Monday, February 28, 2011

Why CBT psychiatry is unethical

Andie Pring:

Many so called expert ME doctors (some of whom are worryingly on the MRC panel) are simply studying fatigued people and applying their findings to ME sufferers with extremely damaging effects.

Sadly, as very few people are given the necessary tests in the UK to clarify whether they are suffering with neurological ME the vast majority are given the label ‘CFS’ along with a nod to withhold testing and treatment; once given this label no further testing is offered (as suggested in the NICE guidelines) instead patients are granted insufficient treatment protocols such as antidepressants (only a small proportion of sufferers become depressed and this is usually in response to continued suffering, loss of income, loss of career, loss of home and continued ignorance from government officials, doctors, media and the public in general), pain killers and talk and exercise therapy (which can cause serious health repercussions to those patients with compromised hearts and circulatory systems (approximately 1/3 of sufferers).

Many patients are seriously ill and being denied necessary testing and treatment.

We would respectfully ask you to consider what you think happens to cancer and AIDS sufferers if they are left untreated?

Would it be ethical to deny them treatment?

A diagnosis of CFS will always be a misdiagnosis and a diagnosis that results in the cessation of necessary testing and treatment. This is unethical. Read more>>

See also: PACE trial results are out: ME is caused by an oncogenic virus

CROI are very worried that the public finds out about XMRV

by XMRV Global Action on Sunday, February 27, 2011:

We sent out a reminder yesterday regarding the 18th Conference on Retrovirus and Opportunistic Infections scheduled to begin today, February 27th - March 2, 2011. There will be 2 poster presentations related to XMRV.

XMRV: New Findings and Controversies
XMRV and GBV Virus-Host Interaction

Thanks to Andrea, we now know that Dr. Judy Mikovits and Drs. Sandy and Frank Ruscetti were not invited and their abstracts were not accepted on how XMRV affects the immune system. In addition, John Coffin was part of this abstract committee.

You can see a list of the Scientific Program Committee members here, which includes John W. Mellors, MD.

Thanks to K, we now know the sponsors for this years conference. "Sponsored by the Foundation of Retroviral and Human Health, NIAID and CDC."

If you are curious as to why the committee would not invite the researchers who made the biggest discovery in the retroviral field since the discovery of HIV/AIDS and why their abstracts were not accepted, please contact the conference secretary with your inquiry.

Conference Secretariat
115 South Saint Asaph Street
Alexandria, VA 22314
phone: 703-535-6862
fax: 703-535-6899

So this is another indication that XMRV is NOT a contaminant ...

Veterans demand proper testing and treatment

Veterans in Gulf syndrome protest,

Sick Gulf War veterans will mark the 20th anniversary of the end of the conflict with a protest march on Monday.

The former military personnel will demand proper testing, treatment and compensation for those suffering from Gulf War Syndrome following service in the campaign to drive Iraqi dictator Saddam Hussein out of Kuwait.

It is 20 years tomorrow since then US president George Bush senior declared a ceasefire as Allied forces advanced to within 150 miles of Baghdad.

The six-week Gulf War started on January 16, 1991, after the expiry of a United Nations Security Council deadline for Iraq to withdraw from Kuwait, which it invaded in August 1990 in a dispute over oil. Saddam famously declared that "the mother of all battles has begun" as the US and UK-led coalition of 34 nations launched a massive air offensive that involved more than 100,000 sorties and the dropping of 88,500 tons of bombs. Read more>>

Dear Mr. Burstow, it is time for proper ME research and treatment

Andie Pring:

"Dear Mr. Burstow,

Following your recent speech in parliament as part of the ME adjournment debate, we would like to address several issues that arose.

The first point is a point of accuracy, which we believe was also picked up by the Countess of Mar and Dr. Shepherd who both attended the debate, and which you now concede was an error on your part. You said:

“The Department does follow, and will continue to follow for the time being, the World Health Organisation convention in how we describe and refer to the condition-that is, to call it CFS/ME. That is the WHO definition; it is not a specific term that the Department of Health has alighted on and no one else uses. It is important that that be understood.”

This point is incorrect. "CFS/ME" does not exist according to the WHO. ME (as benign myalgic encephalomyelitis) is listed in the neurological conditions' section under G93.3 post-viral fatigue syndrome. This is extremely important for two reasons. It confirms that 1) ME is a neurological condition and 2) that the illness has an infectious onset. CFS is listed in the index where it points the reader to G93.3. Other illnesses that sound similar to "CFS" are listed separately in ICD-10; 'Neurasthenia' and 'Fatigue syndrome', both at F48.0, and 'Malaise and fatigue' at R53. Perhaps patients seem pedantic in repeatedly stating this fact, but this is where the waters have been muddied and research has become a farcical mess. Many, so called, expert ME doctors (some of whom are worryingly on the MRC panel) are simply studying fatigued people and applying their findings to ME sufferers with extremely damaging effects.
Sadly, as very few people are given the necessary tests in the UK to clarify whether they are suffering with neurological ME, the vast majority are given the label ‘CFS’ along with a nod from NICE to withhold further testing and treatment. After being 'labelled' incorrectly, patients are then offered inadequate treatment protocols such as a) antidepressants (only a small proportion of sufferers become depressed and this is usually in response to continued suffering from loss of health, loss of career with subsequent loss of income, loss of education, loss of home, loss of support, and continued ignorance from government officials, doctors, media and the public in general), b) pain killers and C) talk and graded exercise therapy (which can cause serious health repercussions to those patients with compromised hearts and circulatory systems (approximately 1/3 of sufferers)). Many patients are seriously ill and yet they are denied necessary testing and treatment. Consider what happens to a cancer or AIDS sufferer if left untreated? Would you suppose it ethical to deny them treatment? ME sufferers DO die from the condition, at least they die from complications arising from the condition (as is the case with AIDS). A diagnosis of CFS will always be a misdiagnosis and a diagnosis that results in the cessation of necessary testing and withholding of vital treatment. This is deeply unethical.

Worryingly, you do not appear to appreciate the level of ignorance surrounding ME that is found within the medical profession. It is not possible for patient groups to work with the NHS, nor for patients to expect their doctors to come up with individual treatment programmes, when so many false assumptions are made about the illness (and therefore the patient) in the first place.

This observation of ignorance within the NHS is one that others have also made. The charity Invest in ME is currently trying to set up a research facility in East Anglia and has found it very difficult, despite the fact that some resources are in place e.g. the PCT have agreed to fund examinations. Many consultants admit they don't believe in the diagnosis of ME, even though they are happy to hand the diagnosis out. This is tantamount to misdiagnosis and shows an urgent need for education of healthcare staff about the condition. The government may recognise ME as a neurological condition but most doctors certainly do not. If they did, ME patients would be routinely referred to a neurologist which does not often happen, and when it does the neurologist refers them to an occupational therapist to be treated for "fatigue".

The latest research is showing evidence of persistent viral infection in sufferers and last week's big findings by the University of Medicine and Dentistry of New Jersey, in which over 700 unique proteins were identified in the spinal fluid of ME patients, seems to have escaped the media in the UK due to the frenzy over the widely-discredited PACE Trial. We would do well to pay close attention to this cerebrospinal fluid work (in addition to the research on XMRV) as it validates previous studies carried out in this area and gives tangible proof that something is happening in the neurological system of those afflicted.

The current system is failing sufferers and things will not change until these sorts of findings are integrated into GP care programmes. Government acceptance is one thing, but it needs to be carried through to the patient. There are currently over 4,000 published papers that indicate the biological nature of ME. How many more times do these papers need validating before the findings are used to provide effective treatments?

You state that it is not the job of the government to dictate how the MRC spends its money. In some situations this might be true, but in the case of ME research, where so much money has been wasted on pointless psychiatric studies, something needs to be done. If ME is considered a neurological illness then why do psychiatrists sit on the panel that decides which projects get funded? They are simply not qualified to understand what makes a good research proposal for neurological ME. Where are the neurologists, immunologists, virologists and knowledgeable physicians?

Whilst we welcome the new funding from the MRC, the areas highlighted for research are not specific enough. How can we ensure that the money is going to go to the right people?

The research money must be awarded to those who use a properly defined cohort. Studies that exclude patients with neurological signs, autonomic system dysfunction, post exertional malaise and immune dysregulation (as in the recent PACE Trial) are excluding those who suffer with neurological ME, the exact people they then say they are studying. These erroneous findings are then anticipated to work on the entire community of sufferers. In view of this, is it any wonder, that the interventions recommended by the PACE Trial worked on some patients? CFS is a misdiagnosis and cohorts will have any number of illnesses from burn out, fatigue, depression, adrenal or thyroid disease to lupus or Lyme disease. Studies should, therefore, be carried out on the most severely affected people. These people must have ME and not just chronic fatigue. Some experts have suggested that ME or rather "CFS" (which some doctors wrongly believe to be the same thing, but which is in fact a diagnosis reached after testing is prematurely halted) is being overdiagnosed. This seems likely given the ease with which doctors hand out the diagnosis. The Canadian Criteria should be used for diagnosis and only those who meet it should be studied. This is one reason why research should not be done on patients at the CFS/ME clinics that are set up around the country. Many people who go there are only suffering from fatigue and the most severely affected will not be able to attend the clinics for practical reasons.

One of the best things that the government could do (perhaps APPG could help here?) would be to find some money to fund a campaign that informs doctors and medical schools about what ME really is and how severely it affects people. What is to be gained by the government's recognition of ME as a neurological condition, if the NHS, benefits agencies and medical insurance companies do not also accept this classification? We believe there are many reasons for this ignorance but if we could counter some of the misinformation, patients at least may receive a less hostile reception when they do seek help.

Yours sincerely,

Andrea Pring (Devon; sick for 6 years)
Emily Richards (Dorset, sick for 2 years)

Below is a selection of quotes sent to us for inclusion in this letter:

Diagnostic Criteria

“As there MAY be with any long term chronic illness and especially as ours is fraught with such medical ignorance, neglect, and abuse, leading to all the social and economic factors too, social exclusion, loss of income, difficulty obtaining benefits etc. Psychological SYMPTOMS should be excluded from DIAGNOSTIC criteria and hence even more need for disease biomarkers to be agreed. Oxford criteria must be scrapped” Jo Best, London; sick for 19 years

“Until the current diagnostic criteria for CFS is either scrapped or used only to define those with idiopathic chronic fatigue and a specific, strict criteria for those with genuine ME be applied, such as the Canadian Criteria, then the diagnosis and subsequent research will be skewed. The Canadian Criteria was not intended for diagnosis but it fits the serious nature of the disease and excludes more patients that don't have autonomic, central nervous system and immune system involvement. Until the diagnostic criteria issue is dealt with, there will always be problems with the current system and high patient complaints. The Canadian Criteria should be rolled out for diagnosis and research in the UK. The differences between those with neuro-immune disease, ME and CFS will then become clear.” Christine White, Lancaster;
sick for 8 years

Mental Health Label

“We do not have a problem with a mental health label if we have mental health problems. We're angry at the label being attached to us because ME is not a mental health problem. How would you feel if you had a diagnosis of AIDS or cancer and were referred to mental health services - no chemo and no anti-retrovirals?” Sarah Lawry, Glasgow, Scotland; sick for 17 years

“Chronic fatigue is known as part of the clinical picture PTSD, depression and some other mental health conditions. We have no problem being labelled mentally ill, if psychological factors were a causation in ME.” Susan Rogers, Beckenham, Kent; sick for 2 years

“One of the most compelling sources of hostility between patients and doctors is the hypothesis proposed in the "Lancet" by Wessely and Sharpe in 1999, that CFS/ME is a psychiatric condition, characterised by a history of emotional disorder and childhood abuse. (33 Wessely, C Nimnuan, M Sharpe, Functional somatic syndromes: one or many? Lancet 1999; 354: 936-39, 11 September 1999).

Given that Sharpe’s patients were part of the study which NICE based their evidence on for developing Guideline 53 is it any wonder patients are angry?” Gabi Jacobs, Sussex; sick for 2 years

“Is he aware that, unlike other illnesses for which CBT is used as an adjunct, CBT as applied to ME is the central treatment? And can he assure us that anyone undertaking a course of CBT at a CFS Clinic is not then labelled as being mentally unwell. As others have mentioned, I wouldn't be kicking against a diagnosis of depression for example, if I were depressed. He's misinterpreting our reaction against being labelled mentally ill, it's not that we are rejecting the stigma of mental ill health, it's that we are rejecting the label of mental ill health because it is not a symptom of ME. Which is not to say someone with ME won't get depressed at some point down the road - having a disabling illness that robs you of your life etc would be enough to make the hardiest of souls feel blue. But it's the least of our worries - help us with the other stuff and depression is far less likely to arise as a reaction to the neglect.” Sue Howley, London, sick for 3 years


Why can't the government put pressure onto the MRC? After all, isn’t the funding for research allocated from the government? Susan Rogers, Beckenham, Kent; sick for 2 years

“The government will not take responsibility for whatever research the MRC decide to spend taxpayer money on. This is unacceptable. They (MRC) must be held accountable for wasting taxpayers money on psychological/psychosomatic research into ME. Where has all the psychiatric research benefited the ME community? Oh yes, clinics set up by the dept of Mental Health to give us CBT and GET. Wonderful!” Paul Dacre, Buckinghamshire; sick for 9 years

The Involvement of Psychiatrists

“What value is there in having so many psychiatrists/psychologists on the MRC group who will determine which research proposals get a share of the 1.5 million.” Sue Howley, London; sick for 3 years

“We know there have been very good research proposals but the heavily laden psychiatric committee embargoes them. Why do psychiatrists have to be involved at all?” Rosie Cox, Cardiff; sick for 41 years

NICE Guidelines

“The NICE guidelines fail to address this complex neurological condition.” Anne Robertson, Dunfermline; sick for 2 years

“You are wrong to say that the NICE Guideline is only a suggestion of treatment as we all know our GPs refuse to countenance anything which isn't advised by NICE for fear of reprisal.” Rosie Cox, Cardiff; sick for 41 years

“What I really want to know is why, when I've had tests on my blood which have found serious anomalies, my GP just raises his hands in the air and does nothing? Is it because I paid to have it done privately? Does that make the results null and void? I can't afford to continue to go to private doctors.” Caro Retallick, Anglesey; sick for 19 years

Personalised Care Plans

“I'm intrigued about this concept of personalised care plans. I'd like Mr. Burstow to get in touch with my GP and explain what this means, what their duty of care is towards me. Both GPs at my local practise told me at the onset that they believed CFS (that was my diagnosis) to be 'a real disease with a psychological component'. The only thing they did for me apart from the usual blood work was to refer me to Kings CFS Clinic (who use CFS & ME interchangeably, as if they were the same thing), despite the fact I'd already tried CBT. If we're free to decline an invitation to CBT, what other 'treatments' does Mr. Burstow believe to be available to us because my local Surgery could do with that information? My GP has no idea how much or how little progress I've made and shows no interest." Susan Rogers, Beckenham, Kent; sick for 2 years

"The only treatment my GP could offer was the psychological treatment at the local ME clinic. When I asked for prescriptions for some of the supplements that are recommended, I was refused. How can GPs facilitate personalised plans when their knowledge is based on NICE guidelines or psychological material? There cannot be any patient choice until the medical profession and social care accept that it is a neurological condition. Fragmented and inadequate NHS services will remain as there is no real commitment by some.” Susan Rogers, Beckenham, Kent; sick for 2 years

"Many neurologists either do not accept ME as a neurological condition and/or are poorly informed and usually follow, like GPs, the NICE guidelines. The same point applies to GPs. How can GPs develop personalised plans with us, when they have the same attitudes as neurologists?" Susan Rogers, Beckenham, Kent; sick for 2 years

Neurological Alliance

“It seems to be to be a cross between a glorified directory and a quango. I'd like to know exactly how engaging with that is supposed to help us?” Rosie Cox, Cardiff; sick for 41 years

“The Neurological Alliance is our friend? Neurologists consider ME or CFS to be a psychiatric diagnosis. When I got unwell, the only specialist I was referred to was a neurologist who went on to refer me to Alastair Santhouse of Kings. I got diagnosed and the only option I was given was for a course of CBT. I went in good faith but it didn't help. I'm still unwell, no surprises there.” Sue Howley, London; sick for 3 years

Patient Experience

“I have worked for 40 years, paid taxes for 40 years and paid NI for 40 years. I have been on DLA for 6 years and if I were still able to work I would still be on £40,000 pa and have a company car instead of a Motorbility car. I would travel the country using my first class rail warrant and stay in 4* hotels using my generous expense account. I had dignity, self belief, respect and I loved my job. However, it would seem that one day I decided to become disabled, poverty stricken and treated like a criminal. As a life style choice it was a disaster! Now it seems I am guilty of attempted fraud, worthless, a burden on society and a waste of space. Does anybody really believe that I prefer my life now? Drug addicts, while also needing help, are treated with more compassion and they made an informed choice to start using. I did not choose to be this way and I expect to be given as much support.” Derek Benyon, Leicestershire; sick for 7 years

“According to the BMA, ‘The right to the highest attainable standard of physical & mental health is a fundamental human right, protected by International Law.’ Are UK citizens to believe we obtain the highest standard of health for patients with ME, classified by the WHO since 1969 as a Neurological Illness, by abandoning them to the mercy of biased Psychiatrists who psychologise ME & declare without evidence or justification that ME Sufferers are ‘Malingerers’ & ‘The Undeserving Sick of our society’. Are these Doctors exempt from the first tenet of medicine, ‘First Do No Harm’? What of our Government, apparently theirs is ‘The obligation to protect’ as such there is ‘a duty of the state to prevent violations of the right to health by others.’ Why is the UK Government failing in its duty to protect ME Patients health from these violations? In fact they are complicit by allowing the unconscionable denigration of such Doctors to perpetrate serious iatrogenic harm on patients! In light of the BMA’s ‘Right To Health’, why do the Medical Establishment & the Government continue to ignore the thousands of International Research papers demonstrating that ME is a serious biomedical illness, recently linked to a Retrovirus? Why is the UK Government letting biased rhetoric & vested interests control Public Health Policy, MRC research funding & the media via the Science Media Centre,in the process discriminating against the neurologically ill? In doing so the Government is neglecting its legal obligation & its moral duty, flouting both in favour of the flawed ideology of Doctors to whom the best advice one can give is ‘Physician, heal thyself! The UK is fast becoming an International laughing stock over this situation, it is a Human Rights Travesty & our country deserves better!” Geraldine Hannaway, Glasgow; sick for 28 years

“I am sick and tired of ME/CFS being referred to as a hidden illness when so many people who have this are visibly ill and/or disabled. I have had ME for 8 years now and at the worst I was bed bound for 9 weeks then confined to a wheelchair for 5 years, I am now able to walk slightly but due to muscle fatigue and excruciating pain I either use a 4 wheeled walker or a electric wheelchair. When will we get some understanding for what those with ME/CFS have to go through, not just on a daily basis but an hourly basis, and when will people start believing that this is physical? Many studies have proved that this is physical, so when will GP’s Consultants and the Government get a grip, and begin to help us affected have a life?” Gemma Richards, Ipswich, Suffolk; 29 years old, sick for 8 1/2 years

“I had told Dr. Alexis Shelekov that each nerve in my body felt like it had been braided, and then sunburned, and then BEATEN with a piece of rubber hose to within an inch of my life. and Dr. Shelekov seemed a bit stunned, and said that in other outbreaks of M.E. around the world that he had studied in the 1950's and 1960's that patients were quite ill, but not in THIS much pain. And Dr. Marc Loveless was sitting next to us at this big table at lunch, and he said, "No, Dr. Shelekov, this man is telling you the truth. As, the senior MD in the state of Oregon for public health care, I have treated more than 2500 AIDS and ME/CFS patients in the past 12 years and by FAR, my ME/CFS patients are MORE sick and MORE disabled every single day of their lives, than my AIDS patients are, up until the final two months of life!" (Dr. Mark Loveless in 1992) Thomas Hennessy, Florida, US; sick 24 years (became ill whilst living close to Lake Tahoe, Nevada - where the first US outbreak occurred)

Change Needed

“We are at a turning point that will be remembered in history. Now, it's more clear than ever that there are physical processes causing this disease. The future will look back to this moment and see how it divided those who clung to an outdated, incorrect model from those who took a clear look at the science and made the logical decision to support physiological research, bringing about, at long last, effective treatment.” Kassy Fatooh, Benton, California; sick for 3 years and 9 months - mother of two kids who have also been ill for the same length of time"

The FITNET Trial, the Dutch PACE trial

Run by the Dutch Wessely, Gijs Bleijenberg ( and Elise M van de Putte ( aka CFS in children is mum's fault;

So CBT will be best; no need to waste millions on another silly trial.

Protocol for the FITNET trial, BMC Neurology 2011, 11:23 doi:10.1186/1471-2377-11-23

See also: PACE trial results are out: ME is caused by an oncogenic virus

Report from the International Science Symposium on ME/CFS, Bond University Australia

International Science Symposium on ME/CFS, Bond University, Queensland Australia, 3-4 December 2010.. Sponsored by The Alison Hunter Memorial Foundation

FULL Report (pdf)

XMRV may compromise immune function in ME/CFS patients, facilitating herpes virus replication

Authors: A Martin Lerner, Safedin Beqaj:

Valacyclovir and valganciclovir inhibit viral EBV, HCMV, or HHV6 replication by inhibiting the core proteins, DNA polymerase, and thymidine kinase, which occupy
approximately the 50th gene of the early, middle, and late sequential cascade of the several hundred herpesvirus genes in each of the three genomes.

The murine retrovirus XMRV may compromise immune function in ME/CFS patients, facilitating nonpermissive herpesvirus replication.16,17

We suggest that in ME/CFS patients, valacyclovir and valganciclovir inhibit the herpesvirus lytic replication cycle and thus prevent “recruitment of new host cells to ME/CFS patients” and indirectly inhibit nonpermissive virus replication, thereby facilitating recovery from ME/CFS illness18


Surprisingly, after beginning valacyclovir/valganciclovir, the earliest time at which clinical improvement began was 6 months, which is far beyond what might customarily be expected.

See also: If you take longterm Valtrex - READ THIS! or See also: Herpesvirus antiviral treatment reversed CFS illness in 79 of 106 Group A CFS patients

FULL article

A paradigm linking herpesvirus immediate-early gene expression apoptosis and ME

A paradigm linking herpesvirus immediate-early gene expression apoptosis and myalgic encephalomyelitis chronic fatigue syndrome

Authors: A Martin Lerner, Safedin Beqaj:

Published Date February 2011 ,
1Department of Medicine, William Beaumont Hospital, Royal Oak, MI, USA; 2DCL Medical Laboratories, Indianapolis, IN, USA

There is no accepted science to relate herpesviruses (Epstein–Barr virus [EBV], human cytomegalovirus [HCMV], and human herpesvirus 6 [HHV6]) as causes of myalgic encephalomyelitis (ME)/chronic fatigue syndrome (CFS).

ME/CFS patients have elevated serum immunoglobulin (Ig)G serum antibody titers to EBV, HCMV, and HHV6, but there is no herpesvirus DNA-emia, herpesvirus antigenemia, or uniformly elevated IgM serum antibody titers to the complete virions. We propose that herpesvirus EBV, HCMV, and HHV6 immediate-early gene expression in ME/CFS patients leads to host cell dysregulation and host cell apoptosis without lytic herpesvirus replication.

Specific antiviral nucleosides, which alleviate ME/CFS, namely valacyclovir for EBV ME/CFS and valganciclovir for HCMV/HHV6 ME/CFS, inhibit herpesvirus DNA polymerases and/or thymidine kinase functions, thus inhibiting lytic virus replication. New host cell recruitment thus ceases. In the absence of new herpesvirus, nonpermissive herpesvirus replication stops, and ME/CFS recovery ensues.

See also: If you take longterm Valtrex - READ THIS! or See also: Herpesvirus antiviral treatment reversed CFS illness in 79 of 106 Group A CFS patients

FULL article

PS: from their earlier research:
Valacyclovir (or famciclovir) for EBV
Both valacyclovir and famciclovir were given as 1 gm (14.3 mg/kg) every six hours.
When the patient weighed 79.5 kg, 1500 mg valacyclovir (or famciclovir) was given every six hours. Maximum acyclovir levels are present after 90–120 minutes (7.9–21 g/mL).29
Valacyclovir is excreted by renal glomerular filtration and tubular secretion. The elimination half-lives of acyclovir and penciclovir are in the range of 1.5–6 hours. Patients were instructed to drink at least 1500 mL of water daily to avoid valacyclovir-induced renal calculi. At the physician’s discretion, cimetidine (400 mg every 12 hours) and/or probenecid (500 mg every 12 hours) which inhibit(s) acyclovir tubular secretion were given to increase acyclovir serum levels.32,34
Valacyclovir and famciclovir do not effectively inhibit HCMV or HHV6 multiplication. In order to continue therapy, normal CBC, platelet count, aminotransferases, and urinalysis were required at physician visits every 4–6 weeks.

Valganciclovir for HCMV and/or HHV6
The valganciclovir ID50 for HCMV and HHV6 is 0.2– 2.8 g/mL. The ID50 for ganciclovir versus EBV is 0.5 g/mL.35 In this study valganciclovir was used for CFS patients with suspected HCMV or HHV6 infections. Valganciclovir is efficiently absorbed as ganciclovir, inhibiting human bone marrow progenitor cells and lymphocyte blastogenesis. After 0.5–1.0 gm doses, the average peak valganciclovir concentration
(Cmax) is 6.1 g/mL. Valganciclovir was also given after meals, thereby increasing its bioavailability. Valganciclovir was started at 450 mg once daily in the morning after food for three days, and then continued as two in the morning for three days; and finally given, two in the morning followed by 450 mg 12 hours later as a continuing dose. If elevated aminotransferase(s) occurred, valganciclovir was withheld for 1–2 weeks until
serum transaminases were normal. Valganciclovir was then continued 900 mg once daily. If the patient weighed .91 kg, 900 mg valganciclovir was given every 12 hours.

At 4–6 week visits, recorded entries were made for abnormal white blood cells, platelet counts, aminotransferases, participation in a smaller, randomized, blinded, placebo-controlled trial, weight gain or loss, substitution of famciclovir for valacyclovir, and any changes in dosage of valganciclovir, valacyclovir, or famciclovir.30

Fibromyalgia & Stress !

Posted by Lady of the Ozarks:

It's no secret that fibro and stress don't like each other. Do you know why, though? Stress releases certain chemicals, such as cortisol, GH, and norepinephrine.

Stress can cause many health problems, including, but not limited to: weight gain, high blood pressure, stroke, metabolic syndrome, poor sleep, immunity, anxiety, emotional eating, cognitive impairment, and you guess it...increased fibromyalgia symptoms.

What do you do about all this stress, though? I've always been incredibly annoyed at doctors whose advice was simply to "decrease your stress levels." I've felt like saying "Excuse me? If I knew how to make less stress in my life there wouldn't be so much stress in my life!" Read more>>

NIH: Estimates of Funding for Various Conditions and Diseases

Estimates of Funding for Various Research, Condition, and Disease Categories (RCDC)

Table Published: February 14, 2011

This table displays the annual support level for various research, condition, and disease categories based on grants, contracts, and other funding mechanisms used across the National Institutes of Health (NIH).

At the request of Congress, the NIH embarked on a process to provide better consistency and transparency in the reporting of its funded research. This new process, implemented in 2008 through the Research, Condition, and Disease Categorization (RCDC) system, uses sophisticated text data mining (categorizing and clustering using words and multiword phrases) in conjunction with NIH-wide definitions used to match projects to categories. The definitions are a list of terms and concepts selected by NIH scientific experts to define a research category. The research category levels represent the NIH’s best estimates based on the category definitions.

The NIH does not expressly budget by category. The annual estimates reflect amounts that change as a result of science, actual research projects funded, and the NIH budget. The research categories are not mutually exclusive. Individual research projects can be included in multiple categories so amounts depicted within each column of this table do not add up to 100 percent of NIH-funded research.

Consistent with the Administration’s emphasis on transparency, two separate columns are used to distinguish FY 2009 and FY 2010 actual support funded from American Recovery & Reinvestment Act (ARRA) accounts from projects funded by regular NIH appropriations.

The FY2007 data were produced from a reporting process historically used by NIH. The technical elements of the previous reporting process did not have the ability to produce uniform results and led to wide variability in the way research categories were coded. This process caused inconsistencies in reporting data. RCDC use of data mining improves the consistency and eliminates the wide variability in defining the research categories reported. The table shows historical data for FY2007 and data produced with the new RCDC methodology for FY2007 through FY2010. The FY 2011-2012 estimates are based on RCDC actual data.

My note: the way I understand things is that there is hardly any money for ME research ... just compare that with Behavioral and Social Science or Complementary and Alternative Medicine ...

Sunday, February 27, 2011

Mr Obama, PROPER funding and research is needed for this brutal and deadly infectious disease

from: Thomas Hennessy Jr
to: the general public
Re: XMRV in the world's blood supply.

in the USA, the National Cancer society is a HUGE, well oiled machine! and the Susan j. Komen Breast Cancer non-profit association are also GREAT marketers..I agree with you all completely who have raised this subject over the past few months! we need to link up with the winners and drop the losers.

did you know that Dr. Judy Mikovits of the WPI in Nevada lost her stepfather to prostate cancer? She was a top Cancer researcher at the National Cancer institute for 22 years. She left that job to work for the WPI.

she has told me that she NEVER has seen a group of such sick people be SO DISRESPECTED by so called medical experts in her entire life! she said it is a crime against humanity the way we have been treated by our own government and all the so called "medical experts" in this world! Dr. Judy gets it! So, she teamed up with Dr. Silverman, a very famous prostate cancer researcher at the Cleveland Clinic.

She also works with Dr. Frank Ruscetti, the doctor who was a co-discoverer of HIV, the virus that helps cause AIDS and Dr. Ruscetti also found HTLV-1, the SECOND known human retrovirus, and now they have found XMRV in MANY CFS patients.

These are some of the BEST CANCER researchers on this planet!! They got some funding from Harvey and Annette Whittemore, who teamed up with the world famous and world class, Dr. Dan Peterson (who helped me win my disability case some 22 years ago!) and in honor of their beautiful young daughter, Andrea, the Whittemores opened the WPI last summer.

They now need PROPER funding! They have blazed the trail. We now need to FORCE our governments to fund their operations. Until they mess up, THEY need to be funded!!

The team at the WPI have also found this new human retrovirus in the blood of some autistic kids and 100% of M.E. and CFS patients who tested positive for XMRV ALSO were positive for LYME disease! Every single one!

PLEASE spread this post info far and wide! Why are not the VERY top researchers in the entire world being sent with buckets full of cash to Reno, Nevada and with video cameras and electron microscopes in hand to copy VERBATIM the procedures of the WPI!

If 4 to 7% of our nation's blood supply has XMRV floating around in it..
that is a very dangerous situation. and Since XMRV has been SHOWN to exit the peripheral blood supply of macaque monkeys within 4 to 6 weeks, BUT, these same monkey are found to have XMRV in many of their organs nine months later...then something is VERY, VERY, VERY wrong with this picture! Our government has been EXTREMELY cavalier with the blood of Americas for the past quarter of a century.

With the recent reports of the brilliant Dr. James Baranuik at Georgeown University, who isolated many inflammatory proteins in the spinal fluid in both sick Gulf War Illness patients and M.E. and CFS patients and he found that these protiens were NOT in healthy controls, he showed, that YOU can NOT fake this stuff, Folks! and This week, the New Jersey school of Dentistry, including long time M.E. researcher, Dr. Benjamin Natelson published a paper in which they isolated hundreds of inflammatory proteins in the spinal fluid of M.E. and CFS patients and they did NOT find these same proteins in the spinal fluid of healthy controls!

We keep hearing stories of some 5,000 peer review articles with biological markers like inflammatory cytokines, and RNLase pathways. And STILL our governments all over the world, and large insurance companies deny disability payments and even though we are losing tens of billions of dollars in Tax revenues from some of the hardest working people on the planet, they REFUSE to acknowledge the pain and suffering right in front of them.

Many women have told me that they would have LOVED to seduce Stevie Ray Strauss, or Simon the weasal, or Willy Wonka Reeves and GIVE them M.E. I tell you that i have dreams of waving a magic wand and having BatMan crashing through the roof of the US capitol, RIGHT after an announcement was made that a $10 Million dollar check was going to be given to the Top rated US congressperson.

and have all these egomaniacs rushing up to the capitol Rotunda, and have Batman crash down from above with his cap unfurled and have him tap is wrists and spray out the M.E. spray and give them ALL M.E. for two or three would be SO GREAT! and to have the NIH and CDC mucky mucks get the same taste for what we go through.

As the great Dr. David Bell, or the fantastic writer, Ms. Peggy Munson, or Dr. Byron Hyde have said, "There is NOTHING else LIke this!!"

M.E. is brutal. it is fascinating. it is VICIOUS. It seems endless. it is very complicated and very simple at the same time. Imagination the WORST hangover you ever experienced. the worst mugging you can imagine. the worst seasickness you ever experienced. Then combine them all together. And multiply by 10! and you will get a taste of what it feels like to endure this brutal illness.

Most doctors DO not know what severe ME is, so here is a chance to find out because you might be next

Posted by Indigo Jo:

The book consists of personal stories and poetry by sufferers of ME (mostly severe ME) and their parents and carers, as well as family photos and pictures of the scenery around the sufferers’ homes (all in the UK).

Anyone familiar with the online ME scene will recognise quite a few of the names: Greg and Linda Crowhurst, Zoe Williams and her mother Pat, “Dr Speedy”, Emily Collingridge, Sophia Mirza and Jane Colby are all featured prominently.

Lynn Gilderdale’s story is not there (although she is mentioned in the dedication at the beginning there may be a reference to her in one piece) but there are quite a number of similarly, if less extreme, heartbreaking stories of young people, usually women, whose life has been dominated by this illness since their early teens or even earlier, who miss out on everything their peers do, from going to school or college to walks in the park to getting married and spend most of their time in a darkened room or looking out of the window with dark glasses on.

From the patients, there are tales of “pillars of pain” and worlds plunged into silence and darkness, ... Read more>>

Fighting the PACE trial's fiction with fiction

Posted by nmj:

I've wasted too much energy this last week being angry at the PACE 'scientists' so I'm fighting their fiction with my (autobiographical) fiction, posting chapter seventeen of my novel, which seems more pertinent than ever.

Feel free to link, but ... Read more>>

See also: PACE trial results are out: ME is caused by an oncogenic virus

Any doctor who prescribes CBT and GET for ME could be sued as advised by the PACE trial

Readers' comments by Jen Wilson 18-Feb-2011 3:13 pm:

The PACE trial,by selecting its participants according to the Oxford criteria effectively excluded all those who have neuro-immune ME.It could be said to be fraudulent to extrapolate the slightly positive results based on idopathic chronic fatigue patients and apply them to those who are suffering from the devastating possibly infectious retroviral-associated neurological disease.

The motives of the researchers, who have chosen to ignore the 4 000 research papers, including those by the Drs Light, which graphically proved that exercise triggered a cascade of debilitating inflammatory responses, must be questioned and maybe their affiliations with the insurance industry and the DWP may have influenced the design of the study.

Large-scale studies undertaken by the patient associations have proven that the training regimes promoted by the PACE trial cause a high proportion of strictly-defined M.E. patients to relapse, often for years. The tragic cases of Lyn Gilderdale and Sophia Miraz, both of whom were made severely ill by this treatment approach, are prime examples of the dangers of the proposed regime. Both girls died and autopsies revealed that they had inflammation of the spinal cord.

Given the potential harmful effects of GET members of the medical profession who implement this approach might be subject to accusations of medical malfeasance.

The most appropriate approach to coping with the illness and maximising activity is 'pacing', which is quite different to that purported to be of little use by the trial, which was a modified form of GET.

Please support ME patients to maximise their capabilities and do not implement a training programme designed for those with idiopathetic fatigue on those who have the devastating disease M.E.

Guardian Journalist wants to sit in on your ESA Medical, Can you help?


Amelia Gentleman wrote a wonderful article in the Guardian on 23rd Feb about the governments attempts to get rid of disability benefits, this journalist has been the recipient of a “ Amnesty International Press Award” and rather amusingly is married to ” Boris Johnson’s ” younger brother Jo Johnson who is a conservative politician, don’t hold this against her.

She is looking for people who are willing to allow her to go along to a ESA assessment, I for one think this is a good idea as it would open up the assessment to outside eyes, I’m sure the DWP will have something to say about this If you tell them a journalist is going to accompany you but I seriously believe it would help rather than hinder your case.

If you wish to contact her then please email her directly -

I would just like to add that ... Read more>>

Hot chick with nice pussy

New from Prof CBT: The chick who slept with a running hair dryer

By Daily Mail Reporter:

Imagine not being able to sleep unless your hair-dryer was in bed with you.

Or having an addiction to eating not chocolate or cheese, but toilet paper.

As bizarre as it seems, this is the case for some people who are being highlighted in new American reality TV series, My Strange Addiction. Read more>>

Doctors and researchers who are willing to engage ME/CFS should read this book

CFS Patient Advocate:

In the general give and take of the struggle for recognition of ME/CFS, these severely ill patients are forgotten, or left behind in their frozen silence, in their darkened room.

They have no voice, doctors don't (or can't) see them, and consequently very few people - providers, doctors like de Meirlier (Are there doctors "like" de Meirleir?) - know and have seen their story. Obviously these patients do not show up at conferences or in doctor's offices. They do show up in Emergency rooms, where they are destroyed by the ignorant, crass doctors and nurses.

In the meantime these patients are mute, and on their own - in the most primitive of medical circumstances.

A few individuals have made an attempt to engage this "removal from life" - to "take a look". The most successful is Natalie Boulton who compiled, edited and designed the book "Lost Voices, from a hidden illness" published in 2008 by InvestinME, (the second edition published in 2010). (I have written about this truly outstanding InvestinME organization here and elsewhere on my blog.)

This frightening and uplifting book is everything you want to know and more. It has ... Read more>>

CBT for ME explained: We live in a world of self-interest and greed

CFS Patient Advocate:

Each year I give this doctor a compressed version of my daughter's condition (The doctor has daughters too.). This doctor, who is deeply empathetic, listens and says, "I don't know how you can do what you are doing".

In regards to viruses and illness he says, "Viruses are frightening". In reaction to my explanation about the current battles over research into XMRV and CFS, the doctor says, "We live in a world of self-interest and greed".

The doctor makes sure to shake my hand on leaving. It is not surprising that I like this doctor. This doctor is one in a million. Read more>>

Viruses are frightening

CFS Patient Advocate:

Each year I give this doctor a compressed version of my daughter's condition (The doctor has daughters too.). This doctor, who is deeply empathetic, listens and says, "I don't know how you can do what you are doing".

In regards to viruses and illness he says, "Viruses are frightening". In reaction to my explanation about the current battles over research into XMRV and CFS, the doctor says, "We live in a world of self-interest and greed".

The doctor makes sure to shake my hand on leaving. It is not surprising that I like this doctor. This doctor is one in a million. Read more>>

DO not let the shitheads get the upper hand again

CFS Patient Advocate:

One thing is certain. Dynamic research into ME/CFS is going to have to go ahead on its own. Means are going to have to be developed to privately finance research. (This is not the only disease with this problem.)

No one is going to come to the rescue. The illusion that the government is going to help has been rolled up in a little ball and thrown in the cheap tin trash basket. Concerted, driven, focused research is the only way out of this illness.

There is no other way - and now is the time to take advantage of the positive momentum.

If the shitheads get the upper hand again, it will be another 5o years until another opportunity arises. Read more>>

Bilingualism good for the brain

The skill helps improve multitasking and prioritizing, and helps ward off early symptoms of Alzheimer's disease, experts say.

By Amina Khan, Los Angeles Times, February 26, 2011:

Does being bilingual give young children a mental edge, or does it delay their learning?

It depends on who you ask.

Bilingual education is regarded by some in education policy circles as little more than a half-baked technique of teaching students whose native language is not English. Though it takes many forms, bilingual education programs usually involve teaching students in both their native languages and in English. How much each language is used, and in which academic contexts, varies by program.

But neuroscience researchers are increasingly coming to a consensus that bilingualism has many positive consequences for the brain. Several such researchers traveled to this month's annual meeting of the American Assn. for the Advancement of Science in Washington, D.C., to present their findings. Among them:

• Bilingual children are more effective at multi-tasking.

• Adults who speak more than one language do a better job prioritizing information in potentially confusing situations.

• Being bilingual helps ward off early symptoms of Alzheimer's disease in the elderly. Read more>>

Saturday, February 26, 2011

No negative study has cultured XMRV (for 45 days)

Andrew S. Wiecek, 02/23/2011:

As for her XMRV work, Mikovits says that researchers have focused on her PCR technique because it is the easiest element to replicate. “A lot of the negative studies assume that in this age of molecular technology, there’s not a detection limit for PCR,” she says. “We could detect one copy in one milliliter of blood. But there is a limit of detection to PCR.”

When she was studying HIV latency monocytes in the 1980s, biologists did not rely upon molecular-based detection methods in virology. They relied on culturing—which, for a retrovirus, is a complicated task even for expert biologists. “The first paper on the isolation of HIV was in 1982,” says Mikovits. “We didn’t have a single-copy assay of HIV by PCR until 1991.”

It’s only been about a year since XMRV arrived on the scene, and Mikovits argues that since opposing studies focused only on plasma and did not culture the virus, there could be discrepancies. “If you simply look for proviral DNA and look for very low–copy number virus, you have to make the cells divide.”

“Some of these newer technologies are just not cutting it. You have to go back to culturing the virus,” says Pfost. ““It’s hard to find the needle in the haystack if you’re not looking in a big enough haystack.” To this end, since the 2009 Science paper, Mikovits has traveled around the world to teach other labs how to culture and detect the virus with positive results.

“No one to my knowledge has cultured the virus,” she says. Read more>>

Contamination controversy is nothing new to Dr Mikovits

Andrew S. Wiecek, 02/23/2011:

Contamination controversy is nothing new to Mikovits. Her doctorate thesis posited that HIV latency monocytes could become active and infect T cells.

Researchers argued that Mikovits contaminated the nucleus with cytoplasm or forgot about important sample preparation steps.

“I got a lot of criticism from my Ph.D.,” says Mikovits. “It turned out that they were not contaminated, and monocytes could be infected by HIV.” Read more>>

Nested PCR easily overlooks XMRV

Andrew S. Wiecek, 02/23/2011:

According to the WPI group, nested PCR of cultured samples provided the best results for XMRV detection. Capable of amplifying single molecules within a large sample, it is used when targeted DNA templates are in extremely low concentrations. So-called for the way it “nests” two runs using two sets of primers, the product of the first PCR run becomes a template for the second. The technique’s only limitation is the amount of template DNA in the sample.

To increase the sensitivity of their nested PCR protocol, Mikovits turned to Max Pfost, a graduate student in her lab. Pfost researched PCR optimization and began modifying the protocol’s magnesium concentrations and annealing conditions, and choose primers for increased sensitivity rather than specificity.

Mikovits allegorizes from what she calls “the HIV days,” when it was first discovered that multiple low–copy number HIV strains existed.

“If you are looking for a low–copy number family member, you really have to optimize the magnesium and base everything on the annealing temperatures." Otherwise, she says, researchers using nested PCR would very likely overlook XMRV in their samples.

“A lot of people are just not taking the time to optimize their PCR,” says Pfost. Read more>>

XMRV may explain why cancer and neurological diseases have been on the rise in young people

Andrew S. Wiecek, 02/23/2011:

Judy Mikovits, a researcher at the Whittemore Peterson Institute for Neuro-Immune Disease (WPI) in Reno, NV, believes that XMRV may explain why a number of cancers and neurological diseases—not only prostate cancer and CFS, but also lymphoma, breast cancer, and prostate cancer—have been on the rise in young populations over recent decades.

“It’s scary how many young people under 30 get cancer,” says Mikovits. “It could be environmental, and, of course, the virus would be an environmental agent.” Read more>>

Changing ideas about epilepsy

In addition to health issues such as the experience of chronic pain, conceptions of particular diseases and disabilities also change based on time and place. Epilepsy is one of the clearest examples of how cultural beliefs can influence people’s views of certain conditions. In ancient Greece, epilepsy was often referred to as the ‘sacred disease’, since many people believed that supernatural influences caused an epileptic’s seizures. Several writers suggested that the condition was a punishment for sin and could be contagious, and as a result sufferers of epilepsy often found themselves subjects of public scorn.

Similarly, in traditional Hmong culture, epilepsy has long been viewed as a form of spiritual possession (the Hmong are an ethnic group originally from southern China). The spirit involved, known as a dab, temporarily traps a person’s soul and makes him or her sick with seizures and pains. Though the Hmong believe the spirit to be malevolent, they also view the condition as special, since it allows the sufferer a closer connection with the spiritual world. As a result, many epileptics in the Hmong culture have become shamans, which are like priests, and have enjoyed a high level of respect from the society in which they live. Read more>>

Did the Lightning Process cure your ME, then you didn't have ME in the first place

Letter by M:

"Dear Patrick, regarding the article that appeared in The Times titled "ME: Lightning cure or flash in the pan?" it is disgraceful that you are publicising the Lightning Process, when all other evidence is completely at odds to your personal views.

It is ironic that you have previously written award winning articles showing that claims by psychologists that they could cure homosexuals of their sexual preference are nonsense. How would you feel if people started reporting testimonials in the main stream media that they were "cured" of homosexuality by the Lightning Prcoess after just one day? With statements such as "I know it to be the truth it happened to me, they saved my life." Is there any more evidence for that repugnant suggestion than the equally repugnant claim that it is a cure for the terrible neurological illness known as ME? The LP is nothing more than standing on pieces of paper and saying STOP, do you really think that there is any support for the absurd claims that it can change bodily functions? And if they really could, surely it could also change a persons sexuality! As you tell us in your article, the power of the mind is very great.

The true story is that there is no scientific proof behind the claims, that therefore they are criminally illegal under the law. There are always believers, but belief does not make it true. It is a shame that an award winning journalist has been taken in by such a scheme. You report that after doing such nonsense you were cured... in one day. Yet if you had actually read the PACE trial, a controlled medical trial, that included CBT, not one ME patient was cured after doing the same kind of thing for over a year. (CBT comprises the very same STOP technique that is mis-sold as a new invention under the Lightning Process.)

One wonders how Phil Parker has managed miraculous cures that have eluded psychiatrists using the exact same treatment.

In fact in the CBT group 52% of patients reported feeling the same or slightly worse, and 6% reported feeling much worse. Overall, in the groups that excluded patients with depression - the London ME group, physical functioning improved less than 5% over baseline SMC. (Lancet.) That is not an effective treatment at all. Furthermore post-exertional malaise was only reported by just 63% of the control group at follow up, therefore 37% of patients cannot possibly have had ME/CFS. One wonders if you as against real science as the psychiatrists that have damaged so many people with ME given your views.Objective evidence is the only real science, something that the PACE trial refused to use - actigraphy, treadmill tests, cytokine profiles, hours actually worked - instead adopting questionaires and subjective nonsense.

Additionally your piece is full of serious errors and false statements. Phil Parker is not an osteopath, he is no longer registered as his claims of cures are illegal under British Ostepahthic Association rules. The PACE trial did not report any cures, or indeed significant improvement. The mean benefits were less than 5% in physical functioning in the London ME group. The rate of depression in the PACE trial was so high that the only conclusion that can be reached is that those with depression felt moderately better on CBT and GET. This of course we know, CBT and GET are proven treatments for depression. Lastly, Emily Rantzen has now reported that she was "faking" her recovery in 2006 and that she actually "feels infinitely better" now she has discovered she has coeliac disease and not ME. I really hope your previous articles were not as highly flawed as this one.

I’m sorry you were ill, and equally sorry that you believe that you were made well by such an unsubstantiated scam such as the LP. But to publicise your story is an utter disgrace as it gives support to something that is completely unproven, and indeed proven false by medical trials and medical evidence. Just because you "feel" you have been cured by this scam does not give you the right to claim that you have as that is to the detriment of many thousands of sick and very vulnerable people."

My PS: Please remember that anybody who claims to be cured by the Lightning Process, either was spontaneously cured or more likely didn't have ME in the first place.

A massive organised psychiatric conspiracy

Mail & Guardian Online, Feb 26 2011:

Simpson said he does not assume XMRV is the cause of the illness, but he and many others are deeply suspicious of what they believe are the attempts of scientists to dismiss once more the claims of ME/CFS to be considered a biomedical condition.

They pointed out that it was classified as a neurological disease rather than a psychological illness by the World Health Organisation in 1969.

Listen to some -- or read the internet -- and you would think there is a massive organised conspiracy going on, led by the psychiatric community, but in conjunction with insurance companies and even government, to prove ME has no physical cause.

(There are genuinely distressing stories about the failure of the UK department for work and pensions to recognise that people with ME/CFS can be incapable of work, depriving them of sickness benefits.) Read more>>

Bedridden and tube-fed and no treatments available other than silly psychobabble

Mail & Guardian Online, Feb 26 2011:

Kay Gilderdale helped her 31-year-old daughter to kill herself over the course of one long December night, crushing up sleeping pills and antidepressants when the morphine overdose she gave her to inject did not immediately work.

It’s almost incredible to think that a mother and daughter could be driven to such hellish extremes by a disease that is not fatal. Lynn Gilderdale had ME. But Lynn’s extraordinary and distressing story takes few people acquainted with ME (myalgic encephalopathy), also known as CFS (chronic fatigue syndrome), by surprise. If nothing else, it illustrates the despair that ME/CFS engenders.

An estimated 250 000 people have the condition in the United Kingdom, of whom 25 000 are children (Lynn became ill at 14). Most struggle to get a diagnosis, many are unhappy with the limited treatments available and all want to know what has caused them to be afflicted with this most miserable of illnesses, which saps their energy, wrecks their lives and leaves some like Lynn bedridden and tube-fed. Read more>>

There is no one in the UK who is tackling this problem

Mail & Guardian Online, Feb 26 2011:

Whatever the final conclusion about XMRV, everybody hopes that the episode will generate more scientific research. But Simpson talked for the frustrated majority when he described the case of one child on tube-feeding, whose consultant said she must have CBT and should be back in school within a week, and asked: “Why isn’t science playing a part in trying to resolve this?”

He himself has two daughters with ME/CFS. It is not hard to imagine how tough that must be. “At the end of the day it is about people’s health,” he said. “My daughters are ill because of this. I can’t see anyone in this country who is tackling the problem.”

Mr Towers, XMRV class viruses DO integrate into the same sites repeatedly

Full picture can be seen here ...

Gerwyn Morris, (26 February 2011) PA institute:

The authors are clearly not familiar with MLV viruses

MLV viruses have a preference for integrating within certain genes involved in the promotion or repression of tumours. A classic example would be PIM-1(1) or P53 (2) n-myc(3)is also a common integration site.
Thus mulv virus' display the propery of integrating into the same sites repeatedly.It is surprising that the authors have not researched into the subject. Hence the following section of the paper is completely incorrect

"With the exception of a single early publication on avian
sarcoma-leukosis virus, which was refuted by later work [10], sequencing studies of
thousands of retroviral integration sites have to our knowledge never identified exactly the
same site twice."

The following table demonstrates just how inaccurate the author's comments are. They illustrate the integration sites within genes of the class of virus to which xmrv belongs


The reader will note that the activity of these genes are all related to the development of cancer in humans

The authors are stating beliefs in the guise of fact.
They state that the sequences were unlikely to have been transfered into the DU125 cells from the patients examined without nothing but their biases as evidence.

Likewise they voice their belief that the other integration sites are probably caused by contamination despite failing to provide any evidence despite a rigorous effort to discover said evidence.

The integration of a mulv class virus into the PIM-1 gene leads to the overexpression of PIM-1(1).The degree of overexpression of PIM-1 correlates with severity of prostate cancer in humans(1)

I submit that patients with prostate cancer are entitled to anyone ,purporting to be scientists, investigating the link of XMRV to their condition limit themselves to publishing scientific evidence and not speculation in the guise of scientific evidence as is,sadly,the case here


(1)Wong KS, Li YJ, Howard J, Ben-David Y. Loss of p53 in F-MuLV 14induced-erythroleukemias accelerates the acquisition of mutational events that confers immortality and growth factor independence. Oncogene. 1999 Sep 30;18(40):5525-34.

2)Cuypers HT, Selten G, Quint W, Zijlstra M, Maandag ER, Boelens W, van Wezenbeek P, Melief C & Berns A. (1984) Cell 37: 141–150.

(3)van Lohuizen M, Verbeek S, Scheijen B, Wientjens E, van der Gulden H & Berns A. (1991) Cell 65: 737–752

Competing interests


Greg Towers proposes again that XMRV is contamination, so he is not sure ...

Jeremy A Garson , Paul Kellam and Greg J Towers:

Retrovirology 2011, 8:13doi:10.1186/1742-4690-8-13

Published: 25 February 2011
Abstract (provisional)

XMRV is a gammaretrovirus associated in some studies with human prostate cancer and chronic fatigue syndrome. Central to the hypothesis of XMRV as a human pathogen is the description of integration sites in DNA from prostate tumour tissues. Here we demonstrate that 2 of 14 patient-derived sites are identical to sites cloned in the same laboratory from experimentally infected DU145 cells. Identical integration sites have never previously been described in any retrovirus infection.

We propose that the patient-derived sites are the result of PCR contamination. This observation further undermines the notion that XMRV is a genuine human pathogen.

My Note: "We propose that the patient-derived sites are the result of PCR contamination." Means that they are not sure ...

See also: Mr Towers, XMRV class viruses do integrate into the same sites repeatedly by Gerwyn Morris, (26 February 2011) PA institute

Münchausen by internet: Faking illness online

Jenny Kleeman, The Guardian, Saturday 26 February 2011:

Anyone following her updates online could see that Mandy Wilson had been having a terrible few years.

She was diagnosed with leukaemia at 37, shortly after her husband abandoned her to bring up their five-year-old daughter and baby son on her own.

Chemotherapy damaged her immune system, liver and heart so badly she eventually had a stroke and went into a coma.

She spent weeks recovering in intensive care where nurses treated her roughly, leaving her covered in bruises.

Mandy was frightened and vulnerable, but she wasn't alone. As she suffered at home in Australia, women offered their support throughout America, Britain, New Zealand and Canada. She'd been posting on a website called Connected Moms, a paid online community for mothers, and its members were following every detail of her progress – through updates posted by Mandy herself, and also by Gemma, Sophie, Pete and Janet, Mandy's real-life friends, who'd pass on news whenever she was too weak. The virtual community rallied round through three painful years of surgeries, seizures and life-threatening infections.

Until March this year, when one of them discovered Mandy wasn't sick at all. Gemma, Sophie, Pete and Janet had never existed. Mandy had made up the whole story. Read more>>

Millions of mentally disabled people are hidden away, locked up and forgotten

Editor's note: Across Kenya, millions of mentally disabled people are hidden away: locked up and forgotten, often by families who can't get them proper treatment.

By David McKenzie and Ingrid Formanek, CNN, February 25, 2011:

Nairobi, Kenya (CNN) -- The tin shack looks like any other in a patch of small plots on the dusty outskirts of Nairobi. It's the haunting sound that grabs you, the awful moaning and cries coming from within.

It's Thomas Matoke's home. But it's more like a cell. Matoke, 33, is tied to a steel bedframe with a piece of blue rope. He's surrounded by pools of his urine, his mattress soiled and ripped to shreds.

His moans are interrupted when he chews his hand or the bedframe. He can't speak to tell his mother what he wants or feels. He's alone in his world of screams and agony.

He's been like this for 30 years.

Matoke got ill when he was a toddler and lost much of his high-level functioning. So his mother ties him up to prevent him from running away or hurting himself.

Countless trips to doctors and hospitals haven't helped him. And poverty means there isn't much medical help his family can afford. Read more>>

Friday, February 25, 2011

Post-exertional malaise, the hallmark of ME/CFS, did NOT feature in the farcical PACE trials

By Charlotte von Salis,

I did ask Gill a detailed question (mainly for the audience's benefit) about the Pacific Fatigue Lab's findings with repeat exercise testing, as well as the Lights’ exercise studies in CFS patients.

Both groups of researchers found objective, measurable and significantly abnormal biomarkers that distinguished the sick from the healthy controls after exercise.

Their findings allowed me to bring up post-exertional malaise as the hallmark of CCC-defined patients.

Gill replied that he disagreed with those studies but didn’t explain why. Read more>>

Dr Alter: Demystifying (ME/CFS and XMRV) medicine

Dr Alter's presentation.

Is Dr. Fred Gill aka Dr psychoneurotic the American Simon Wessely ?

By Charlotte von Salis,

Dog day afternoon at the NIH as Dr. Fred Gill, who hails from the psychoneurotic school of CFS, questions whether CFS is even a disease.

He’s pitted against Dr. Harvey Alter and Dr. Shyh-Ching Lo, who believe in science. Read more>>

Not tonight, honey. I have a headache, when men don’t want sex

Ian Kerner, a sexuality counselor and New York Times best-selling author, blogs about sex:

“Not tonight, honey. I have a headache.” How many times has a guy heard that before? Husbands around the world are all too familiar with being sexually rejected. But now, more than ever, those words, (or some variation), are being expressed by men, to their female partners.

While the conventional wisdom has been that it’s usually the woman in the relationship who inevitably loses interest in sex, the opposite is often true. Low male desire is at all-time high, and is likely to occur for any number of reasons: ... Read more>>

82% of autistic children are XMRV positive

By Kent Heckenlively, Esq.:

A poster presentation entitled "Detection of Infectious XMRV in Peripheral Blood of Children" was made at the 1st International Workshop on XMRV in September of 2010 at the National Institute of Health in Bethesda, Maryland.

In a small sample it was found that 14 of 17 children (82%) of the children were positive for XMRV infection. Read more>>

Immunization Provokes XMRV Activation in Monkeys

By Kent Heckenlively, Esq.:

A new study from scientists at Emory University, the Cleveland Clinic, Yerkes National Primate Research Center, and Abbott Diagnositics and featuring such medical luminaries as Drs. Eric Klein and Robert Silverman is providing information on the path of XMRV infection in primates, and surprisingly the possible triggers for activation of the retrovirus. The work was recently published in the Journal of Virology.

I have a long-standing interest in XMRV (xenotropic murine leukemia-related virus) as my daughter with autism/seizures and my wife have both tested positive for the retrovirus. I have tested negative. While most of the recent commentary on XMRV has focused on its possible connection to chronic fatigue syndrome/ME, children with autism share many common clinical symptoms with the CFS/ME population, including immune disregulation, increased oxidative stress, expression of proinflammatory cytokines, low natural killer cell functionality, and active microbial infections.

A poster presentation entitled "Detection of Infectious XMRV in Peripheral Blood of Children" was made at the 1st International Workshop on XMRV in September of 2010 at the National Institute of Health in Bethesda, Maryland.

In a small sample it was found that 14 of 17 children (82%) of the children were positive for XMRV infection.

I was also intrigued to see that in the new book, The Myth of Autism by Dr. Michael Goldberg he marshalls abundant evidence of the commonalities between these two conditions, as well as receiving critical praise for his work from Dr. Nancy Klimas, one of the world's best known (and apparently beloved) experts on chronic fatigue syndrome/ME.

From the abstract of the study entitled, Infection, Viral Dissemination and antibody Response of Rhesus Macaques Exposed to the Human Gammaretrovirus XMRV, the authors explained, ... Read more>>

Not exactly medical journalism

Posted on 13th February, 2011 by Indigo Jo:

I’ve said this before, and I’ll say it again: I don’t think this programme did the subject justice. Admittedly, there is only so much you can fit into a documentary running to just under 30 minutes, which is the BBC’s fault, not the producers’, but it was a bit short on medical details which might have given the reader a clearer picture as to why Lynn Gilderdale got to the point where she felt she had to take her own life.

Some of Lynn’s complications were mentioned, as well as the fact that she was in pain (hence the morphine), but there was no reference to the recurrent medical disasters (such as the incident in 2005 where her lung was punctured and an artery nicked, causing serious internal bleeding and leaving her on life support, during a routine operation to replace a Hickman line, which as Lynn reported herself, was allowed to get that bad because the doctor would not listen when she said she could not breathe properly and was in pain) or to the abusive treatment she had received as an in-patient in 1992, which left her with a lifelong fear of doctors and hospitals.

Nor did it mention how ME itself affects people, other than by causing them pain; the complications that were mentioned in Lynn, such as adrenal and ovarian failure, are unusual. Read more>>

CBSNews: Disease specific proteins found in spinal fluid of ME/CFS

CBSNews: Researchers have found protein indicators that could be a result of Chronic Fatigue Syndrome, a disease often dismissed by some medical professionals. Michelle Miller reports on the promising study.

Panorama film about Lynn Gilderdale wins Medical award, Tuesday 15th February 2011:

YEOVIL-BASED media company GRACE Productions has won the prestigious Broadcast TV prize at the Medical Journalists’ Association Winter Awards 2011, for a documentary the company made for BBC Panorama.

GRACE’s film, I Helped My Daughter Die, was first broadcast on the BBC’s flagship current affairs series last year.

Presented by Jeremy Vine, the programme followed the tragic story of Lynn Gilderdale - chronically-ill with ME for 17 years - who took her own life in an assisted suicide. Her mother Kay Gilderdale was later charged with attempted murder.

GRACE’s production team, led by director Ray Tostevin, spent nearly a year following Mrs Gilderdale as she prepared for trial.

GRACE’s Panorama film went out at the conclusion of the trial, in which Kay Gilderdale was found not guilty of the attempted murder of her daughter. The case was a legal landmark, and made headlines around the world.

The MJA judges praised GRACE’s film for “well-chosen contributors and a great story which was sensitively followed over a long time.”

The ME community is not so terribly stunned by the BOGUS PACE Trial

Lilpink, says...
9:58am Fri 25 Feb 11:

The ME community is not so terribly stunned at the results of the PACE Trial. They had been decided upon even before the trial had begun. A complaint about almost every aspect of the trial was made to the MRC by Professor Hooper and can be seen here:

Since the publication of the Trial last week we have had yet another piece of biomedical research from the US to (yet again) illustrate the organic, physical nature of this illness:

I wonder how many more biomedical research papers it will take to stop the UK treating this illness as a mental illness and manipulating 'research' to push it's behavioural 'therapies' on a vulnerable population?

Peter Spencer's remarks are more than disingenuous as he represents one of only two charities who did not call for the PACE Trial to be abandoned whilst it was still in the planning stage. Had AfME removed their endorsement this waste of £5 million may not have happened and we would not have to run the gauntlet of atricles which suggest that people with this disease just need a bit of exercise and mind training!

See also: PACE trial results are out: ME is caused by an oncogenic virus or Invest in ME: PACE trials are bogus science

Should the CBT psychiatrists be jailed for child abuse ?

Justin Reilly, esq. 2011-01-30 05:10:

It's disgusting this is still going on in pediatric ME, much less increasing.

I am a lawyer and have represented a child with ME in similar court battles and it's shameful what they do to these very sick kids and their parents.

Simon Wessely, Petter White and their co-conspirators should be jailed for child abuse! The UK and Scottish govts should be ashamed!

Thursday, February 24, 2011

When CBT fanatico's get ME they run away from silly CBT as fast as possible !!

Anonymous said...:

"I hope for the British and the Dutch Pinocchio specialists, that none of them, nor any of their friends and relatives, will ever get ME"

As a matter of fact: they do get ME and run away from CBT as fast as possible!

Here a link to the website of a Dutch ME patients association:

The article tells about a CBT therapist Karel van Riet, who was once a student from Prof. Bleijenberg (author of the Lancet publication: Prins, Bleijenberg et. al. 2001) who runs the 'famous' CBT "knowledge Centre of CFS" in the Netherlands.

Mr. van Riet became seriously ill with ME about 10 years ago and had to quit his job as a CBT therapist.

The writer of the article asked him: "So, as a therapist you must have been cured in less than no time?".

Mr.van Riet admitted this was not the case and told the journalist he had to go to the international well known ME-specialist Prof. Meirleir in Brussels, Belgium (and opponent of the CBT treatment) to get himself a proper treatment.

Even than he stayed seriously ill for many years and only recently started working again as a therapist.

These CBT docters/therapists can act strangely when becoming ill themselves!!


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