The Psychologist News
Experts from five continents have agreed upon on a new set of 'International Consensus Criteria' for myalgic encephalomyelitis (ME; also referred to as chronic fatigue syndrome or CFS), which they hope will improve clinical diagnosis and research into the condition.
Writing in the Journal of Internal Medicine in July (tinyurl.com/44tvs6v), the 25 co-authors said: 'The primary goal of this consensus report is to establish a more selective set of clinical criteria that would identify patients who have neuroimmune exhaustion with a pathological low-threshold of fatigability and symptom flare in response to exertion. This will enable like patients to be diagnosed and enrolled in research studies internationally under a case definition that is acceptable to physicians and researchers around the world.'
The new criteria are the latest in a series of attempts to nail down the hallmarks of ME/CFS. For example, last year saw a revision to narrow down the Canadian Case Definition, originally published in 2003, which has proved popular with many researchers. Bruce Carruthers, a psychiatrist in private practice in Vancouver, who was lead author on those 2003 criteria is also co-editor of the new International Consensus Criteria.
A key departure from its forerunners by the new International Criteria is that symptoms and signs need not have been present for six months before a diagnosis can be made. 'No other disease criteria require that diagnoses be withheld until after the patient has suffered with the affliction for six months,' the authors said.
However, the cardinal symptom remains 'Post-Exertional Neuroimmune Exhaustion' - a profound loss of energy following exertion, and impaired recovery. Also, the patient must have at least one symptom in each of the following categories: neurocognitive impairments (e.g. pain); immune, gastro-intestinal and genito-urinary impairments (e.g. food sensitivities); and energy production/ transportation impairments (e.g. laboured breathing).
The new criteria also urge that the CFS label be dropped. 'Using "fatigue" as a name of a disease gives it exclusive emphasis and has been the most confusing and misused criterion,' argue Carruthers and his colleagues. 'Fatigue in other conditions is usually proportional to effort or duration with a quick recovery, and will recur to the same extent with the same effort or duration that same or next day. 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
Wednesday, August 31, 2011
Wednesday, March 30, 2011
Life Is Tough but Freedom Is Possible | Psychology Today
Life Is Tough but Freedom Is Possible | Psychology Today
Life is tough. We're all subject to suffering, stress, anguish, and dissatisfaction. This is the essence of the Buddha's first noble truth. Given life's uncertainty and unpredictability, how could it be otherwise?
When I first encountered this teaching (many years before I became chronically ill), I didn't feel disheartened; I felt relieved. Finally, someone was describing this life in a way that fit a good portion of my experience. What a relief to know it wasn't just me or just my life! Do you know a single person, healthy or sick, who has not experienced suffering, stress, anguish, and dissatisfaction in his or her life?
Life is tough. We're all subject to suffering, stress, anguish, and dissatisfaction. This is the essence of the Buddha's first noble truth. Given life's uncertainty and unpredictability, how could it be otherwise?
When I first encountered this teaching (many years before I became chronically ill), I didn't feel disheartened; I felt relieved. Finally, someone was describing this life in a way that fit a good portion of my experience. What a relief to know it wasn't just me or just my life! Do you know a single person, healthy or sick, who has not experienced suffering, stress, anguish, and dissatisfaction in his or her life?
Monday, March 21, 2011
timesofmalta.com - Allies pound Libya
timesofmalta.com - Allies pound Libya
US tomahawk cruise missiles hit Libya late yesterday, the Pentagon said.
Washington has F-15 and F-16 fighter jets in Sicily, while the USS Barry and the USS Stout, both destroyers equipped with sea-to-ground Tomahawk missiles, are in the Mediterranean.
The USS Bataan, a helicopter-carrying amphibious assault ship, and two other vessels have also been deployed to relieve the USS Kearsarge and the transport docking ship USS Ponce in the Mediterranean. The Bataan was due to leave the state of Virginia last Wednesday.
The US also has three submarines in the Mediterranean capable of firing Tomahawk missiles.
US tomahawk cruise missiles hit Libya late yesterday, the Pentagon said.
Washington has F-15 and F-16 fighter jets in Sicily, while the USS Barry and the USS Stout, both destroyers equipped with sea-to-ground Tomahawk missiles, are in the Mediterranean.
The USS Bataan, a helicopter-carrying amphibious assault ship, and two other vessels have also been deployed to relieve the USS Kearsarge and the transport docking ship USS Ponce in the Mediterranean. The Bataan was due to leave the state of Virginia last Wednesday.
The US also has three submarines in the Mediterranean capable of firing Tomahawk missiles.
Monday, March 07, 2011
The Puzzle of Chronic Fatigue Syndrome - WSJ.com
The Puzzle of Chronic Fatigue Syndrome - WSJ.com
The Puzzle of Chronic Fatigue
For 20 years, a doctor in upstate New York has been trying to prove that an outbreak of the strange syndrome in his community was caused by a virus. Now new evidence is reopening the case..
excellent article
The Puzzle of Chronic Fatigue
For 20 years, a doctor in upstate New York has been trying to prove that an outbreak of the strange syndrome in his community was caused by a virus. Now new evidence is reopening the case..
excellent article
Thursday, March 03, 2011
Great research project
http://www.bond.edu.au/prod_ext/groups/public/@pub-burcs-gen/documents/genericwebdocument/bd3_016201.pdf
The International ME Research Collaboration (IMERC) confirms the strong and convincing scientific evidence of immune dysregulation in ME/CFS. Research will be encouraged into the blood-brain and other neural barriers, glial and neural cell histopathology, and neurotransmitter function including recently discovered neuropeptide function.
IMERC identified key priorities:
• The name myalgic encephalomyelitis ME would be adopted to better reflect the science and seriousness of the clinical picture in preference to the misleading label of chronic fatigue syndrome CFS.
The International ME Research Collaboration (IMERC) confirms the strong and convincing scientific evidence of immune dysregulation in ME/CFS. Research will be encouraged into the blood-brain and other neural barriers, glial and neural cell histopathology, and neurotransmitter function including recently discovered neuropeptide function.
IMERC identified key priorities:
• The name myalgic encephalomyelitis ME would be adopted to better reflect the science and seriousness of the clinical picture in preference to the misleading label of chronic fatigue syndrome CFS.
Wednesday, March 02, 2011
John Falk: Chronic Fatigue Syndrome and Psychotherapy
John Falk: Chronic Fatigue Syndrome and Psychotherapy
Until now, I've told no one except a small inner-circle of family that my mysterious breakdown in health, vitality, and cognition that started the night of May 5, 2007 was not due to an exotic virus I picked up in the Congo while on assignment for National Geographic. The truth? I'm actually a textbook case of someone with CFS, a syndrome I sniffed at until it happened to me. For the sufferer CFS means a total health breakdown, like a plane that inexplicably begins tearing itself apart mid-flight. Together, all the various dysfunctions associated with it leave the patient in a state of health more debilitating than chronic obstructive pulmonary disease, heart disease, or multiple sclerosis.
There is no known cause for CFS, and most terrifying from where I sit, no cure.
I've now decided to come out of the closest -- so to speak -- because it's ultimately self-defeating living a lie. Plus, someone has to start owning this syndrome in public. The more people who fess up to having it -- and there are many more who have it than let on -- the better off we all will be in the end.
When you have CFS one of the greatest battles you fight are the ignorant smirks and expressed disbelief of those who think it's all in your head; that is, those that don't live with you and live the truth of CFS everyday. Negativity and doubt amount to an energy drain you can ill afford. It's the reason I have refused up until now to identify myself as a person with CFS.
That which medicine can't explain we tend to label psychosomatic and blame the patient, a cruel phenomenon all too familiar to those who've had MS, rheumatoid arthritis, and lupus, and a myriad of other ailments in decades past.
Until now, I've told no one except a small inner-circle of family that my mysterious breakdown in health, vitality, and cognition that started the night of May 5, 2007 was not due to an exotic virus I picked up in the Congo while on assignment for National Geographic. The truth? I'm actually a textbook case of someone with CFS, a syndrome I sniffed at until it happened to me. For the sufferer CFS means a total health breakdown, like a plane that inexplicably begins tearing itself apart mid-flight. Together, all the various dysfunctions associated with it leave the patient in a state of health more debilitating than chronic obstructive pulmonary disease, heart disease, or multiple sclerosis.
There is no known cause for CFS, and most terrifying from where I sit, no cure.
I've now decided to come out of the closest -- so to speak -- because it's ultimately self-defeating living a lie. Plus, someone has to start owning this syndrome in public. The more people who fess up to having it -- and there are many more who have it than let on -- the better off we all will be in the end.
When you have CFS one of the greatest battles you fight are the ignorant smirks and expressed disbelief of those who think it's all in your head; that is, those that don't live with you and live the truth of CFS everyday. Negativity and doubt amount to an energy drain you can ill afford. It's the reason I have refused up until now to identify myself as a person with CFS.
That which medicine can't explain we tend to label psychosomatic and blame the patient, a cruel phenomenon all too familiar to those who've had MS, rheumatoid arthritis, and lupus, and a myriad of other ailments in decades past.
Thursday, February 24, 2011
Sunday, February 20, 2011
ME CFS XMRV Expert Dr Paul Cheney - Hits Back on 'GET' Graded Exercise t...
Finally a voice of reason
Friday, February 18, 2011
Professor Hooper’s Response to the MRC PACE Trial Press Release
Professor Hooper’s Response to the MRC PACE Trial Press Release
Professor Hooper’s Initial Response to the MRC PACE Trial Press Release hosted by The Lancet
17th February 2011
1. The MRC PACE Trial used the Oxford criteria which do not define patients with ME/CFS. If used correctly, they exclude people with neurological disorders yet ME is a classified neurological disorder (WHO ICD-10 G93.3). The Trial’s “operationalised Oxford research diagnostic criteria for CFS” (Trial Protocol version 5, 2006, Section 7.2) were partly financed by the Chief Principal Investigator’s (Professor Peter White) own money (JRSM 1991:84:118-121). Professor White’s American peers have pointed out that the UK estimates (that are based on the Oxford criteria) are likely to include a high percentage of patients with psychiatric morbidity (“It is at least possible that the 2.54% to 2.6% rates in both the United States and Great Britain are due to a broadening of the case definition and possible inclusion of cases with primary psychiatric conditions. Some CFS investigators would not see this as a confounding problem because they believe that high rates of psychiatric comorbidity indicate that CFS is mainly a psychiatric disorder….Most importantly, the erroneous inclusion of people with primary psychiatric conditions in CFS samples will have detrimental consequences for both the interpretation of both epidemiological and treatment efficacy findings” (Professor Leonard Jason: Problems with the New CDC CFS Prevalence Estimates: IACFS/ME: 2007; Professor Leonard Jason: How Science can stigmatise: the case of Chronic Fatigue Syndrome. JCFS 2007:14:85-103). A Canadian psychiatrist who specialises in ME/CFS, Dr Ellie Stein, said on 25th May 2007 at the ME Research UK International Research Conference held at the Edinburgh Conference Centre, Heriot Watt University, that the Oxford criteria “could describe almost anybody. I do not believe that studies which use the Oxford criteria can be generalised to patients which most of us in this room would consider to have ME/CFS”. Indeed, on 14th July 2006 Professor White sought Ethics Committee approval to advertise his PACE Trial to GPs, asking them to refer anyone “whose main complaint is fatigue (or a synonym)”. The MRC PACE Trial entry criteria had an “open door” policy and did not identify people with ME/CFS (those supposedly under study in the PACE Trial), hence the reported results cannot be claimed to refer to ME/CFS patients.
2. The MRC PACE Trial excluded children and those who are severely affected. The results of any trial that excluded those who are severely affected cannot be taken seriously.
3. The MRC PACE Trial used no objective measures of outcome (ie. actigraphy) to show improvement or non-improvement and relies upon participants’ subjective answers to questionnaires. This is an unscientific way to gather evidence. There can be no empirical science without objective measures – objective measures are at the heart of the scientific method.
4. Professor White has claimed that CBT and GET can cure people with ME/CFS, for example, he claims that “a full recovery is possible” (Psychother Psychosom 2007:76(3):171-176) and the participants’ CBT Manual informs people that the PACE Trial therapies are curative and that “many people have successfully overcome their CFS/ME” with such behavioural interventions (“Information for relatives, partners and friends”, page 123). Moreover, in the NHS Plus Report, for which Peter White was an external assessor but failed to reveal that he was peer-reviewing his own work (Occupational Aspects of the Management of Chronic Fatigue Syndrome, October 2006), it was claimed that CBT/GET have been shown to be effective in restoring the ability to work in those who were absent from work. However, in a Statement in 2009 for the British High Court, his American peers doubted the possibility of the 23% to 25% recovery rate that Peter White claimed he had achieved (http://www.meactionuk.org.uk/JR_Statements_-_extracts.htm). Commenting on her own recently co-authored paper on CBT (C. Lopez et al, Journal of Psychosomatic Research 2011: doi: 10.1016/j.jpsychores.2010.11.010 Epub ahead of print), Professor Nancy Klimas said on the record: “Dr White challenged me in a meeting a year ago saying nothing else had been published to deny this finding. So now you have a publication, written by a psychologist and well-regarded CBT expert to use when you want to argue that CBT helps people with this illness (as it does in every chronic disease model ever tested) but does not cure the illness” (http://networkedblogs.com/dG7pU).
5. The recent drugs industry scandal concerning Avandia has resonance for ME/CFS research. The editor of the BMJ, Fiona Godlee, concluded that pharmaceutical companies could not be trusted to generate honest research in respect of their own products and that independent scientific corroboration would always be required. The same principle should apply to non-pharmaceutical research, but the only research supporting CBT/GET has been generated by those who stand to gain most in professional and financial terms from its promotion. Similar independent corroboration should be required before experimental psychological interventions are applied nationally.
6. Professor White and his co-Principal Investigators all have financial links with the health insurance industry, a matter of grave concern to the former Chairman of a House of Commons Science and Technology Select Committee and former Dean of Biology (Dr Ian Gibson MP); a member of the Home Affairs Select Committee (Ann Cryer MP); a Minister of State for the Environment (The Rt Hon Michael Meacher MP); a former President of the Royal College of Physicians (Lord Turnberg); the Deputy Speaker of the House of Lords (the Countess of Mar), and a former Health Minister and Honorary Fellow of the Royal College of Physicians (Baroness Julia Cumberledge) (Gibson Inquiry Parliamentarians’ Report, 2006). In an obvious reference to Professor White, this Report stated: “There have been numerous cases where advisors to the DWP have also had consultancy roles in medical insurance companies, particularly the company UNUMProvident. Given the vested interest that private medical insurance companies have in ensuring CFS/ME remains classified as a psychosocial illness, there is a blatant conflictof interest here. The Group finds this to be an area for serious concern…”. In Professor White’s case, this blatant conflict of interest remains unresolved, as he is Chief Medical Officer for the insurance giant Swiss Re, and another of the PACE Trial Principal Investigators, Professor Michael Sharpe, is associated with UNUMProvident.
7. There is existing acknowledgement that there is no long-term benefit from CBT:
· Professor Simon Wessely, who directed the PACE Clinical Trial Unit, is on record stating that CBT provides no effective treatment: in his Editorial (JAMA 19th September 2001:286:11) he stated that CBT and GET are only “modestly effective” and that neither is “remotely curative”.
Wessely is also on record as stating: “It should be kept in mind that evidence from randomised trials bears no guarantee for treatment success in routine practice. In fact, many CFS patients, in specialised treatment centres and the wider world, do not benefit from these interventions” (The act of diagnosis: pros and cons of labelling chronic fatigue syndrome. Marcus JH Huibers and Simon Wessely. Psychological Medicine 2006:36: (7): 895-900).
It would surely have been better if the (more than) £5 million spent on investigating what was already known had been spent on biomedical research into this complex disorder and in helping the severely affected (for instance, by providing domestic and personal assistance) and on effective pain relief for those afflicted.
8. The Adaptive Pacing Therapy (APT) used in the PACE Trial is not the same as pacing, a common sense approach that patients find helpful. The CBT Therapists’ Manual states about APT: “Activity is therefore planned”, which indicates a structured activity regime, and the APT Therapists’ Manual lists other requirements for APT including “plan set activity in advance” (so activity must be “set activity”, not simply what the patient may be capable of doing at the time); there must be “activity analysis”; APT participants must “constantly review model, diaries and activity” and there is the requirement to “involve relatives”, which is nothing like “doing what you can when you can”. Professor White is on record as being strongly opposed to pacing: “The theoretical risk of pacing is that the patient remains trapped by their symptoms in the envelope of ill-health” (Editorial: Postgrad Med J. 2002:78:445-446), so it was unlikely that he would find pacing to be effective. This should be contrasted with his American counterparts, who promote the “energy envelope” management strategy (The impact of energy modulation on physical function and fatigue severity among patients with ME/CFS. Leonard Jason et al; Patient Educ Couns 2009:77:237-241).
9. The MRC FINE Trial (sibling of the PACE Trial) failed spectacularly. It found that “pragmatic rehabilitation” (PR, based on CBT/GET) was minimally effective in reducing fatigue and improving sleep only whilst participants were engaged in the programme and that there was no statistically significant effect at follow-up. Furthermore, pragmatic rehabilitation had no statistically significant effect on physical functioning; equally, its effect on depression had diminished at follow-up. Moreover the other intervention being tested (“supportive listening” or SL) had no effect in reducing fatigue, improving physical functioning, sleep or depression.
10. The results of the PACE Trial may mean that patients who have genuine ME as opposed to chronic “fatigue” will continue to be denied appropriate investigation and treatment; they may be deprived of State benefits necessary for survival; their insurance claims may be rejected, and they will be condemned to an even lower quality of life.
11. The results of the MRC PACE Trial were anticipated to be in favour of the interventions being studied because the Trial is but one prong of a UK Blair Government three-pronged “integrated plan” to roll out CBT and GET across the nation for those with ME/CFS (Department of Health, 2004, Statement of Information released via the Welsh Assembly Disclosure Log 2296), the other two prongs being the NICE Clinical Guideline 53 published in August 2007 and the national “Fatigue” Clinics that cost taxpayers £8.5 million to deliver an intervention known to be ineffective and to have made at least 50% of those who have undertaken it actively worse. The “integrated plan” was designed to ensure compliance, so it was never in doubt that the PACE Trial results would conform to the “integrated plan”, as indeed is the case (ie. CBT and GET are said to be safe and moderately effective treatments for everyone with ME/CFS and to be better than APT).
12. On 12th October 1996, a Lancet editorial about the Joint Royal Colleges’ Report on CFS noted that psychiatrists had monopolised the research and management of ME/CFS: “The sixteen strong committee was top heavy with psychiatric experts, so the emphasis on psychological causes and management is no surprise. Charles Shepherd, Medical Director for the ME Association, told us: ‘The committee was rigged, with dissenting voices excluded’.” Unfortunately, nothing has changed in the fifteen years since. Except apparently the Lancet editorial policy.
For a detailed analysis of the whole PACE Trial, including evidence of the in-built facility for the DWP to have unrestricted access to participants’ medical notes; the fact that participants’ data was not kept securely and was stolen but they were not informed of this; the apparent failure of the Principal Investigators to adhere to the Declaration of Helsinki; the fact that some participants were told --- against the basic rules of any clinical trial --- that the intervention they were receiving was curative; the dilution of the entry criteria after the trial had commenced (so the second and subsequent tranches of participants were less ill and thus more likely to respond favourably to the interventions); the apparent lack of clinical equipoise, and the fact that the Trial manuals describe behaviours and techniques to be used by the Trial therapists that should not --- and cannot --- be considered ethical by an independent and reasonable observer, see “Magical Medicine: how to make a disease disappear”: http://www.meactionuk.org.uk/magical-medicine.htm .
Sent on behalf of:
Malcolm Hooper Ph.D.,B.Pharm.,C.Chem.,MRIC
Emeritus Professor of Medicinal Chemistry
University of Sunderland, SUNDERLAND SR2 3SD
Home:
2, Nursery Close
SUNDERLAND
SR3 1PA
Phone 0191-5285536
email: hoopersecundus@talktalk.net
Professor Hooper’s Initial Response to the MRC PACE Trial Press Release hosted by The Lancet
17th February 2011
1. The MRC PACE Trial used the Oxford criteria which do not define patients with ME/CFS. If used correctly, they exclude people with neurological disorders yet ME is a classified neurological disorder (WHO ICD-10 G93.3). The Trial’s “operationalised Oxford research diagnostic criteria for CFS” (Trial Protocol version 5, 2006, Section 7.2) were partly financed by the Chief Principal Investigator’s (Professor Peter White) own money (JRSM 1991:84:118-121). Professor White’s American peers have pointed out that the UK estimates (that are based on the Oxford criteria) are likely to include a high percentage of patients with psychiatric morbidity (“It is at least possible that the 2.54% to 2.6% rates in both the United States and Great Britain are due to a broadening of the case definition and possible inclusion of cases with primary psychiatric conditions. Some CFS investigators would not see this as a confounding problem because they believe that high rates of psychiatric comorbidity indicate that CFS is mainly a psychiatric disorder….Most importantly, the erroneous inclusion of people with primary psychiatric conditions in CFS samples will have detrimental consequences for both the interpretation of both epidemiological and treatment efficacy findings” (Professor Leonard Jason: Problems with the New CDC CFS Prevalence Estimates: IACFS/ME: 2007; Professor Leonard Jason: How Science can stigmatise: the case of Chronic Fatigue Syndrome. JCFS 2007:14:85-103). A Canadian psychiatrist who specialises in ME/CFS, Dr Ellie Stein, said on 25th May 2007 at the ME Research UK International Research Conference held at the Edinburgh Conference Centre, Heriot Watt University, that the Oxford criteria “could describe almost anybody. I do not believe that studies which use the Oxford criteria can be generalised to patients which most of us in this room would consider to have ME/CFS”. Indeed, on 14th July 2006 Professor White sought Ethics Committee approval to advertise his PACE Trial to GPs, asking them to refer anyone “whose main complaint is fatigue (or a synonym)”. The MRC PACE Trial entry criteria had an “open door” policy and did not identify people with ME/CFS (those supposedly under study in the PACE Trial), hence the reported results cannot be claimed to refer to ME/CFS patients.
2. The MRC PACE Trial excluded children and those who are severely affected. The results of any trial that excluded those who are severely affected cannot be taken seriously.
3. The MRC PACE Trial used no objective measures of outcome (ie. actigraphy) to show improvement or non-improvement and relies upon participants’ subjective answers to questionnaires. This is an unscientific way to gather evidence. There can be no empirical science without objective measures – objective measures are at the heart of the scientific method.
4. Professor White has claimed that CBT and GET can cure people with ME/CFS, for example, he claims that “a full recovery is possible” (Psychother Psychosom 2007:76(3):171-176) and the participants’ CBT Manual informs people that the PACE Trial therapies are curative and that “many people have successfully overcome their CFS/ME” with such behavioural interventions (“Information for relatives, partners and friends”, page 123). Moreover, in the NHS Plus Report, for which Peter White was an external assessor but failed to reveal that he was peer-reviewing his own work (Occupational Aspects of the Management of Chronic Fatigue Syndrome, October 2006), it was claimed that CBT/GET have been shown to be effective in restoring the ability to work in those who were absent from work. However, in a Statement in 2009 for the British High Court, his American peers doubted the possibility of the 23% to 25% recovery rate that Peter White claimed he had achieved (http://www.meactionuk.org.uk/JR_Statements_-_extracts.htm). Commenting on her own recently co-authored paper on CBT (C. Lopez et al, Journal of Psychosomatic Research 2011: doi: 10.1016/j.jpsychores.2010.11.010 Epub ahead of print), Professor Nancy Klimas said on the record: “Dr White challenged me in a meeting a year ago saying nothing else had been published to deny this finding. So now you have a publication, written by a psychologist and well-regarded CBT expert to use when you want to argue that CBT helps people with this illness (as it does in every chronic disease model ever tested) but does not cure the illness” (http://networkedblogs.com/dG7pU).
5. The recent drugs industry scandal concerning Avandia has resonance for ME/CFS research. The editor of the BMJ, Fiona Godlee, concluded that pharmaceutical companies could not be trusted to generate honest research in respect of their own products and that independent scientific corroboration would always be required. The same principle should apply to non-pharmaceutical research, but the only research supporting CBT/GET has been generated by those who stand to gain most in professional and financial terms from its promotion. Similar independent corroboration should be required before experimental psychological interventions are applied nationally.
6. Professor White and his co-Principal Investigators all have financial links with the health insurance industry, a matter of grave concern to the former Chairman of a House of Commons Science and Technology Select Committee and former Dean of Biology (Dr Ian Gibson MP); a member of the Home Affairs Select Committee (Ann Cryer MP); a Minister of State for the Environment (The Rt Hon Michael Meacher MP); a former President of the Royal College of Physicians (Lord Turnberg); the Deputy Speaker of the House of Lords (the Countess of Mar), and a former Health Minister and Honorary Fellow of the Royal College of Physicians (Baroness Julia Cumberledge) (Gibson Inquiry Parliamentarians’ Report, 2006). In an obvious reference to Professor White, this Report stated: “There have been numerous cases where advisors to the DWP have also had consultancy roles in medical insurance companies, particularly the company UNUMProvident. Given the vested interest that private medical insurance companies have in ensuring CFS/ME remains classified as a psychosocial illness, there is a blatant conflictof interest here. The Group finds this to be an area for serious concern…”. In Professor White’s case, this blatant conflict of interest remains unresolved, as he is Chief Medical Officer for the insurance giant Swiss Re, and another of the PACE Trial Principal Investigators, Professor Michael Sharpe, is associated with UNUMProvident.
7. There is existing acknowledgement that there is no long-term benefit from CBT:
· Professor Simon Wessely, who directed the PACE Clinical Trial Unit, is on record stating that CBT provides no effective treatment: in his Editorial (JAMA 19th September 2001:286:11) he stated that CBT and GET are only “modestly effective” and that neither is “remotely curative”.
Wessely is also on record as stating: “It should be kept in mind that evidence from randomised trials bears no guarantee for treatment success in routine practice. In fact, many CFS patients, in specialised treatment centres and the wider world, do not benefit from these interventions” (The act of diagnosis: pros and cons of labelling chronic fatigue syndrome. Marcus JH Huibers and Simon Wessely. Psychological Medicine 2006:36: (7): 895-900).
It would surely have been better if the (more than) £5 million spent on investigating what was already known had been spent on biomedical research into this complex disorder and in helping the severely affected (for instance, by providing domestic and personal assistance) and on effective pain relief for those afflicted.
8. The Adaptive Pacing Therapy (APT) used in the PACE Trial is not the same as pacing, a common sense approach that patients find helpful. The CBT Therapists’ Manual states about APT: “Activity is therefore planned”, which indicates a structured activity regime, and the APT Therapists’ Manual lists other requirements for APT including “plan set activity in advance” (so activity must be “set activity”, not simply what the patient may be capable of doing at the time); there must be “activity analysis”; APT participants must “constantly review model, diaries and activity” and there is the requirement to “involve relatives”, which is nothing like “doing what you can when you can”. Professor White is on record as being strongly opposed to pacing: “The theoretical risk of pacing is that the patient remains trapped by their symptoms in the envelope of ill-health” (Editorial: Postgrad Med J. 2002:78:445-446), so it was unlikely that he would find pacing to be effective. This should be contrasted with his American counterparts, who promote the “energy envelope” management strategy (The impact of energy modulation on physical function and fatigue severity among patients with ME/CFS. Leonard Jason et al; Patient Educ Couns 2009:77:237-241).
9. The MRC FINE Trial (sibling of the PACE Trial) failed spectacularly. It found that “pragmatic rehabilitation” (PR, based on CBT/GET) was minimally effective in reducing fatigue and improving sleep only whilst participants were engaged in the programme and that there was no statistically significant effect at follow-up. Furthermore, pragmatic rehabilitation had no statistically significant effect on physical functioning; equally, its effect on depression had diminished at follow-up. Moreover the other intervention being tested (“supportive listening” or SL) had no effect in reducing fatigue, improving physical functioning, sleep or depression.
10. The results of the PACE Trial may mean that patients who have genuine ME as opposed to chronic “fatigue” will continue to be denied appropriate investigation and treatment; they may be deprived of State benefits necessary for survival; their insurance claims may be rejected, and they will be condemned to an even lower quality of life.
11. The results of the MRC PACE Trial were anticipated to be in favour of the interventions being studied because the Trial is but one prong of a UK Blair Government three-pronged “integrated plan” to roll out CBT and GET across the nation for those with ME/CFS (Department of Health, 2004, Statement of Information released via the Welsh Assembly Disclosure Log 2296), the other two prongs being the NICE Clinical Guideline 53 published in August 2007 and the national “Fatigue” Clinics that cost taxpayers £8.5 million to deliver an intervention known to be ineffective and to have made at least 50% of those who have undertaken it actively worse. The “integrated plan” was designed to ensure compliance, so it was never in doubt that the PACE Trial results would conform to the “integrated plan”, as indeed is the case (ie. CBT and GET are said to be safe and moderately effective treatments for everyone with ME/CFS and to be better than APT).
12. On 12th October 1996, a Lancet editorial about the Joint Royal Colleges’ Report on CFS noted that psychiatrists had monopolised the research and management of ME/CFS: “The sixteen strong committee was top heavy with psychiatric experts, so the emphasis on psychological causes and management is no surprise. Charles Shepherd, Medical Director for the ME Association, told us: ‘The committee was rigged, with dissenting voices excluded’.” Unfortunately, nothing has changed in the fifteen years since. Except apparently the Lancet editorial policy.
For a detailed analysis of the whole PACE Trial, including evidence of the in-built facility for the DWP to have unrestricted access to participants’ medical notes; the fact that participants’ data was not kept securely and was stolen but they were not informed of this; the apparent failure of the Principal Investigators to adhere to the Declaration of Helsinki; the fact that some participants were told --- against the basic rules of any clinical trial --- that the intervention they were receiving was curative; the dilution of the entry criteria after the trial had commenced (so the second and subsequent tranches of participants were less ill and thus more likely to respond favourably to the interventions); the apparent lack of clinical equipoise, and the fact that the Trial manuals describe behaviours and techniques to be used by the Trial therapists that should not --- and cannot --- be considered ethical by an independent and reasonable observer, see “Magical Medicine: how to make a disease disappear”: http://www.meactionuk.org.uk/magical-medicine.htm .
Sent on behalf of:
Malcolm Hooper Ph.D.,B.Pharm.,C.Chem.,MRIC
Emeritus Professor of Medicinal Chemistry
University of Sunderland, SUNDERLAND SR2 3SD
Home:
2, Nursery Close
SUNDERLAND
SR3 1PA
Phone 0191-5285536
email: hoopersecundus@talktalk.net
Wednesday, January 19, 2011
Adapting Successfully to Long Term Illness – May Start with Dumping the Denial
Another must read for anyone struggling with pacing
Adapting Successfully to Long Term Illness – May Start with Dumping the Denial
ADAPTING TO FIBROMYALGIA
When I received the diagnosis of fibromyalgia in February of 2001, I realized I had been unknowingly living with illness and denying it most of my life.
Even as a child, I felt like my nerves were all prickly and fuzzy like static buildup. I lived with pain, stiffness, fatigue and troubled sleep. Into adulthood, weather changes, certain foods, lights, sound, the touch of my clothes, even thinking hurt. Every day was an exhausting struggle.
But the worst would pass, and I would be told how healthy I looked and that I was just out of shape and needed to push myself harder, and that there was really nothing wrong with me and I was just too sensitive.
I accepted this view of myself and lived in denial of the truth of my experience
Adapting Successfully to Long Term Illness – May Start with Dumping the Denial
ADAPTING TO FIBROMYALGIA
When I received the diagnosis of fibromyalgia in February of 2001, I realized I had been unknowingly living with illness and denying it most of my life.
Even as a child, I felt like my nerves were all prickly and fuzzy like static buildup. I lived with pain, stiffness, fatigue and troubled sleep. Into adulthood, weather changes, certain foods, lights, sound, the touch of my clothes, even thinking hurt. Every day was an exhausting struggle.
But the worst would pass, and I would be told how healthy I looked and that I was just out of shape and needed to push myself harder, and that there was really nothing wrong with me and I was just too sensitive.
I accepted this view of myself and lived in denial of the truth of my experience
Psychological abuse - Wikipedia, the free encyclopedia
Psychological abuse - Wikipedia, the free encyclopedia
Abusers may aim to avoid household chores or exercise total control of family finances. Abusers can be very manipulative, often recruiting friends, law officers and court officials, even the victim's family to their side, while shifting blame to the victim.[33][34]
Abusers may aim to avoid household chores or exercise total control of family finances. Abusers can be very manipulative, often recruiting friends, law officers and court officials, even the victim's family to their side, while shifting blame to the victim.[33][34]
He who cannot do what he wants must make do with what he can.
He who cannot do what he wants must make do with what he can.
- Terence
So poignant for anyone with M.E. - pacing may prevent avoid the 'boom-bust' cycle of overexertion and relapse but leads inevitably to a restricted lifestyle wherein the everyday joys of bird song or the first flowers of spring for example have to be fully appreciated or you would go stir crazy
- Terence
So poignant for anyone with M.E. - pacing may prevent avoid the 'boom-bust' cycle of overexertion and relapse but leads inevitably to a restricted lifestyle wherein the everyday joys of bird song or the first flowers of spring for example have to be fully appreciated or you would go stir crazy
Wednesday, December 08, 2010
US survey of women with fibromyalgia highlights its profound impact & their struggle for acknowledgment
US survey of women with fibromyalgia highlights its profound impact & their struggle for acknowledgment
As a result of fibromyalgia:
• Two thirds (67%) of respondents say they are unable to keep up with household chores,
• Nearly half (47%) report that their work life or career has been negatively affected,
• And two in five (42%) spend less quality time with their friends.
• Nearly one third (31%) say fibromyalgia has negatively affected their ability to experience intimacy.
As a result of fibromyalgia:
• Two thirds (67%) of respondents say they are unable to keep up with household chores,
• Nearly half (47%) report that their work life or career has been negatively affected,
• And two in five (42%) spend less quality time with their friends.
• Nearly one third (31%) say fibromyalgia has negatively affected their ability to experience intimacy.
Yvette Cooper & ME: Clarification from Dr William Weir
Yvette Cooper: 'There's nothing better than politics' | Politics | The Guardian
Clarification from Dr William Weir
Margaret Williams 7th December 2010
Dr William Weir, Consultant Physician of 10, Harley Street, London W1G 9PF
(who specialises in ME/CFS) wishes to correct the statement made in an
article in The Guardian on 4th December 2010 by the Shadow Foreign
Secretary, Yvette Cooper MP.
In an interview (?There?s nothing better than politics?), Yvette Cooper MP
is quoted as saying about the time she suffered from ME:
"... But my consultant did say that over 90% [of ME patients] made a full
recovery, and it never came back. It's one of those things you hope people
suffering from it now will realise..." (
http://www.guardian.co.uk/politics/2010/dec/04/yvette-cooper-guardian-interview
).
It is in the public domain that Yvette Cooper?s consultant was Dr William
Weir, since Ms Cooper herself made this information public in an interview
about her illness in the Daily Mail about ten years ago.
Dr Weir is concerned about this statement in two respects: (1) he did not
give Ms Cooper such advice and (2) it is untrue that 90% of ME/CFS patients
make a full recovery.
Dr Weir points out that the statistic Ms Cooper is probably (mis)quoting is
?Of those who recover, 90% tend to do so in the first year of the illness?,
but in those who remain unwell after the first year, there is a lesser
tendency towards recovery.
It should be said that at the All Party Parliamentary Group on ME (APPGME)
meeting held on 21st October 2009 in Committee Room 21 at the House of
Commons, Ms Cooper was made aware of the many problems faced by people with
ME/CFS in relation to the Department for Work and Pensions, specifically the
way in which a patient?s own GP and specialist were progressively being
removed from the opinion-gathering process and replaced by doctors who know
nothing of the patient?s medical background and even less about ME/CFS. In
response, she noted these concerns but did not indicate that there would be
any shift in the DWP position (ME Association summary of APPGME meeting:
http://tinyurl.com/ycnw6q5).
Permission to repost
Clarification from Dr William Weir
Margaret Williams 7th December 2010
Dr William Weir, Consultant Physician of 10, Harley Street, London W1G 9PF
(who specialises in ME/CFS) wishes to correct the statement made in an
article in The Guardian on 4th December 2010 by the Shadow Foreign
Secretary, Yvette Cooper MP.
In an interview (?There?s nothing better than politics?), Yvette Cooper MP
is quoted as saying about the time she suffered from ME:
"... But my consultant did say that over 90% [of ME patients] made a full
recovery, and it never came back. It's one of those things you hope people
suffering from it now will realise..." (
http://www.guardian.co.uk/politics/2010/dec/04/yvette-cooper-guardian-interview
).
It is in the public domain that Yvette Cooper?s consultant was Dr William
Weir, since Ms Cooper herself made this information public in an interview
about her illness in the Daily Mail about ten years ago.
Dr Weir is concerned about this statement in two respects: (1) he did not
give Ms Cooper such advice and (2) it is untrue that 90% of ME/CFS patients
make a full recovery.
Dr Weir points out that the statistic Ms Cooper is probably (mis)quoting is
?Of those who recover, 90% tend to do so in the first year of the illness?,
but in those who remain unwell after the first year, there is a lesser
tendency towards recovery.
It should be said that at the All Party Parliamentary Group on ME (APPGME)
meeting held on 21st October 2009 in Committee Room 21 at the House of
Commons, Ms Cooper was made aware of the many problems faced by people with
ME/CFS in relation to the Department for Work and Pensions, specifically the
way in which a patient?s own GP and specialist were progressively being
removed from the opinion-gathering process and replaced by doctors who know
nothing of the patient?s medical background and even less about ME/CFS. In
response, she noted these concerns but did not indicate that there would be
any shift in the DWP position (ME Association summary of APPGME meeting:
http://tinyurl.com/ycnw6q5).
Permission to repost
Wednesday, December 01, 2010
Gearing Up for the Big Search for XMRV - Health Blog - WSJ
Gearing Up for the Big Search for XMRV - Health Blog - WSJ
Lipkin tells the Health Blog that the study focuses on whether XMRV or other viruses in the same family are found in higher frequency in patients with CFS.
As a starting point, everyone had to agree on how to define a CFS patient for the purposes of the study. The issue has been highly contentious and Lipkin says they tried to agree to criteria for patient selection that “includes everyone’s viewpoints.”
The solution: the study will seek to enroll people who in addition to meeting criteria for two widely used, symptom-based definitions of CFS, showed signs of infection — such as a sore throat or tender lymph nodes — around the time they developed CFS. The thought is that if there is a viral link to CFS, it’s most likely to show up in those patients.
More work still needs to be done. The physicians participating in the study will meet with Lipkin in coming weeks to develop a standard checklist for evaluating patients. The scientists are still working out a common protocol for how they handle and process the blood. But Lipkin tells the Health Blog that everything they are doing is designed to make it possible to finally end the debate over whether XMRV is associated with CFS
Lipkin tells the Health Blog that the study focuses on whether XMRV or other viruses in the same family are found in higher frequency in patients with CFS.
As a starting point, everyone had to agree on how to define a CFS patient for the purposes of the study. The issue has been highly contentious and Lipkin says they tried to agree to criteria for patient selection that “includes everyone’s viewpoints.”
The solution: the study will seek to enroll people who in addition to meeting criteria for two widely used, symptom-based definitions of CFS, showed signs of infection — such as a sore throat or tender lymph nodes — around the time they developed CFS. The thought is that if there is a viral link to CFS, it’s most likely to show up in those patients.
More work still needs to be done. The physicians participating in the study will meet with Lipkin in coming weeks to develop a standard checklist for evaluating patients. The scientists are still working out a common protocol for how they handle and process the blood. But Lipkin tells the Health Blog that everything they are doing is designed to make it possible to finally end the debate over whether XMRV is associated with CFS
Could a Virus Cause Chronic Fatigue Syndrome? - Newsweek
Could a Virus Cause Chronic Fatigue Syndrome? - Newsweek
Validation In a Virus?
For years, chronic-fatigue syndrome has been dismissed by the medical establishment. Now researchers may be closing in on a culprit.
(Page 1 of 2)
Mitsuko Nagone / Flikr-Getty Images
It’s hard, even years later, to read Laura Hillenbrand’s wrenching description of her pain. Hillenbrand, 43, is the author of Seabiscuit and the new and widely acclaimed book Unbroken, an account of the World War II bombardier Louis Zamperini. But she is also the most articulate spokesperson for chronic-fatigue syndrome, the mysterious disorder that has plagued her since college. In an essay she wrote for The New Yorker in 2003, Hillenbrand described her aching joints, swollen glands, nausea, and exhaustion. The debilitating and unproductive trek from doctor to doctor. The disregard, the shame, and the elusive quest for relief. Chronic-fatigue syndrome plunged Hillenbrand into a state of disorientation; words looked like meaningless shapes; thoughts disappeared. “I was at a sensory distance from the world,” she wrote, “as if I were wrapped in clear plastic.”
It is a metaphor for the illness itself. For decades, chronic-fatigue syndrome has been mired in layers of medical and scientific uncertainty. Since Hillenbrand’s symptoms emerged in 1987, doctors’ awareness has grown and researchers have come up with tantalizing hypotheses about how the disorder has made as many as 4 million Americans sick. But every advance seems to come with a caveat, including a recent series of dramatic and confounding discoveries. In August a team of researchers led by the National Institutes of Health and the FDA announced that they’d found evidence of a family of retroviruses in the blood of patients with chronic-fatigue syndrome. The study mirrored an earlier report, published last year, which was celebrated by patients because it raised the possibility of pinpointing a cause and a treatment. But a third major study published this summer by the Centers for Disease Control and Prevention found no such link. The big hope now is that a new nationwide investigation, directed by a leading virologist at Columbia University, will bring greater urgency and find some clarity within the next 12 to 18 months. “Cutting-edge science is often not definitive,” says Dr. William Schaffner, an infectious-disease expert at Vanderbilt University School of Medicine. “Keep your seat belts tight.”
It’s been a long ride. Since the illness first surfaced in the U.S. in the ’80s, chronic-fatigue patients have endured skepticism from doctors, who have not known what to make of a constellation of symptoms that has no known cause, no diagnostic test, and no specific treatment. Many patients, including Hillenbrand, have been referred to psychiatrists. For years the disorder was not a priority at the highest levels; in 1999 a government audit found that the CDC had diverted millions of chronic-fatigue research dollars to other programs. The complex disorder continues to baffle the medical community because symptoms can vary dramatically over time and the spectrum of patients is vast. Some hold it together during the week but collapse on weekends; the most severely affected are bedridden. “Even though chronic-fatigue syndrome isn’t a death sentence, it’s a life sentence,” says Kim McCleary, president of the Chronic Fatigue and Immune Dysfunction Syndrome Association of America, a leading funding and advocacy organization. “People lead diminished lives because of the illness.”
What patients want is scientific validation. In the study published last year, researchers led by Judy Mikovits, of the Whittemore Peterson Institute (WPI) in Reno, Nev., identified XMRV, an infectious retrovirus in the same family as the AIDS virus, in the blood of 67 percent of patients suffering from chronic-fatigue syndrome. “There’s no question it’s in the people we found it in,” says Mikovits. The NIH study detected the DNA of viruses related to XMRV in 87 percent of its patients, compared with only 7 percent of healthy controls. But other studies, including the CDC’s report and several in Europe, found nothing. Nobody knows why with any certainty. Viral testing methods differ among labs. It’s also possible that the virus is endemic to certain geographic areas and not to others. Perhaps most significant: some patients, including those studied by the WPI and the NIH, are much sicker than others. “It just highlights that there’s still a lot we don’t know about this virus,” says the CDC’s Dr. Steve Monroe.
Including: how do humans get XMRV in the first place? “No one has any idea,” says Mikovits. Researchers emphasize that it’s still not known if the virus family detected actually causes chronic-fatigue syndrome. “It could be a bystander effect,” says the NIH’s Dr. Harvey Alter. But the possibility of infection has raised concern. Earlier this year an international blood-bank association urged members to discourage chronic-fatigue patients from donating because of the potential risk of transmitting the virus. The American Red Cross goes even further, deferring indefinitely any donor who reveals she has been diagnosed with chronic-fatigue syndrome or an XMRV infection.
Today, doctors prescribe an array of treatments—including exercise programs, cognitive behavioral therapy, painkillers, and sleep medications—to relieve symptoms. But if chronic fatigue is caused by a virus, it raises the question: should patients be on antiretrovirals, the same drugs prescribed to people with HIV? Some chronic-fatigue patients are already taking them off-label, but they can have serious side effects. Dr. Andrew Mason, a virologist at the University of Alberta in Canada, says it’s time to launch a well-planned clinical trial to test the drugs’ effectiveness. It wasn’t until antibiotics were prescribed to treat peptic ulcers, says Mason, that the medical community finally accepted bacteria as the culprit. “It’s the only way to win this battle,” he says.
But, as with so many aspects of chronic-fatigue syndrome, there is disagreement here, too. Other specialists say the science needs to be on firmer ground before trials are launched. “Patients are clearly ill and suffering, and we need to address treatment as rapidly as we can,” says Dr. Ian Lipkin, director of Columbia’s Center for Infection and Immunity. “But the first order of business is to determine if the association is real.”
In early November U.S. researchers met with Lipkin, who is spearheading the next phase of research. The plan is to collect blood samples from at least 150 patients across the U.S. with similar disease characteristics, then compare them with healthy controls matched for age, sex, and geography so that scientists can sort out the confusion and establish as conclusively as possible if a viral link is valid.
Scientific discovery is never straightforward, much as we all want it to be. More often than not, it’s a tangle of hunches, studies, disagreements, false starts, tangents, and frustrations. One day, everybody hopes, the layers of wrapping will come off. The cause—or, very possibly, causes—of chronic-fatigue syndrome will become clear. Treatments will become available. And Laura Hillenbrand and millions of others can start reclaiming their vitality and their lives.
Validation In a Virus?
For years, chronic-fatigue syndrome has been dismissed by the medical establishment. Now researchers may be closing in on a culprit.
(Page 1 of 2)
Mitsuko Nagone / Flikr-Getty Images
It’s hard, even years later, to read Laura Hillenbrand’s wrenching description of her pain. Hillenbrand, 43, is the author of Seabiscuit and the new and widely acclaimed book Unbroken, an account of the World War II bombardier Louis Zamperini. But she is also the most articulate spokesperson for chronic-fatigue syndrome, the mysterious disorder that has plagued her since college. In an essay she wrote for The New Yorker in 2003, Hillenbrand described her aching joints, swollen glands, nausea, and exhaustion. The debilitating and unproductive trek from doctor to doctor. The disregard, the shame, and the elusive quest for relief. Chronic-fatigue syndrome plunged Hillenbrand into a state of disorientation; words looked like meaningless shapes; thoughts disappeared. “I was at a sensory distance from the world,” she wrote, “as if I were wrapped in clear plastic.”
It is a metaphor for the illness itself. For decades, chronic-fatigue syndrome has been mired in layers of medical and scientific uncertainty. Since Hillenbrand’s symptoms emerged in 1987, doctors’ awareness has grown and researchers have come up with tantalizing hypotheses about how the disorder has made as many as 4 million Americans sick. But every advance seems to come with a caveat, including a recent series of dramatic and confounding discoveries. In August a team of researchers led by the National Institutes of Health and the FDA announced that they’d found evidence of a family of retroviruses in the blood of patients with chronic-fatigue syndrome. The study mirrored an earlier report, published last year, which was celebrated by patients because it raised the possibility of pinpointing a cause and a treatment. But a third major study published this summer by the Centers for Disease Control and Prevention found no such link. The big hope now is that a new nationwide investigation, directed by a leading virologist at Columbia University, will bring greater urgency and find some clarity within the next 12 to 18 months. “Cutting-edge science is often not definitive,” says Dr. William Schaffner, an infectious-disease expert at Vanderbilt University School of Medicine. “Keep your seat belts tight.”
It’s been a long ride. Since the illness first surfaced in the U.S. in the ’80s, chronic-fatigue patients have endured skepticism from doctors, who have not known what to make of a constellation of symptoms that has no known cause, no diagnostic test, and no specific treatment. Many patients, including Hillenbrand, have been referred to psychiatrists. For years the disorder was not a priority at the highest levels; in 1999 a government audit found that the CDC had diverted millions of chronic-fatigue research dollars to other programs. The complex disorder continues to baffle the medical community because symptoms can vary dramatically over time and the spectrum of patients is vast. Some hold it together during the week but collapse on weekends; the most severely affected are bedridden. “Even though chronic-fatigue syndrome isn’t a death sentence, it’s a life sentence,” says Kim McCleary, president of the Chronic Fatigue and Immune Dysfunction Syndrome Association of America, a leading funding and advocacy organization. “People lead diminished lives because of the illness.”
What patients want is scientific validation. In the study published last year, researchers led by Judy Mikovits, of the Whittemore Peterson Institute (WPI) in Reno, Nev., identified XMRV, an infectious retrovirus in the same family as the AIDS virus, in the blood of 67 percent of patients suffering from chronic-fatigue syndrome. “There’s no question it’s in the people we found it in,” says Mikovits. The NIH study detected the DNA of viruses related to XMRV in 87 percent of its patients, compared with only 7 percent of healthy controls. But other studies, including the CDC’s report and several in Europe, found nothing. Nobody knows why with any certainty. Viral testing methods differ among labs. It’s also possible that the virus is endemic to certain geographic areas and not to others. Perhaps most significant: some patients, including those studied by the WPI and the NIH, are much sicker than others. “It just highlights that there’s still a lot we don’t know about this virus,” says the CDC’s Dr. Steve Monroe.
Including: how do humans get XMRV in the first place? “No one has any idea,” says Mikovits. Researchers emphasize that it’s still not known if the virus family detected actually causes chronic-fatigue syndrome. “It could be a bystander effect,” says the NIH’s Dr. Harvey Alter. But the possibility of infection has raised concern. Earlier this year an international blood-bank association urged members to discourage chronic-fatigue patients from donating because of the potential risk of transmitting the virus. The American Red Cross goes even further, deferring indefinitely any donor who reveals she has been diagnosed with chronic-fatigue syndrome or an XMRV infection.
Today, doctors prescribe an array of treatments—including exercise programs, cognitive behavioral therapy, painkillers, and sleep medications—to relieve symptoms. But if chronic fatigue is caused by a virus, it raises the question: should patients be on antiretrovirals, the same drugs prescribed to people with HIV? Some chronic-fatigue patients are already taking them off-label, but they can have serious side effects. Dr. Andrew Mason, a virologist at the University of Alberta in Canada, says it’s time to launch a well-planned clinical trial to test the drugs’ effectiveness. It wasn’t until antibiotics were prescribed to treat peptic ulcers, says Mason, that the medical community finally accepted bacteria as the culprit. “It’s the only way to win this battle,” he says.
But, as with so many aspects of chronic-fatigue syndrome, there is disagreement here, too. Other specialists say the science needs to be on firmer ground before trials are launched. “Patients are clearly ill and suffering, and we need to address treatment as rapidly as we can,” says Dr. Ian Lipkin, director of Columbia’s Center for Infection and Immunity. “But the first order of business is to determine if the association is real.”
In early November U.S. researchers met with Lipkin, who is spearheading the next phase of research. The plan is to collect blood samples from at least 150 patients across the U.S. with similar disease characteristics, then compare them with healthy controls matched for age, sex, and geography so that scientists can sort out the confusion and establish as conclusively as possible if a viral link is valid.
Scientific discovery is never straightforward, much as we all want it to be. More often than not, it’s a tangle of hunches, studies, disagreements, false starts, tangents, and frustrations. One day, everybody hopes, the layers of wrapping will come off. The cause—or, very possibly, causes—of chronic-fatigue syndrome will become clear. Treatments will become available. And Laura Hillenbrand and millions of others can start reclaiming their vitality and their lives.
BBC News - Dorset woman with severe ME 'left to rot by the NHS'
BBC News - Dorset woman with severe ME 'left to rot by the NHS'
A Dorset woman with severe ME who has been unable to leave her bed for eight years has been "left to rot" by the NHS, her family has said.
A Dorset woman with severe ME who has been unable to leave her bed for eight years has been "left to rot" by the NHS, her family has said.
Sunday, November 28, 2010
CFS Central: NOV 29 PROTEST AT BARTS
CFS Central: NOV 29 PROTEST AT BARTS
Frustrated by the care at Barts, O’Grady made an appointment with a rheumatologist at a different hospital, who prescribed anti-inflammatories to treat the pain in her back and neck, which proved helpful. When she had given her Barts doctor the same list of rheumatologic symptoms, “he looked bored, said nothing and started cleaning his fingernails,” she recalls. “Another doctor claimed they didn’t need to run many tests on ME/CFS patients because “they would know the results simply by looking at the patients.”
For more information on the protest:
http://www.notsonice4me.co.uk/BARTS_PROTEST.htm
Frustrated by the care at Barts, O’Grady made an appointment with a rheumatologist at a different hospital, who prescribed anti-inflammatories to treat the pain in her back and neck, which proved helpful. When she had given her Barts doctor the same list of rheumatologic symptoms, “he looked bored, said nothing and started cleaning his fingernails,” she recalls. “Another doctor claimed they didn’t need to run many tests on ME/CFS patients because “they would know the results simply by looking at the patients.”
For more information on the protest:
http://www.notsonice4me.co.uk/BARTS_PROTEST.htm
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