Breaking news: Cause of ME/CFS is in the blood

By Cort Johnson (@CortJohnson) tweeted at 1:18 PM - 29 Oct 2016 live from the ME/CFS conference in Florida: #IACFS/ME #ME/CFS: ME/CFS cells put in healthy serum do fine; healthy cells put in ME/CFS serum poop out - something in the blood is cause (http://twitter.com/CortJohnson/status/792196306072633345?s=17)

Study finds Cognitive Behavioral Treatment exacerbates CFS/ME symptoms

@ pubmed

J Child Adolesc Psychiatr Nurs. 2015 Oct 16. doi: 10.1111/jcap.12125. [Epub ahead of print]

The Cognitive Behavioral Treatment of Depression and Low Self-Esteem in the Context of Pediatric Chronic Fatigue Syndrome (CFS/ME): A Case Study.

Loades M1.

Author information

Abstract

PROBLEM:

Up to one in three young people with chronic fatigue syndrome (CFS/ME) also has depressive symptoms. It is not known how best to treat young people with this comorbidity.

METHOD:

This case report seeks to describe and discuss the use of a cognitive behavioral approach for depression and low self-esteem in a 16-year-old girl with CFS/ME.

FINDINGS/CONCLUSION:

Therapy was effective in remediating the young person's mood difficulties, but appeared to exacerbate their CFS/ME symptoms. Therefore, it is crucial that CFS/ME and mood treatments are designed and trialed to ensure a complementary approach. Good communication and joint working between involved professionals is also important, and ideally, treatments for mood and for CFS/ME would be provided by the same team to facilitate this.

Once again a study demonstrating physical abnormalities in ME/CFS decides to ignore their own findings

By Ruth R Miller1 , W Darlene Reid2 , Andre Mattman3 , Cristiane Yamabayashi4 , Theodore Steiner5 , Shoshana Parker6 , Jennifer Gardy7 , Patrick Tang and David M Patrick, Published online: 20 May 2015:

Conclusions

This submaximal exercise testing protocol revealed attenuated changes in oxygenated and deoxygenated hemoglobin, which may be attributable to poor exercise tolerance and rapid fatigue seen in ME/CFS compounded by decreased fitness. Because of the variable responses among participants, it does not provide a clear distinction between cases with ME/CFS and healthy controls and is therefore not a useful diagnostic marker. However, testing did reveal a disproportionate level of perceived exertion and lower force production in cases with ME/CFS, and in two cases, adverse responses to low levels of exercise. The repetitive handgrip protocol may be useful to screen individuals for adverse responses and other conditions, including mitochondrial disease. It may also be useful for stratifying ME/CFS sufferers to determine appropriate levels of exercise prescription.


There are a number of issues with this study. I'm just going to mention a few.

Obviously the first one is "This submaximal exercise testing protocol revealed attenuated changes in oxygenated and deoxygenated hemoglobin, which may be attributable to poor exercise tolerance and rapid fatigue seen in ME/CFS compounded by decreased fitness."
So you find abnormalities which you don't want to find and and then you just come up with some nonsense to say they're not important. Typical Pinocchio doctoring.

If you look at the average BMI of the healthy controls and patients then there is a massive difference.
In patients it's on average 25.1 and in healthy controls 20.8. Simply put, I'm 175 cm. If my BMI was 25.1, my weight would be 76.9 kg and if my BMI was 20.8 it would be 63.7 kg. And that's a difference of 13.2 kilo which is 17.2 percent and that's a massive difference. And you cannot use healthy controls who are very slim and compare those with patients that are not.

If you look at the following sentence, "All cases and no healthy controls fit both the Canadian case definition and the CDC Fukuda definition of ME/CFS" it actually means that healthy controls can actually have ME/CFS as defined by Fukuda or defined by CCC but not by both. Which means that the healthy controls might not be healthy controls at all and they might actually have ME/CFS.

The researchers selected 25 ME patients and 25 healthy controls but they only analysed 16 of both. In the patient group they explained why they couldn't use 6 of the 25, which means that 3 were unaccounted and in the healthy controls 5 were accounted and 4 unaccounted. And in a small group that's a large percentage which is unaccounted. That should not happen but that is something which happens a lot in denial doctoring as Frank Twisk has shown repeatedly when he analysed studies by Nijmegen etc

There is one other interesting thing I would like to mention. "The CCD study pre-screened 102 people and excluded 52:24 with another diagnosis (e.g., sleep apnea, hypothyroidism, etc.), three who did not meet the case definitions, 11 that declined to participate, and 14 eligible patients that could not be matched to a control."

So 102 patient had a diagnosis of ME/CFS and after checking with the CCC criteria, in 24 of them, which is 23.5 %, the diagnosis was wrong. Which shows once again that doctors are not very good at diagnosing ME/CFS.

So once again a study demonstrating physical abnormalities in ME/CFS decides to ignore their own findings because it doesn't fit with their own ideas about ME/CFS for which they do not have any proof and they use psychoblahblah to do as if these physical abnormalities are not important. Whereas these abnormalities are actually "pretty diagnostic of impaired oxidative phosphorylation which is presumably where the "fear " of excercise comes from. Many patients with syndromic mitochondrial diseases fear excercise because their symtoms can worsen dramatically during or following the activity." As GJ rightly wrote on Facebook.


Their conclusion should have been something like: this clearly shows physical abnormalities related to exercise pointing towards mitochondrial problems in patients with ME/CFS which might aid doctors in diagnosing this condition

IOM's new name for CFS is PENIS and Viagra is now the treatment of choice‏

BREAKING NEWS: top secret picture of todays NIHp2p meeting

P2P ME/CFS Workshop Infographic updated version

how can Karina Hansen have a somatoform disorder causing Brain damage ?

sounds like more psycho crap. Those drs need to be tried at the Hague for crimes against humanity. doing jail time with the lifers!!! where is amnesty ???

What gets me down about having severe M.E. ...

What gets me down about having severe M.E... Its not the poverty or the loneliness or the total sleep disruption -all or nothing- 0r even the loss of my previous life as a qualified dental nurse that gets me down, nor the fact I was a talented painter attnding uni for my "B.A. Hons.fine art history and practice" with a view to teaching, (but now due to loss of spatial judgement I can't even draw, and can't read books now due to cognitive dysfunction). And its not that I miss my weekly horse riding hacks or the regular long walks I loved (beach, forest, mountain) or being unable to communicate verbally,  nor my severely restricted diet (without which I am faecally incontinent,)  it is not being house and bedbound for many years now, Nor that I can't use my wheelchair any more to "walk" my own dog,  Nor the constant muscle and joint pain,  Its not even the severe cognitive dysfunction and endless headaches, it isn't the total isolation of being confined to one darkened room. IT IS the total loss of my credibility and complete lack of support directly resulting from the ubiquitous disbelief that has been deliberately generated by political machinations of rich healthy Psychiatrists blithely working outside their field for financial gain (i.e. M.E. is Neurological thus totally not their Dept) . Excuse my spelling, I have M.E. x by Sally Katch1na.

Dear Secretary Sibelius: don’t make us wait another 3 decades !

Lily Chu, MD, MSHS, Burlingame, CA:

Saturday, September 28, 2013

One Heck of an Inspiring anti-IOM Study Letter

Read this letter.  It spells out  all the issues and connects the dots.  The author has granted permission to share it.  I hope it inspires you as much as it has me. 

Dear Secretary Sibelius, Dr. Koh,  Dr. Maier, Dr. Unger, Dr. Lee, Dr. Fineberg, and Dr. Behney,

As a physician, health services researcher, and person affected by myalgic encephalomyelitis/ chronic fatigue syndrome (ME/CFS), I am writing to you today to request that you consider strongly the letter expert ME/CFS scientists and physicians sent September 23, 2013 and cancel the Department of Health and Human Services’ contract with the Institute of Medicine (IOM) to construct a clinical case definition for ME/CFS. While I am appreciative of DHHS’ continued interest in ME/CFS and recognize the important and influential role the IOM plays in the health of the nation, I believe that the money and resources spent on such a contract might not only be duplicative and better spent on other areas of ME/CFS research  but may end up being harmful to patients in the short-term, by subjecting them to inappropriate treatments, and in the long-term, by obstructing and obscuring research progress.  Patients, patient advocates, clinicians, and researchers understand these issues and thus, rather than greeting the contract with joy and enthusiasm  expected, are instead contacting you with their concerns.

Duplicative efforts will waste time, resources, and money

1) Over the decades, a number of different clinical case definitions from different countries have been proposed for ME/CFS. Expert clinicians and researchers have reviewed all of them, found many to be unsatisfactory in describing patients, and, thus, came up with two different consensus-based definitions in the last decade, the Canadian Consensus Criteria (CCC, 2003) and the Myalgic Encephalomyelitis - International Consensus Criteria (ME-ICC, 2011). The experts recognize that both the CCC and ME-ICC need further validation and refinement but agree that these definitions are adequate enough to be used NOW both for clinical and research purposes. Indeed, use of the CCC has already yielded a possible treatment, rituximab, for some patients via a successful small trial in Norway. 

2) DHHS’ own CFS Advisory Committee (CFSAC), recommended in October 2012 that “at least one stakeholders’ (Myalgic Encephalomyelitis (ME)/Chronic Fatigue Syndrome (CFS) experts, patients, advocates) workshop  in consultation with CFSAC members [be convened] to reach a consensus for a case definition useful for research, diagnosis and treatment of ME/CFS beginning with the 2003 Canadian Consensus  Definition for discussion purposes.” CFSAC did not ask for separate meetings to construct separate clinical and research definitions but for meetings to construct a case definition useful for multiple purposes. 

3) Several studies, including the Centers for Disease Control and Prevention’s Multi-Site Clinical Assessment Study, and a meeting, an Evidence-based Methodology Workshop, are already being planned by the National Institutes of Health to address the issue of case definitions. It is unclear how IOM involvement would add value to the processes already underway. Instead too many cooks may spoil the broth. 

4) Whenever patients, clinicians, researchers, advocates, or CFSAC have asked for increased funds for ME/CFS research and care, like for a Request for Applications (RFA) or for a Center of Excellence, they are told that there is no money. Yet, DHHS has money now to spend on a meeting rather than these repeated worthwhile requests? 

Separate research/ clinical case definitions are harmful to patients, obstructive/ destructive to research efforts

The last 3 decades have demonstrated that the separation of clinical care and research has resulted in suboptimal, even harmful care, of patients and little progress in our understanding of the cause(s) of and treatment for ME/CFS.

As shown recently by the US Food and Drug Administration’s excellent final report from their ME/CFS Drug Development Workshop (The Voice of the Patient), post-exertional malaise (PEM),  exacerbation of all ME/CFS symptoms (including pain, exhaustion, sore throat, insomnia, cognitive problems, etc.) with mild physical/ cognitive activity, is a key feature and disabling symptom of ME/CFS. PEM, not chronic fatigue, is why patients are bedridden, homebound, unemployed, and unable to walk a block. Clinicians from around the globe who see and take care of thousands of ME/CFS patients regularly are well aware of this symptom and thus chose it as a required symptom when constructing both the CCC and ME-ICC.  The management of PEM is also different from chronic fatigue; rather than push patients to ignore PEM and to continue to engage in mental or physical activity, which could result in not only temporary but prolonged disability, experienced clinicians tell patients to balance their activity with rest to decrease the onset or severity of PEM. 

In contrast, the emphasis on fatigue by the 1994 Fukuda and other case definitions promote the image of ME/CFS as a benign illness that can be overcome merely by a positive attitude, increased exercise, healthy diet, and enough sleep. This is reinforced by  European-based clinical trials of cognitive behavioral therapy (CBT) and graded exercise therapy (GET) that claim to substantially improve the health of or even cure ME/CFS patients. These are double-blind randomized placebo-controlled clinical trials so they must be the best and last word in care, right? This treatment information is distributed widely in usually trusted resources such as the online medical database UpToDate.  Yet a careful reading of those trials shows that frequently, subjects were selected primarily because of chronic fatigue and that a common primary outcome measure was fatigue reduction. PEM was neither required for subject selection nor measured as an outcome. (Aside from the fact that none of the trials report objective increases in activity, for example, via actigraphy.) 

Consequently, when the results of those trials are applied in practice to patients with symptoms beyond only chronic fatigue,  over  50% of thousands of patients surveyed over the last decade have stated that those treatments made them worse, not better. Patients who follow their physicians’ directions faithfully have ended up bedridden, some for days, others for years. The most recent IOM contract announcement mentions the 2007 NICE Guidelines for CFS/ME from the United Kingdom, where CBT and GET are mainstays of treatment.  The NICE guidelines were not deemed to be “nice” but rather “unfit for purpose” by the ME Association and UK patients, who asked for a  judicial review of that document. When the majority of people receiving a treatment are not getting better or even getting worse, we should ask WHY, not cling to the results of trials and doubt the words and experiences of patients. 

Because most physicians are not educated about PEM and the limits of GET/ CBT trials, patients who do not improve substantially with or defer CBT or GET are either blamed for non-compliance or viewed as depressed, malingerers, or hypochondriacs.  In 2011,  the Centers for Disease Control and Prevention reported that 85% of clinicians still viewed ME/CFS as a wholly (14%) or partially psychiatric disorder (71%).  A quarter of clinicians recommended referral to a psychologist as an initial treatment. This perception, coupled with lack of knowledge, is why hundreds of thousands of patients all over the United States cannot find a single knowledgeable and sympathetic physician to take care of them. It doesn’t matter if the patient visits Dr. “Average” at a rural private practice clinic or Dr. “Expert” at a metropolitan internationally respected university medical center. The attitude displayed and advice given is rarely different; when choosing “experts”, even those selected for their methodological/ analytic rather than clinical/ basic science skills, will DHHS or IOM consider screening for knowledge about or attitudes towards ME/CFS? Will those who view it as a primarily psychological or psychiatric illness be screened out? I understand  that the current IOM Gulf War Illness panel is currently facing criticism from Gulf War veterans and even from the chairman of the GWI advisory committee, Jim Binns, that the panel includes members who don't think GWI is a physical illness. Will any ME/CFS IOM committee have the same problem?

This history is largely why I and other patients, now joined by expert clinicians and researchers, experience a collective shudder of fear and horror when they hear DHHS plans to a) construct a clinical case definition employing professionals unfamiliar with ME/CFS, b) separate from a research case definition, c) at several separate meetings no less. ME/CFS’s past is filled with examples of ineffective and harmful ideas and treatments visited upon patients without listening to their stories nor to those of the clinicians taking care of them. Confusion and harm has already been incurred by applying research based on one definition (e.g. Oxford-based PACE trials) to patients diagnosed with another definition (Fukuda) and by employing a research case definition (Fukuda), without a solid clinical grounding, that focuses on the wrong symptom. Why make that same mistake again?

We now have two  case definitions, CCC and ME-ICC,  vetted by experienced clinicians that are already being used in both practice and research. I see no need to waste further time, money, or energy on another consensus-based meeting when those resources could be better used to validate/ refine these definitions or find biomarkers, diagnostic tests, or treatments. Patients’ lives are passing by each minute, never to be regained;  don’t make us to wait another 3 decades!

Thank you for your attention, 

Lily Chu, MD, MSHS, 

Burlingame, CA

(bolded text by the author)

The Great American ME Scandal

Read more @ stonebird.co.uk>>

CDC: ME is accompanied by neurologic and muscular signs and has a case definition distinct from that of CFS

‎"The name myalgic encephalomyelitis (ME) was coined in the 1950s to clarify well-documented outbreaks of disease; however, ME is accompanied by neurologic and muscular signs and has a case definition distinct from that of CFS."

http://www.cdc.gov/cfs/education/wb3151/chapter1-1.html

See also: The main characteristic of ME is an abnormally delayed muscle recovery after doing trivial things, if you don't have that, you don't have ME

David Tuller: It’s not rocket science to figure out that The PACE study included people who are depressed and don’t have CFS

Posted by Julie Rehmeyer on January 18th, 2012:

When I wrote that first story about the PACE study, I’d been focusing primarily on XMRV, not CFS more generally. I didn’t understand the problem with case definitions [a set of criteria for what symptoms should be required for a person to be diagnosed with CFS], and there was a context of controversy that wasn’t part of my awareness at the time. I wrote that story in a couple hours on deadline. It wasn’t until afterward that I realized that this wasn’t the piece I would have written had I known more about it.

I will say, though, that my story was better than most of the others on it, which for the most part didn’t have any caveats.

What dissatisfied you about the story?

I was driving home when it appeared, and by the time I got home I had half a dozen emails about the piece. I realized that I hadn’t focused on the issue of the case definition. I’ve been a public health student and I teach reporting about public health [at the University of California-Berkeley Graduate School of Journalism and School of Public Health’s new concurrent Master of Public Health/Master of Journalism program]. In the first semester, all public health students have to take epidemiology, and one of the things they learn is that if you’re doing research, you have to have a good case definition so that you know which patients have the illness and which don’t. The PACE study’s definition of CFS is six months of unexplained fatigue — period. It’s not rocket science to figure out that that’s likely to include people who are depressed and don’t have CFS. Fatigue is a common symptom of depression, but people with CFS have some symptoms that are not typical of depression.

It was really because of that that I ended up writing a second story, a month or so later, about case definition in CFS. I tried to put it in a larger context — that this issue had been fought over for years, and the PACE trial was the latest variation on it.

What made you want to write an even more in-depth piece, explaining the history of CFS research and relating that to the recent XMRV mess?

Writing the case definition story led me to start looking into the Centers for Disease Control’s role in defining the disease. I found that in 2005, the CDC created a new way of defining the illness. Using that framework, the agency calculated that the prevalence of CFS was four times what everyone else thought it was, and ten times their own previous estimate. But if four to ten times as many people now have it, obviously something is really wrong with your case definition, before or after. William Reeves was head of the CDC’s research program for CFS for two decades, and two years ago, they moved Reeves aside. They never publicly said why, as far as I could tell. Furthermore, in the 1990s, the CDC spent funds allocated for CFS research on other projects, then lied to Congress about it.

I think all of this is really important for understanding why patients can be so suspicious and paranoid. In most of the coverage, the XMRV situation was decontextualized from the experience of patients and history of the illness, although Amy Dockser Marcus did some terrific reporting in the Wall Street Journal about the back story. But no one had really focused in depth on the case definition problem and the CDC’s role in perpetuating that problem.

I didn’t want to write a rant. I wanted to write, “This is what happened with the epidemiology, and this is why the situation is so screwed up.” I wanted something that patients felt represented some of the frustration they’d experienced in the past 20 years.

Did you think of the story as an advocacy piece?

No. I’m not a patient. I didn’t want to write it as an advocate for people with CFS. I wrote it because there was an undertold story. I understood that it was something that would likely be useful to the patient community; to the extent that that’s the case, that’s great. My goal is to tell a story that’s interesting, and one that I think is important. Obviously I do think that the CDC has not done what people expected it to do in this case. I think of writing this piece as being a proper watchdog of a government agency in an area that hasn’t gotten much attention.

Read more>>


See also: World exclusive: Prof Wessely admits in the BMJ that there were no ME/CFS patients in the ME/CFS PACE trial
See also: PACE trial results are out: ME is caused by an oncogenic virus
See also: Cerebrospinal fluid profiles can differentiate between Lyme disease, ME/CFS and healthy controls
See also: The main characteristic of ME is an abnormally delayed muscle recovery after doing trivial things, if you don't have that, you don't have ME
See also: Operation Mincemeat aka the PACE trial, a thrilling true story of deceit and survival

An apology to patients with chronic fatigue syndrome

by professor TONI BERNHARD, JD:.

I’ve been sick since 2001 when I failed to recover from what appeared to be an acute viral infection. It has left me mostly house-bound, often bed-bound. In effect, I’ve had the flu without the fever for almost ten years: the aches and pains, the dazed sick feeling, the low grade headache, the severe fatigue. It cost me my career as a law professor; it cost me the ability to be active in the lives of my children and grandchildren. Because I meet the Centers for Disease Control (CDC) case definition, I’ve been given the diagnosis, Chronic Fatigue Syndrome (CFS).

Although there have been some promising developments (a possible connection to a retrovirus; the presence of unique proteins in the spinal fluid of CFS patients), as of this writing, there’s no proven cause and no cure.

This is not surprising, given that so little money is allocated for research into this debilitating illness. Why?

One reason is the absurd name. As others have pointed out, calling it, “Chronic Fatigue Syndrome,” is like calling Emphysema, “Chronic Cough Syndrome,” or Alzheimer’s, “Chronic Forgetfulness Syndrome.” On October 15, 2009, Dr. Nancy Klimas of University of Miami’s Miller School of Medicine spoke about the lack of research money to the New York Times: My H.I.V. patients for the most part are hale and hearty thanks to three decades of intense and excellent research and billions of dollars invested.

Many of my C.F.S. patients, on the other hand, are terribly ill and unable to work or participate in the care of their families.

I split my clinical time between the two illnesses, and I can tell you, if I had to choose between the two illnesses in 2009, I would rather have H.I.V. When doctors ask what’s wrong with me, I can give one of two answers, neither of which is satisfactory in the context of obtaining quality health care for myself and others with CFS. That leaves me in a no-win position in the doctor’s office.

Option #1: If I say, “I have Chronic Fatigue Syndrome,” I’m likely to be discredited as a witness to my own condition. I’ve had doctors tell me there’s no such thing as Chronic Fatigue Syndrome.

One doctor said: “Just drink some coffee.” Option #2: If I say, “I contracted a serious viral infection and never recovered,” it goes down better, but by saying this, I’m undermining the effort to bring legitimacy to the illness.

Legitimacy means research money.

By avoiding ...

It is the lack of quality of Psychiatric science and its distorted reasoning that enrages ME sufferers

David Allaby, publicservice.co.uk, 29 July 2011:


No one should have to endure threats of violence and malicious abuse for their professional commitment to the advance of medical knowledge, but while listening to the Today Programme interviews about ME/chronic fatigue syndrome and the hate campaign directed at those leading research into psychological based explanations for the illness, I had the urge to bang heads together. My annoyance began with "the scientist" interviewed in the role of victim. I was left to question whether his science might be as distorted as his reasoning expressed on Radio 4.

This story is not a new one. Psychiatrist Simon Wessely, well-known for his theories that myalgic encephalomyelitis is a type of neurosis, was telling the New Scientist in 2009 about the threats he faced. Now he tells the BBC's Tom Fielden: "People seem to prefer to be diagnosed with like a retro-virus, a potentially incurable, maybe even fatal illness, rather than an illness for which we do have some reasonable but not perfect treatment.

"That really attests to the strength of feeling here – I would rather have an incurable virus than a potentially curable disorder if the cure was treatment involving any acknowledgement of the social or psychological."

No, Dr Wessely, I suspect that that is not what ME sufferers feel – not even those who have descended to desperate extremist levels. It is the quality of the science and such distorted reasoning that enrages ME sufferers. They feel helpless and dismayed – and if you were genuinely listening to your patients, Dr Wessely, you would understand something of that.

They feel dismayed by the fact that most government funding into ME concentrates on research into the psychology and not the virology of the illness. They feel dismayed by NICE guidelines and doctors who persist with programmes of treatment that not only do not work but make them feel worse. They feel dismayed by a stigma that still surrounds the illness, stemming from early medical ignorance.

Dr Wessely accuses his hostile critics of "trying to make me into a leper". Well, that is just how many ME sufferers have been made to feel for years. They feel dismayed that research into viruses that consistently precede the onset of ME is ignored. Was it only last autumn that scientists at Dundee University had found abnormalities in the white blood cells of all children with ME/CFS in their study? Dundee's Professor Jill Belch said: "It's important because some people do suggest that ME is a disease of the mind and here we are showing that it is a disease of the body."

They obviously didn't tell Dr Wessely. Anyone whose life has been shattered by ME or CFS – they can be separated – would take any cure, anything that could offer them a return to normality. I would like to hear from the medics who suffer from ME. In my 15-year interest in the illness I have yet to find one who agrees with the Wessely theory. No matter how sceptical they may have been, they seem to be instant converts to a physical cause once they become sufferers.

I wish Dr Wessely nothing but good health and back the call for hostilities against him to be halted. But there are far more victims in this story – the tens of thousands of people in the UK whose lives have been almost shut down by ME.

I will write more on my experience as a parent of an ME sufferer in Public Servant magazine.

David Allaby

Myalgic Encephalomyelitis: International Consensus Criteria, Journal of Internal Medicine, July 2011

by tonybritton on July 22, 2011:

From The Journal of Internal Medicine, July 2011 (manuscript accepted 15 July 2011 and published online on 20 July 2011)


Myalgic Encephalomyelitis: International Consensus Criteria


Bruce M Carruthers, MD, CM, FRCP(C) (coeditor); Independent, Vancouver, B.C., Canada

Marjorie I van de Sande, BEd, GradDip Ed (coeditor); Independent, Calgary, AB, Canada

Kenny L De Meirleir, MD, PhD; Department of Physiology and Medicine, Vrije University of Brussels, Himmunitas Foundation, Brussels, Belgium.

Nancy G Klimas, MD; Department of Medicine ,University of Miami Miller School of Medicine and Miami Veterans Affairs Medical Center, Miami, FL, USA

Gordon Broderick, PhD; Department of Medicine, University of Alberta, Edmonton, AB, Canada

Terry Mitchell, MA, MD, FRCPath; Honorary Consultant for NHS at Peterborough/Cambridge, Lowestoft, Suffolk, United Kingdom.

Don Staines, MBBS, MPH, FAFPHM, FAFOEM; Gold Coast Public Health Unit, Southport, Queensland; Health Sciences and Medicine, Bond University, Robina, Queensland, Australia AC

Peter Powles, MRACP, FRACP, FRCP(C), ABSM; Faculty of Health Sciences, McMaster University and St. Joseph’s Healthcare Hamilton, Hamilton, ON, Canada.

Nigel Speight, MA, MB, BChir, FRCP, FRCPCH, DCH; Independent, Durham, United Kingdom

Rosamund Vallings, MNZM, MB, BS, MRCS, LRCP; Howick Health and Medical Centre, Howick, New Zealand.

John Chia, MD; Harbor-UCLA Medical Center, University of California, Los Angeles; EV Med Research, Lomita, CA, USA

Alan R Light, PhD; Depts or Anesthesiology, Neurobiology and Anatomy,University of Utah, Salt Lake City, Utah, USA.

Judy A Mikovits, PhD; Whittemore Peterson Institute, University of Nevada, Reno, NV USA

Martin L Pall, PhD; Department of Biochemistry & Basic Medical Sciences, Washington State University, Portland, OR, USA

Staci Stevens, MA; Department of Sports Sciences, University of the Pacific, Stockton, CA USA.

et al.



Myalgic encephalomyelitis (ME), also referred to in the literature as chronic fatigue syndrome (CFS), is a complex disease involving profound dysregulation of the central nervous system (CNS) [1-3] and immune system [4-8], dysfunction of cellular energy metabolism and ion transport [9-11], and cardiovascular abnormalities [12-14]. The underlying pathophysiology produces measurable abnormalities in physical and cognitive function and provides a basis for understanding the symptomology.

Some symptoms of the Fukuda criteria overlap with depression whereas the Canadian Consensus Criteria [20] differentiate ME patients from those who are depressed and identify patients who are more physically debilitated and have greater physical and cognitive functional impairments [21].

The six-month waiting period before diagnosis is no longer required. No other disease criteria require that diagnoses be withheld until after the patient has suffered with the affliction for six months. Notwithstanding periods of clinical investigation will vary and may be prolonged, diagnosis should be made when the clinician is satisfied that the patient has ME rather than having the diagnosis restricted by a specified time factor. Early diagnoses may elicit new insights into the early stages of pathogenesis; prompt treatment may lessen the severity and impact.


>--< The pathological low threshold of fatigability of ME described in the following criteria often occurs with minimal physical or mental exertion, and with reduced ability to undertake the same activity within the same or several days. >--< Individuals meeting the International Consensus Criteria have myalgic encephalomyelitis and should be removed from the Reeves empirical criteria and the National Institute for Clinical Excellence (NICE) criteria for chronic fatigue syndrome. These guidelines are designed specifically for use by the primary care physician in the hope of improving rapid diagnosis and treatment by first-line medical care providers. This may result in the development of an additional short form version that would build on the relationships linking symptoms to formulate an abbreviated screening protocol. For the first time clinical, paediatric and research applications are provided, which will advance the understanding of myalgic encephalomyelitis and enhance consistency of diagnoses internationally. The compulsory critical criteria allow comparable data to be collected in various locations and may assist in developing consistent biomarkers and further insights into the mechanism and etiology of myalgic encephalomyelitis. Full ARTICLE

See also: The main characteristic of ME is an abnormally delayed muscle recovery after doing trivial things, if you don't have that, you don't have ME

Going into hospital far riskier than flying

By Stephanie Nebehay
GENEVA | Thu Jul 21, 2011:

(Reuters) - Millions of people die each year from medical errors and infections linked to health care and going into hospital is far riskier than flying, the World Health Organization said on Thursday.

"If you were admitted to hospital tomorrow in any country... your chances of being subjected to an error in your care would be something like 1 in 10. Your chances of dying due to an error in health care would be 1 in 300," Liam Donaldson, the WHO's newly appointed envoy for patient safety, told a news briefing.

Read more>>

July 2011: RCGP, a.k.a. the Mrs Simon Wessely College tries to reclassify ME/CFS again

The RCGP tried to reclassify ME/CFS a few years ago from a neurological disease as classified by the WHO since 1969 into a psychiatric disorder, ignoring all the evidence that this is a severely disabling physical disorder. They had to reverse things after the ME Association and a few other ME charities stepped in.

Now on 8 July 2011, the RCGP are trying the same trick again, using the Oxford criteria, i.e. tired all the time, which has no relevance to ME/CFS as you can see in the picture below.



For those of you who don't know, Dr Clare Gerada is a London-based GP and Chair of Council of the Royal College of General Practitioners. She is also the wife of Prof Simon Wessely whom I don't need to introduce.


Full ARTICLE



See also: Cerebrospinal fluid profiles can differentiate between Lyme disease, ME/CFS and healthy controls

See also: ME/CFS: Mitochondria, not hypochondria; Professor of Psychology, Rhona Johnston shows that ME/CFS is NOT a psychological condition (on a UK Government website !!!) … a MUST READ

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Nevada leukaemia cluster: Evidence of an infectious etiology, Could it be... (XMRV) a retrovirus?

Xmrv Positive:

Nevada leukaemia cluster: Evidence of an infectious etiology. 14 children got ill with Acute lymphocytic Leukemia in the space of 4 years, including 9 cases within a few months. The CDC investigated, and reported. Could it be... Gulp... A retrovirus? fallon county is near Reno Nevada.

Full ARTICLE

WHO concerned about mental health definitions from DSM

BMJ 2011; 342:d3830 doi: 10.1136/bmj.d3830 (Published 20 June 2011)
Cite this as: BMJ 2011; 342:d3830
http://www.bmj.com/content/342/bmj.d3830.extract
Letter
Response
World Health Organization responds to Fiona Godlee and Ray Moynihan
Geoffrey M Reed, senior project officer, revision of ICD-10 Mental and Behavioural Disorders1, Tarun Dua, medical officer, evidence, research and action on mental and brain disorders1, Shekhar Saxena, director1
+ Author Affiliations

1Department of Mental Health and Substance Abuse (MSD/MER), World Health Organization, CH-1211 Geneva, Switzerland
reedg@who.int

In her editor’s choice in the print issue of 14 May Godlee asks: “Who should define disease?” 1 This question was answered by international treaty in 1948, when the World Health Organization was founded as a specialised agency of the United Nations. The WHO has unique authority to establish global health standards and secure international agreement on defining diseases. Among the core functions in its constitution are responsibility for international definitions and nomenclatures of disease, and standardising diagnostic procedures. 2 The WHO’s 193 member states have agreed to use the International Classification of Diseases (ICD) as a basis for reporting health information that is usable and comparable across countries. The World Health Assembly—comprising the health ministers of …
http://www.bmj.com/content/342/bmj.d3830.extract

This is a terrible, debilitating and essentially lifelong disease which, like AIDS, suppresses the immune system

June 08th, 2011 by Business Wire:

A new Web-based television program aims to shine a light on Chronic Fatigue Syndrome, sometimes referred to by patients as “the living death” disease. The disease also is known by its old name – and the one favored by many patients – myalgic encephalomyelitis.

The program is called “M.E./CFS Alert” and can be accessed on the You Tube Channel LIMFIL88. The program will soon be accessible at www.whchronicle.com, the Web site of the weekly news and public affairs television program “White House Chronicle.”

The program was conceived by Llewellyn King, a Washington columnist and executive producer and host of “White House Chronicle” and Deborah Waroff, a New York writer and security analyst, who has suffered from the disease for 22 years.

“This is a terrible, debilitating and essentially lifelong disease which, like AIDS, suppresses the immune system. Our program has three objectives: to comfort the suffering; to change attitudes among physicians and medical institutions, and to implore the government to provide critically needed research funds,” Waroff said.

An estimated 1 million Americans are so severely impacted by the disease that for months and years they are house-bound. Worldwide some 17 million have lost the ability to lead normal lives and work.

Often those who have suffered total physical collapse are ostracized because of bigotry and ignorance. Institutions, like Britain's National Health Service, treat M.E./CFS as a psychiatric disease, even though patients are in great physical pain.

The disease knows no economic, geographic or social boundaries. Author Laura Hillenbrand is the best-known American victim.

“In more than 50 years of reporting, I've never experienced so many people so misunderstood and abandoned by society and many doctors. I've worked on three continents and reported from around the world, but never have I had a response like the one I've had from writing about M.E./CFS,” King said.