chief Leonard S. Sender, MD, of the University of California, Irvine and CHOC Children's Hospital. "There is a general belief that after successful treatment a survivor should be able to bounce back without lasting effects. Hamre and colleagues demonstrate that fatigue is a larger problem than generally appreciated. Their findings put a spotlight on this key aspect of cancer survivorship and serve to encourage the medical community to communicate with cancer survivor patients about possible chronic fatigue."

* http://www.liebertpub.com/JAYAO
** http://online.liebertpub.com/doi/full/1 ... .2012.0015
Mary Ann Liebert, Inc./Genetic Engineering News
Patients with severe ME receive 'inadequate care'

"At its most severe, CFS/ME can lead to individuals becoming housebound, a wheelchair user, or bedbound and dependent on carers for all basic activities of daily living," yet this group of patients in the UK has poor access to specialist care that may help, according to research published in BMJ Open.

Chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) affects over a million Americans, according to the Centers for Disease Control and Prevention (CDC), and affects four times more women than men, most often people in their 40s and 50s.

The CDC's CFS toolkit for health care providers says the syndrome, which has no cure, needs care that can be as complex as the condition itself.

The body gives this recommendation in the report: "The management of CFS may require working with a team of doctors and other health care practitioners, which might include mental health professionals, rehabilitation specialists, and physical or exercise therapists, to create an individualized treatment program."

Similar recommendations are laid down in the UK, says the new research: "Management of severe CFS/ME is difficult and complex and health care professionals should recognize that specialist expertise is needed when planning and providing care for people with severe CFS/ME."

Lack of face-to-face care
In spite of this health care framework, the study, led by a researcher who has had the condition herself, found that a "substantial proportion" of patients with severe CFS lacked access to "face-to-face, local specialist care, even when they live in an area with a CFS/ME service."

Clare McDermott, doctoral research fellow at the University of Southampton in the UK, had CFS when she was younger. Her research took the form of a questionnaire to all of the relevant health care providers, and the results show that a third provided no service at all for severely affected patients. An additional 12% offered occasional or minimal support. Dr. McDermott says:

"People with ME should be able to seek the advice of a specialist service close to their homes. We were surprised by the lack of services and access to services that our survey revealed. Even if [there is a local] service, some housebound patients will never get to use it. Many very ill patients are going without." ...

The mysterious disease known as chronic fatigue syndrome (CFS) has long defied classification, as the millions of people who suffer from it show a wide variety of symptoms. Now a panel commissioned by the US Department of Health and Human Services (HHS) has produced what is sure to be an influential report on how the disease should be diagnosed. This new definition comes with a new moniker: systemic exertion intolerance disease (SEID).

The report, released by the US Institute of Medicine (IOM) on 10 February, says that the new name better reflects the key symptom of the disease — extreme exhaustion after any exertion. It argues that other symptoms, such as poor sleep and cognitive impairment, are secondary. But some experts are already challenging the name and revised diagnostic criteria.

Leonard Jason, a psychologist at DePaul University in Chicago, expects that patient advocacy groups will find fault with the new name, feeling that they were not adequately consulted. “As a community psychiatrist who values citizen participation in critical decisions, I think this was a strategic mistake,” he says. ...

Distinct changes in the immune systems of patients with ME or chronic fatigue syndrome have been found, say scientists.

Increased levels of immune molecules called cytokines were found in people during the early stages of the disease, a Columbia University study reported. It said the findings could help improve diagnosis and treatments.

UK experts said further refined research was now needed to confirm the results. ...

The US research team, who published their findings in the journal Science Advances, tested blood samples from nearly 300 ME patients and around 350 healthy people. ...

"I was completely revitalised," says Karen. "Suddenly, I could be sociable again. I would go to work, go home, eat dinner and feel restless."

Karen (not her real name) experienced this relief from chronic fatigue syndrome while taking a drug that is usually used to treat the blood cancer lymphoma and rheumatoid arthritis (see "Karen's experience", below).

She was one of 18 people with CFS who reported improvements after taking rituximab as part of a small trial in Bergen, Norway. The results could lead to new treatments for the condition, which can leave people exhausted and housebound.

Finding a cause for CFS has been difficult. Four years ago, claims that a mouse virus was to blame proved to be unfounded, and some have suggested the disease is psychosomatic.

The latest study implicates the immune system, at least in some cases. Rituximab wipes out most of the body's B-cells, which are the white blood cells that make antibodies. ...

I recently got back in contact with a girl - now woman - with whom I used to be at college. She lived a few doors down in halls from me and studied the same subject, so despite her being two academic years my junior we used to see each other reasonably often and had some 'mutual' acquaintances - in the Dickensian sense. Anyway, the point is that she began suffering from M.E. in the final months of my time at university while I was (moderately) hard at work for my finals, so I was only dimly aware that things were going badly and then we lost contact after graduation.

By pure chance we were both included on the same circular email and got in touch with each other a month or so ago. I gave her the brief rundown on what the intervening years have brought: friends, travel, business, wife, child etc.: she said that M.E. has dominated every one of the last sixteen years. A sabbatical became a drop our and she didn't graduate, jobs were taken and lost, life has continued but everything is coloured by the day to day uncertainty of whether she will be able to fulfil commitments and get on with life. Apparently, there's now a good chap who helps her get through it all, but 'normality' (in a good sense) is largely impossible.

It was the first time I really took in the enormity of this disease; psychological or not, it has eaten a chunk - perhaps one of the best chunks - of her life.

Bloody sad stuff.
Is chronic fatigue syndrome finally being taken seriously?
Once dismissed by many doctors as a psychological illness, new research suggests CFS has its roots in infection – and there is hope of successful treatmentS

Jose Montoya was a trainee doctor when his supervisor told him that if he continued specialising in treating chronic fatigue syndrome (CFS), he would end up homeless. “About 15 years ago, I started working with 10 patients who’d had their lives devastated by this illness,” says Montoya, now a professor at Stanford University and one of the world’s leading experts on the disease. “I had been able to help them, so I took my results to my academic mentor and he told me: ‘You are committing academic suicide. You’re turning your career into a mess.’”

Months later, Montoya, was travelling to a conference in Paris with his mentor when the subject came up again. “There was a homeless man lying drunk in the street, and he pointed to him and told me: ‘That’s how you’re going to end up if you keep studying chronic fatigue syndrome.’”

CFS is believed to affect around 1 million Americans and approximately 250,000 people in the UK. The effects can be devastating. “My son has CFS and is only able to get out of bed for half an hour a day,” says Mary Dimmock, a CFS activist who worked in the pharmaceutical industry for 30 years. “The disease isn’t so much about tiredness, it’s that the patients just collapse if they go beyond their available energy. These people are so sick that they may only have enough energy to brush their teeth or chew their food.”

Yet for much of the past three decades, CFS has been treated as the proverbial skeleton in the closet of the medical world. Potential researchers have been scared off by the stigma associated with the disease, and government funding has been nonexistent. “When I was a medical student in the 90s, we were instructed that CFS patients could not be seen in our clinic,” Montoya recalls. “And a letter was sent out to those patients telling them not to come.” ...