Doctor Speedy and ME in search of medical honesty
Friday, January 30, 2015
Wednesday, January 28, 2015
PACE trials Professor Peter White: exercise causes immunological damage in ME
PACE trials Professor Peter White:
"Finally, we found that exercise induced a sustained elevation in the concentration of TNF-α, which was still present three days later, and this only occurred in CFS patients."
###########
"The causal mechanisms involved and the direction of the relationship between these mechanisms remain to be elucidated. Altered cytokine balance, for example, following an infection, may modify the threshold at which cytokine release occurs with exercise or activity, setting up a vicious circle. These processes could contribute to the postexertional malaise, myalgia and the central fatigue that characterize CFS (1, 2, 4)."
Read more
"Finally, we found that exercise induced a sustained elevation in the concentration of TNF-α, which was still present three days later, and this only occurred in CFS patients."
###########
"The causal mechanisms involved and the direction of the relationship between these mechanisms remain to be elucidated. Altered cytokine balance, for example, following an infection, may modify the threshold at which cytokine release occurs with exercise or activity, setting up a vicious circle. These processes could contribute to the postexertional malaise, myalgia and the central fatigue that characterize CFS (1, 2, 4)."
Read more
Tuesday, January 27, 2015
Dr Friedman: exercise therapy would most likely kill the most severely affected
By Miriam E. Tucker, medscape.com::
Kenneth J. Friedman, PhD , a coauthor of an ME/CFS "primer" for clinicians and a former associate professor of pharmacology and physiology , New Jersey Medical School, Newark, pointed out another problem that the PACE trial shares with nearly every study done on ME/CFS: All have been conducted on ambulatory patients, leaving out the most severely affected, who are too sick to participate in studies.
"The extent to which the ambulatory population represents the spectrum of CFS patients is really not known," he told"Medscape Medical News". "If you're lying in bed and you can't move your head and you have to speak in whispers, GET therapy is not going to help you, and were you to attempt it, it would most likely kill you."
Dr Chalder declined to comment for this story.
Kenneth J. Friedman, PhD , a coauthor of an ME/CFS "primer" for clinicians and a former associate professor of pharmacology and physiology , New Jersey Medical School, Newark, pointed out another problem that the PACE trial shares with nearly every study done on ME/CFS: All have been conducted on ambulatory patients, leaving out the most severely affected, who are too sick to participate in studies.
"The extent to which the ambulatory population represents the spectrum of CFS patients is really not known," he told"Medscape Medical News". "If you're lying in bed and you can't move your head and you have to speak in whispers, GET therapy is not going to help you, and were you to attempt it, it would most likely kill you."
Dr Chalder declined to comment for this story.
Monday, January 26, 2015
Exercise will never improve my health or halt the progress of this illness
By Susan:
It's absolutely both ridiculous and infuriating that in 2015 there are supposed experts who are still "debating" whether or not sufferers of ME/CFS/FMS should consider exercise as a way to improving their health.
As a long term sufferer of these conditions for the past 20 years, I have attempted all kinds of things to improve my health (including pacing, GET, etc) and the only thing that I can say with absolute clarity is that nothing has made any difference at all.
Another observation I've made is that despite my optimism and sheer willpower over the past 20 years, my health has continued to deteriorate even further.
At the time of the original diagnosis I was a very busy mother of 3 who worked full time and studied at evening classes.
This is the one singular reason why I know without a shadow of a doubt that exercise, pacing or GET will never improve my health (or halt the progress of this illness).
The only current perceivable hope for myself and thousands of fellow suffers, lies firmly with the research that is being carried out in various medical institutions throughout the world.
To date, there are some very promising results which prove without doubt that there are clear abnormalities within the brain of ME/CFS/FMS suffers.
So, why on earth do we still have to endure and be subjected to such wildly inaccurate and clearly questionable reports from so-called experts who do more harm than good and do nothing at all to promote the possibility of a cure?
It's absolutely both ridiculous and infuriating that in 2015 there are supposed experts who are still "debating" whether or not sufferers of ME/CFS/FMS should consider exercise as a way to improving their health.
As a long term sufferer of these conditions for the past 20 years, I have attempted all kinds of things to improve my health (including pacing, GET, etc) and the only thing that I can say with absolute clarity is that nothing has made any difference at all.
Another observation I've made is that despite my optimism and sheer willpower over the past 20 years, my health has continued to deteriorate even further.
At the time of the original diagnosis I was a very busy mother of 3 who worked full time and studied at evening classes.
This is the one singular reason why I know without a shadow of a doubt that exercise, pacing or GET will never improve my health (or halt the progress of this illness).
The only current perceivable hope for myself and thousands of fellow suffers, lies firmly with the research that is being carried out in various medical institutions throughout the world.
To date, there are some very promising results which prove without doubt that there are clear abnormalities within the brain of ME/CFS/FMS suffers.
So, why on earth do we still have to endure and be subjected to such wildly inaccurate and clearly questionable reports from so-called experts who do more harm than good and do nothing at all to promote the possibility of a cure?
Sunday, January 25, 2015
Detecting neglected viral neurological infections in CSF
@ PubMed:
J Clin Microbiol. 2014 Jan;52(1):212-7. doi: 10.112/JCM.02270-13. Epub 2013 Nov 6.Virological diagnosis of central nervous system infections by use of PCR coupled with mass spectrometry analysis of cerebrospinal fluid samples.Lévêque N 1, Legoff J , Mengelle C , Mercier-Delarue S , N'guyen Y , Renois F , Tissier F , Simon F , Izopet J ,Andréoletti L .Author information
Abstract Viruses are the leading cause of central nervous system (CNS) infections, ahead of bacteria, parasites, and fungal agents. A rapid and comprehensive virologic diagnostic testing method is needed to improve the therapeutic management of hospitalized pediatric or adult patients. In this study, we assessed the clinical performance of PCR amplification coupled with electrospray ionization-time of flight mass spectrometry analysis (PCR-MS) for the diagnosis of viral CNS infections. Three hundred twenty-seven cerebrospinal fluid (CSF) samples prospectively tested by routine PCR assays between 2004 and 2012 in two university hospital centers (Toulouse and Reims, France) were retrospectively analyzed by PCR-MS analysis using primers targeted to adenovirus, human herpesviruses 1 to 8 (HHV-1 to -8), polyomaviruses BK and JC, parvovirus B19, and enteroviruses (EV). PCR-MS detected single or multiple virus infections in 190 (83%) of the 229 samples that tested positive by routine PCR analysis and in 10 (10.2%) of the 98 samples that tested negative. The PCR-MS results correlated well with herpes simplex virus 1 (HSV-1), varicella-zoster virus (VZV), and EV detection by routine PCR assays (kappa values [95% confidence intervals], 0.80 [0.69 to 0.92], 0.85 [0.71 to 0.98], and 0.84 [0.78 to 0.90], respectively), whereas a weak correlation was observed with Epstein-Barr virus (EBV) (0.34 [0.10 to 0.58]). Twenty-six coinfections and 16 instances of uncommon neurotropic viruses (HHV-7 [n = 13], parvovirus B19 [n = 2], and adenovirus [n = 1]) were identified by the PCR-MS analysis, whereas only 4 coinfections had been prospectively evidenced using routine PCR assays (P < 0.01).
In conclusion, our results demonstrated that PCR-MS analysis is a valuable tool to identify common neurotropic viruses in CSF (with, however, limitations that were identified regarding EBV and EV detection) and may be of major interest in better understanding the clinical impact of multiple or neglected viral neurological infe
ctions. PMID: * 24197874 * [PubMed - indexed for MEDLINE] * PMCID: * PMC3911460 * Free PMC Article
Saturday, January 24, 2015
There's an underlying metabolic problem in ME and exercise can't change or improve that
There's an underlying metabolic problem in ME and exercise can't change or improve that.
Friday, January 23, 2015
Gradually increasing exercise is something people with ME can NOT do
Gradually increasing exercise is something people with ME can NOT do, if they can they r in remission or the diagnosis is WRONG !!! Gradually increasing exercise causes severe relapses and has made many ME patients BEDRIDDEN for years or DECADES and most will never recover ... Unless we finally get proper treatment ie medication !!!
Thursday, January 22, 2015
Exercise physiologist Prof Keller: it is intellectually embarrassing to still suggest that ME is a psychological illness
This statement was sent to Patricia Carter by Prof. Betsy Keller:
Response to Lancet Psychiatry article from Prof. Betsy Keller, Ph.D., Ithaca College:
What is at issue with both the primary and secondary analyses of the PACE Trial is
1) The fundamental misrepresentation of ME patients as being individuals defined by the archaic and non-specific Oxford criteria, and
2)The tacit assumption that a statistically significant reduction in “fear avoidance beliefs” tracks with a meaningful decrease in functional impairment, the latter of which was not measured in the Pace trial.
Regarding diagnosis, use of the Oxford criteria for participant selection makes it likely that a portion of the study sample suffered from non-specific fatigue only. Further, participation in the PACE Trial necessitated a moderate to high level of function, without representation from those who are severely ill. While this is not uncommon in most studies, it is a major limitation so that conclusions should be fairly characterized with this fact in mind.
With respect to fear avoidance, I have yet to evaluate an adult-onset ME patient who did not want to recover their pre-illness level of function. Many such patients still persist in overreaching on those ‘good days’ in hopes that they will miraculously not fall prey to a dreaded post-exertion symptom rebound that they have experienced many times before.
In contrast, the pediatric-onset ME patient typically learns early on that activity overreaching exacerbates symptoms, and absent the institutional memory of a prior ‘healthy’ life, they soon become ‘activity avoiders’. However, if you ask, these children will tell you that they also wish to be like other healthy kids. For ME patients, activity overreaching equals symptom exacerbation, including decreased functional capacity. It’s a predictable action and reaction that is borne out by numerous and replicated physiological studies.
Given what we have learned in the past eight years about this illness, it is intellectually embarrassing to suggest that ME is a psychological illness. Likewise, to suggest that some with Me may not benefit from ‘support’ (CBT, support group or other) may rob patients of the opportunity to develop management (not healing) strategies that could be helpful. However, with regard to GET, there are very, very few individuals in the world who truly understand the hairline trigger created by the aerobic metabolism pathology in these patients.
A statement proclaiming the efficacy of GET for those with ME must be founded on actual physiological evidence of positive physiological adaptation and no symptom exacerbation, and should not incude words such as “suggest” or “might” when encouraging therapists to promote more physical activities amongst their ME patients. To state, as the authors have done, that the results of the PACE Trial provide sufficient evidence for therapists to couple CBT with GET is irresponsible and harmful. Notwithstanding the large sample size of the PACE Trial, outcome measures were simply not chosen to allow for such a conclusion regardless of the statistical power.
The Economist (1/17/15), not typically regarded as a foremost scientific or medical journal, reminded us in an article about the PACE analysis that the link between a healthy mind and healthy body has been well established for centuries. So it is not surprising that helping one to understand their symptoms and learn supportive strategies to manage profound exhaustion, post-exertion symptom exacerbation, cognitive impairment, unrefreshing sleep, and often pain and dysregulated autonomic nervous system functions (orthostatic intolerance, POTS, GI symptoms and more), may be beneficial to a ME sufferer. However, as The Economist also pointed out, the healthy mind-body ink is “…by no means the same as saying something is all in the mind.”
Betsy Keller, Ph.D. Ithaca, NY ( Betsy Keller: Professor, Department of Exercise and Sport Sciences)
# Exercise physiologist prof Keller: ME/CFS patients will respond abnormally to 2-day cardiopulmonary exercise
Response to Lancet Psychiatry article from Prof. Betsy Keller, Ph.D., Ithaca College:
What is at issue with both the primary and secondary analyses of the PACE Trial is
1) The fundamental misrepresentation of ME patients as being individuals defined by the archaic and non-specific Oxford criteria, and
2)The tacit assumption that a statistically significant reduction in “fear avoidance beliefs” tracks with a meaningful decrease in functional impairment, the latter of which was not measured in the Pace trial.
Regarding diagnosis, use of the Oxford criteria for participant selection makes it likely that a portion of the study sample suffered from non-specific fatigue only. Further, participation in the PACE Trial necessitated a moderate to high level of function, without representation from those who are severely ill. While this is not uncommon in most studies, it is a major limitation so that conclusions should be fairly characterized with this fact in mind.
With respect to fear avoidance, I have yet to evaluate an adult-onset ME patient who did not want to recover their pre-illness level of function. Many such patients still persist in overreaching on those ‘good days’ in hopes that they will miraculously not fall prey to a dreaded post-exertion symptom rebound that they have experienced many times before.
In contrast, the pediatric-onset ME patient typically learns early on that activity overreaching exacerbates symptoms, and absent the institutional memory of a prior ‘healthy’ life, they soon become ‘activity avoiders’. However, if you ask, these children will tell you that they also wish to be like other healthy kids. For ME patients, activity overreaching equals symptom exacerbation, including decreased functional capacity. It’s a predictable action and reaction that is borne out by numerous and replicated physiological studies.
Given what we have learned in the past eight years about this illness, it is intellectually embarrassing to suggest that ME is a psychological illness. Likewise, to suggest that some with Me may not benefit from ‘support’ (CBT, support group or other) may rob patients of the opportunity to develop management (not healing) strategies that could be helpful. However, with regard to GET, there are very, very few individuals in the world who truly understand the hairline trigger created by the aerobic metabolism pathology in these patients.
A statement proclaiming the efficacy of GET for those with ME must be founded on actual physiological evidence of positive physiological adaptation and no symptom exacerbation, and should not incude words such as “suggest” or “might” when encouraging therapists to promote more physical activities amongst their ME patients. To state, as the authors have done, that the results of the PACE Trial provide sufficient evidence for therapists to couple CBT with GET is irresponsible and harmful. Notwithstanding the large sample size of the PACE Trial, outcome measures were simply not chosen to allow for such a conclusion regardless of the statistical power.
The Economist (1/17/15), not typically regarded as a foremost scientific or medical journal, reminded us in an article about the PACE analysis that the link between a healthy mind and healthy body has been well established for centuries. So it is not surprising that helping one to understand their symptoms and learn supportive strategies to manage profound exhaustion, post-exertion symptom exacerbation, cognitive impairment, unrefreshing sleep, and often pain and dysregulated autonomic nervous system functions (orthostatic intolerance, POTS, GI symptoms and more), may be beneficial to a ME sufferer. However, as The Economist also pointed out, the healthy mind-body ink is “…by no means the same as saying something is all in the mind.”
Betsy Keller, Ph.D. Ithaca, NY ( Betsy Keller: Professor, Department of Exercise and Sport Sciences)
# Exercise physiologist prof Keller: ME/CFS patients will respond abnormally to 2-day cardiopulmonary exercise
Wednesday, January 21, 2015
More hilarious nonsense from the authors of the PACE trial
by Sarah:
Isn't it strange how the PACE trial authors claim to have cured us with CBT and GET, yet they suggest that wearing an ankle bracelet for 7 days would be simply too much for us:
”.. we decided that a test that required participants to wear an actometer around their ankle for a week was too great a burden …”.
PD White, MC Sharpe, T Chalder, JC DeCesare, R Walwyn, for the PACE trial management group. Response to comments on “Protocol for the PACE trial”. BMC Neurol. 2007, 7:6doi:10.1186/1471-2377-7-6.
”.. we decided that a test that required participants to wear an actometer around their ankle for a week was too great a burden …”.
PD White, MC Sharpe, T Chalder, JC DeCesare, R Walwyn, for the PACE trial management group. Response to comments on “Protocol for the PACE trial”. BMC Neurol. 2007, 7:6doi:10.1186/1471-2377-7-6.
Tuesday, January 20, 2015
ME expert Dr Weir: a study of which I was a co-author explicitly disproved exercise phobia in ME
@BMJ: Re: Tackling fears about exercise is important for ME treatment:
The paradigm which states that the symptoms of ME have a psychological basis continues to be promoted (Lancet Psychiatry 2015: http://www.thelancet.com/journals/lanpsy/article/PIIS2215-0366 (14)00069-8/abstract). Most recently “exercise phobia” has been proposed as part of the problem, although a study of which I was a co-author in 2005 explicitly disproved this proposition (J Psychosom Res 58 (2005): 367-373). This paradigm has no plausible scientific basis and can only be described as a doctrine whose adherents continue to ignore the biomedical evidence which amply confirms the organic basis of the condition.
As someone with nearly 30 years’ experience of seeing patients with this severely disabling condition I continue to be dismayed by an irrational adherence by the psychological lobby to a doctrine that is not supported, even by their own studies, and which has been undermined by the published biomedical evidence.
The term “phobia” implies an irrational fear of exercise. The reason that ME sufferers avoid exercise is because they know from (sometimes bitter) experience that it makes them feel worse (often much worse) and results in post-exertional malaise (PEM). This is one of the cardinal features of the condition and can last for days, often for weeks and not uncommonly, for months. PEM is not imagined and causes a rational apprehension of exertion which should no longer be labelled as “phobia”. ME sufferers therefore avoid exercise for reasons which are entirely rational, and Dr Mark Van Ness’ recent work (now replicated elsewhere) has put much flesh on the bones of this argument.
As a simple analogy, a newly broken leg causes pain and most people so affected have an entirely rational fear of walking or even bearing weight on the affected limb. The pathophysiological basis of pain caused by a fracture is well understood, and now Dr Van Ness’ work has provided considerable insight into the pathophysiology of PEM. Not only do his findings give a clearer understanding of this devastating symptom of ME but they also effectively dispose of the argument that ME patients have “exercise phobia” or indeed that the disease is caused by patients wrongly believing they are physically ill.
Unfortunately, promotion of the doctrine that ME/CFS has a psychological basis continues to be disseminated by the inappropriately named “Science” Media Centre. They are not, in respect of ME, disseminating science at all, and continue to promote scientifically unsustainable and disproven theory, simultaneously ignoring proper scientific evidence. Sadly this is not an abstruse controversy, and patients whose genuine incapacity continues to be attributed to the psychological paradigm suffer enormously. I regard this as morally indefensible.
W.R.C.Weir FRCP, FRCP (Edin), Consultant Physician, 10 Harley Street, London W1G 9PF Competing interests: No competing interests20 January 2015William RC WeirConsultant Physician10 Harley St London W1G 9PF
The paradigm which states that the symptoms of ME have a psychological basis continues to be promoted (Lancet Psychiatry 2015: http://www.thelancet.com/journals/lanpsy/article/PIIS2215-0366 (14)00069-8/abstract). Most recently “exercise phobia” has been proposed as part of the problem, although a study of which I was a co-author in 2005 explicitly disproved this proposition (J Psychosom Res 58 (2005): 367-373). This paradigm has no plausible scientific basis and can only be described as a doctrine whose adherents continue to ignore the biomedical evidence which amply confirms the organic basis of the condition.
As someone with nearly 30 years’ experience of seeing patients with this severely disabling condition I continue to be dismayed by an irrational adherence by the psychological lobby to a doctrine that is not supported, even by their own studies, and which has been undermined by the published biomedical evidence.
The term “phobia” implies an irrational fear of exercise. The reason that ME sufferers avoid exercise is because they know from (sometimes bitter) experience that it makes them feel worse (often much worse) and results in post-exertional malaise (PEM). This is one of the cardinal features of the condition and can last for days, often for weeks and not uncommonly, for months. PEM is not imagined and causes a rational apprehension of exertion which should no longer be labelled as “phobia”. ME sufferers therefore avoid exercise for reasons which are entirely rational, and Dr Mark Van Ness’ recent work (now replicated elsewhere) has put much flesh on the bones of this argument.
As a simple analogy, a newly broken leg causes pain and most people so affected have an entirely rational fear of walking or even bearing weight on the affected limb. The pathophysiological basis of pain caused by a fracture is well understood, and now Dr Van Ness’ work has provided considerable insight into the pathophysiology of PEM. Not only do his findings give a clearer understanding of this devastating symptom of ME but they also effectively dispose of the argument that ME patients have “exercise phobia” or indeed that the disease is caused by patients wrongly believing they are physically ill.
Unfortunately, promotion of the doctrine that ME/CFS has a psychological basis continues to be disseminated by the inappropriately named “Science” Media Centre. They are not, in respect of ME, disseminating science at all, and continue to promote scientifically unsustainable and disproven theory, simultaneously ignoring proper scientific evidence. Sadly this is not an abstruse controversy, and patients whose genuine incapacity continues to be attributed to the psychological paradigm suffer enormously. I regard this as morally indefensible.
W.R.C.Weir FRCP, FRCP (Edin), Consultant Physician, 10 Harley Street, London W1G 9PF Competing interests: No competing interests20 January 2015William RC WeirConsultant Physician10 Harley St London W1G 9PF
Monday, January 19, 2015
Prof Edwards: an unblinded trial such as PACE simply does not provide useful information
@BMJ: Re: Tackling fears about exercise is important for ME treatment:
I am a retired academic physician and biomedical scientist who has become involved in advising on research directed at ME/CFS because of specific relevant expertise in therapeutic trials. This condition presents particularly severe methodological issues in trials because the desired primary endpoint is subjective and even supportive secondary endpoints are not as objective as one would wish. In this context, an unblinded trial such as PACE is simply uninterpretable. It does not provide useful information on which to base clinical protocols.
There appear to have been a number of additional methodological problems with the trial, but those aside, the basic design does not allow of sufficient scientific rigour. A large number of patients are concerned that the trial should be used as a basis for recommending treatment and I think they are right to be concerned.
As far as I can see all that the PACE trial can tell us about is apparent changes in patients' beliefs about their illness. The trial appears to be based on the supposition that these may be unrealistic beliefs, so it is hard to see why a shift in these beliefs should be considered even relevant unless there is some way of establishing that they become more realistic - which there is not. (Other measures suggest that any change was unwarranted.) We cannot even be sure that these are patients' beliefs since an important part of the 'placebo' phenomenon (that demands blinded controls which are here impossible) is likely to be a response designed to please a therapist, perhaps because of fear of being discharged from care if not perceived as grateful. The fact that perceptions can modify behaviour seems to be acknowledged by the aims and design of the present study.
I do not treat people with this illness and have no other personal interest other than feeling that I may be of use in encouraging useful research. Apart from anything else I am saddened to see poor data of this sort being used in a way that will perpetuate the lack of trust between patients and their carers. The patients are very aware of the weaknesses of the study and I am surprised that those designing the study are not equally aware. Competing interests: No competing interests
18 January 2015 Jonathan CW Edwards Professor of Medicine, Emeritus University College London Gower St, London WC1
I am a retired academic physician and biomedical scientist who has become involved in advising on research directed at ME/CFS because of specific relevant expertise in therapeutic trials. This condition presents particularly severe methodological issues in trials because the desired primary endpoint is subjective and even supportive secondary endpoints are not as objective as one would wish. In this context, an unblinded trial such as PACE is simply uninterpretable. It does not provide useful information on which to base clinical protocols.
There appear to have been a number of additional methodological problems with the trial, but those aside, the basic design does not allow of sufficient scientific rigour. A large number of patients are concerned that the trial should be used as a basis for recommending treatment and I think they are right to be concerned.
As far as I can see all that the PACE trial can tell us about is apparent changes in patients' beliefs about their illness. The trial appears to be based on the supposition that these may be unrealistic beliefs, so it is hard to see why a shift in these beliefs should be considered even relevant unless there is some way of establishing that they become more realistic - which there is not. (Other measures suggest that any change was unwarranted.) We cannot even be sure that these are patients' beliefs since an important part of the 'placebo' phenomenon (that demands blinded controls which are here impossible) is likely to be a response designed to please a therapist, perhaps because of fear of being discharged from care if not perceived as grateful. The fact that perceptions can modify behaviour seems to be acknowledged by the aims and design of the present study.
I do not treat people with this illness and have no other personal interest other than feeling that I may be of use in encouraging useful research. Apart from anything else I am saddened to see poor data of this sort being used in a way that will perpetuate the lack of trust between patients and their carers. The patients are very aware of the weaknesses of the study and I am surprised that those designing the study are not equally aware. Competing interests: No competing interests
18 January 2015 Jonathan CW Edwards Professor of Medicine, Emeritus University College London Gower St, London WC1
When exercising makes you ill
By Jill Stratton, theguardian:
"Am I fearful of exercising? Yes, if I am honest. But it’s not that I am afraid of doing the exercises: I WANT to be able to walk and to go shopping. But I also know the physical suffering I feel after pushing myself too hard. It’s hard not to be afraid of feeling so ill that you can’t raise your head off the pillow for days on end. Reports like those seen this week do nothing other than belittle the battle we go through every day, and make people question us and our commitment to getting better."
"Am I fearful of exercising? Yes, if I am honest. But it’s not that I am afraid of doing the exercises: I WANT to be able to walk and to go shopping. But I also know the physical suffering I feel after pushing myself too hard. It’s hard not to be afraid of feeling so ill that you can’t raise your head off the pillow for days on end. Reports like those seen this week do nothing other than belittle the battle we go through every day, and make people question us and our commitment to getting better."
Saturday, January 17, 2015
Are all the crappy exercise articles a symptom of the devastating PACE Trial syndrome ??
Are all the recent crappy exercise articles a symptom of the devastating PACE Trial syndrome ??
It certainly seems so that right now there is a fairly large number of psychiatrists in the UK who suffer from the very debilitating PACE Trial syndrome, aka Panic Attacks in CBT Extremists ...
It certainly seems so that right now there is a fairly large number of psychiatrists in the UK who suffer from the very debilitating PACE Trial syndrome, aka Panic Attacks in CBT Extremists ...
Exercise physiologist Prof VanNess responds to the preposterous idea that ME patients remain severely, physically debilitated due to an irrational 'fear of exercise'
Permission has been granted to share this letter below, a highly respected and highly educated response on the preposterous idea that ME patients remain severely, physically debilitated due to an irrational 'fear of exercise.'
Due to recent inaccurate media reporting of a misleading study, performed by some notorious UK psychiatrists, I asked for the opinion of a world leading expert in the area of exercise science.
THANK YOU for your support ProfessorMark VanNess Sr. VanNess! Letter below.
The lives of patients could be so dramatically improved and even saved if some very powerful psychiatrists would just end their agenda to literally crucify us and sit down to study the biomedical evidence. This post contains just one example, there are thousands more.
"Dear Joan,
I was saddened to see the press releases regarding the ME/CFS studies from Kings College London. It seems to me they’ve once again missed important nuances of the disease. Nearly all ME/CFS sufferers would either avoid or drop out of any experiment that employed exercise as a treatment because they know it exacerbates symptoms. The remaining subjects would either be very high functioning or consist of fatigued individuals that were incorrectly diagnosed as ME/CFS. Our studies clearly show that dynamic exercise like walking or jogging exacerbates symptoms associated with ME/CFS.
Fear and avoidance of what worsens symptoms is a natural defense mechanism against a harmful stimulus. In fact, many researchers here in the U.S. utilize graded aerobic exercise as a tool to worsen and amplify ME/CFS symptoms – not as a treatment meant to be beneficial. The therapeutic interventions we use are meant to improve quality of life for ME/CFS patients. These interventions focus primarily on strengthening muscles and improving range of motion; activities that get energy from normally functioning anaerobic metabolic mechanisms rather than impaired aerobic energy pathways. We even provide tools like heart rate monitors to help patients avoid significant aerobic exertion. Fear of exercise is an understandable response in ME/CFS. For a patient with ME/CFS the fear of exercise is a reasonable, knowledgeable, and learned response to a noxious stimulus.
If ME/CFS patients could exercise away their symptoms they most certainly would, regardless of the pain. But that is not the case. Our exercise physiologists carefully avoid aerobic exercise (which worsens the pathologies) and focus activity programs that utilize intact metabolic pathways with strength training and recumbent stretching (that help alleviate symptoms). These exercise recommendations are consistent with our understanding of ME/CFS pathology.
We would all hope that ME/CFS was viewed with attention given to immunological, metabolic, cardiovascular and neuroendocrinological dysfunction that has been demonstrated with previous research.
Good luck to you and your organization as you help us all accurately portray this illness.
Sincerely,
J. Mark VanNess, Ph.D. Professor; Departments of Health and Exercise Science and Bioengineering University of the Pacific Stockton, California, USA" DVDs of the full professional's education event in Stormont Buildings, Belfast are available from N&M support group or Professor VanNess single presentation may be viewed at this link from the Bristol event.. http://m.youtube.com/watch?v=q_cnva7zyKM
Due to recent inaccurate media reporting of a misleading study, performed by some notorious UK psychiatrists, I asked for the opinion of a world leading expert in the area of exercise science.
THANK YOU for your support ProfessorMark VanNess Sr. VanNess! Letter below.
The lives of patients could be so dramatically improved and even saved if some very powerful psychiatrists would just end their agenda to literally crucify us and sit down to study the biomedical evidence. This post contains just one example, there are thousands more.
"Dear Joan,
I was saddened to see the press releases regarding the ME/CFS studies from Kings College London. It seems to me they’ve once again missed important nuances of the disease. Nearly all ME/CFS sufferers would either avoid or drop out of any experiment that employed exercise as a treatment because they know it exacerbates symptoms. The remaining subjects would either be very high functioning or consist of fatigued individuals that were incorrectly diagnosed as ME/CFS. Our studies clearly show that dynamic exercise like walking or jogging exacerbates symptoms associated with ME/CFS.
Fear and avoidance of what worsens symptoms is a natural defense mechanism against a harmful stimulus. In fact, many researchers here in the U.S. utilize graded aerobic exercise as a tool to worsen and amplify ME/CFS symptoms – not as a treatment meant to be beneficial. The therapeutic interventions we use are meant to improve quality of life for ME/CFS patients. These interventions focus primarily on strengthening muscles and improving range of motion; activities that get energy from normally functioning anaerobic metabolic mechanisms rather than impaired aerobic energy pathways. We even provide tools like heart rate monitors to help patients avoid significant aerobic exertion. Fear of exercise is an understandable response in ME/CFS. For a patient with ME/CFS the fear of exercise is a reasonable, knowledgeable, and learned response to a noxious stimulus.
If ME/CFS patients could exercise away their symptoms they most certainly would, regardless of the pain. But that is not the case. Our exercise physiologists carefully avoid aerobic exercise (which worsens the pathologies) and focus activity programs that utilize intact metabolic pathways with strength training and recumbent stretching (that help alleviate symptoms). These exercise recommendations are consistent with our understanding of ME/CFS pathology.
We would all hope that ME/CFS was viewed with attention given to immunological, metabolic, cardiovascular and neuroendocrinological dysfunction that has been demonstrated with previous research.
Good luck to you and your organization as you help us all accurately portray this illness.
Sincerely,
J. Mark VanNess, Ph.D. Professor; Departments of Health and Exercise Science and Bioengineering University of the Pacific Stockton, California, USA" DVDs of the full professional's education event in Stormont Buildings, Belfast are available from N&M support group or Professor VanNess single presentation may be viewed at this link from the Bristol event.. http://m.youtube.com/watch?v=q_cnva7zyKM
Friday, January 16, 2015
ME patient MP Brynmor John KILLED by graded exercise therapy (GET)
@ wikipedia.org::
Brynmor Thomas John (18 April 1934 – 13 December 1988) was a British Labour politician.
John was Member of Parliament forPontypridd in South Wales from 1970 until he died in 1988 at the age of 54. During the Labour government of 1974 to 1979, he was a junior Defence minister for the Royal Air Force (RAF) (1974–1976) and a Home Office minister (1976–1979).
The circumstances of his later life and premature death are cited by physicians who believe the overwhelming evidence for the biological etiology of chronic fatigue syndrome.
Brynmor John had been diagnosed with the illness, and died suddenly immediately after exiting the House of Commons gym. He had been following an exercise regime based on what is argued to be unfounded and unethical medical advice: that sufferers may exercise their way toward a cure for the illness.
Brynmor Thomas John (18 April 1934 – 13 December 1988) was a British Labour politician.
John was Member of Parliament forPontypridd in South Wales from 1970 until he died in 1988 at the age of 54. During the Labour government of 1974 to 1979, he was a junior Defence minister for the Royal Air Force (RAF) (1974–1976) and a Home Office minister (1976–1979).
The circumstances of his later life and premature death are cited by physicians who believe the overwhelming evidence for the biological etiology of chronic fatigue syndrome.
Brynmor John had been diagnosed with the illness, and died suddenly immediately after exiting the House of Commons gym. He had been following an exercise regime based on what is argued to be unfounded and unethical medical advice: that sufferers may exercise their way toward a cure for the illness.
Thursday, January 15, 2015
PACE Trial's Prof Peter White: "CFS patients without a comorbid psychiatric disorder do not have an exercise phobia"
@ PubMed::
J Psychosom Res. 2005 Apr;58(4):367-73.Is the chronic fatigue syndrome an exercise phobia? A case control study.Gallagher AM 1, Coldrick AR , Hedge B , Weir WR , White PD .Author information
Abstract
OBJECTIVE: The aim of this study was to test whether patients with chronic fatigue syndrome (CFS) have an exercise phobia, by measuring anxiety-related physiological and psychological reactions to ordinary activity and exercise.
METHODS: Patients and healthy but sedentary controls were assessed over 8 h of an ordinary day, and before, during and after an incremental exercise test on a motorised treadmill. To avoid confounding effects, those with a comorbid psychiatric disorder were excluded. Heart rate, galvanic skin resistance (GSR) and the amount of activity undertaken were measured, along with state and trait measures of anxiety.
RESULTS: Patients with CFS were more fatigued and sleep disturbed than were the controls and noted greater effort during the exercise test. No statistically significant differences were found in either heart rate or GSR both during a normal day and before, during and after the exercise test. Patients with CFS were more symptomatically anxious at all times, but this did not increase with exercise.
CONCLUSION: The data suggest that CFS patients without a comorbid psychiatric disorder do not have an exercise phobia.
PMID: * 15992572 * [PubMed - indexed for MEDLINE] *
J Psychosom Res. 2005 Apr;58(4):367-73.Is the chronic fatigue syndrome an exercise phobia? A case control study.Gallagher AM 1, Coldrick AR , Hedge B , Weir WR , White PD .Author information
Abstract
OBJECTIVE: The aim of this study was to test whether patients with chronic fatigue syndrome (CFS) have an exercise phobia, by measuring anxiety-related physiological and psychological reactions to ordinary activity and exercise.
METHODS: Patients and healthy but sedentary controls were assessed over 8 h of an ordinary day, and before, during and after an incremental exercise test on a motorised treadmill. To avoid confounding effects, those with a comorbid psychiatric disorder were excluded. Heart rate, galvanic skin resistance (GSR) and the amount of activity undertaken were measured, along with state and trait measures of anxiety.
RESULTS: Patients with CFS were more fatigued and sleep disturbed than were the controls and noted greater effort during the exercise test. No statistically significant differences were found in either heart rate or GSR both during a normal day and before, during and after the exercise test. Patients with CFS were more symptomatically anxious at all times, but this did not increase with exercise.
CONCLUSION: The data suggest that CFS patients without a comorbid psychiatric disorder do not have an exercise phobia.
PMID: * 15992572 * [PubMed - indexed for MEDLINE] *
Wednesday, January 14, 2015
NIH P2P states that the Oxford Criteria are flawed, HARMFUL and should be retired, meaning that the PACE Trial should be RETRACTED
"38 The Oxford criteria (published in the Journal of the Royal 39 Society of Medicine in February 1991) are flawed and include people with other conditions, 40 confounding the ability to interpret the science." "378 Specifically, continuing to use the Oxford definition may impair progress and cause 379 harm. Thus, for needed progress to occur we recommend (1) that the Oxford definition be 380 retired"
SOURCE: https://prevention.nih.gov/docs/programs/mecfs/ODP-MECFS-DraftReport.pdf
Research / trials like the PACE trial which used the Oxford Criteria should therefore be retired together with the Oxford Criteria. Meaning that the PACE Trial should therefore be RETRACTED !!!
SOURCE: https://prevention.nih.gov/docs/programs/mecfs/ODP-MECFS-DraftReport.pdf
Research / trials like the PACE trial which used the Oxford Criteria should therefore be retired together with the Oxford Criteria. Meaning that the PACE Trial should therefore be RETRACTED !!!
Tuesday, January 13, 2015
Ampligen improves Low Natural Killer (NK) Activity across the Chronic Fatigue Syndrome (CFS) disease spectrum
P HILADELPHIA, Jan. 12, 2015 (GLOBE NEWSWIRE) :: -- Hemispherx Biopharma, Inc. (NYSE MKT:HEB) (the "Company" or "Hemispherx"), reported today that it has conducted new "in vitro" studies of natural killer (NK) cells obtained from CFS patients in conjunction with a comprehensive review of the medical literature to determine the relative incidence of NK cell functional deficiencies in CFS disease. This review indicates that low NK cell cytotoxicity (NKCC) has been consistently reported in CFS patients compared to normal controls. In the new laboratory studies, Ampligen® (rintatoliod), an experimental therapeutic, was found to increase "in vitro" NK activity utilizing cells from CFS patient donors. The authors of the new report are all affiliated with Hemispherx.
NK cells are an important component of the innate immune response and may play an important role as a surveillance mechanism against viruses, other microbial pathogens, and tumor cells (Herberman", et al". Science 1981; 214:24-30). CFS is a debilitating disorder, characterized by disabling fatigue, flu-like symptoms, recurrent infections, and an apparent increased incidence of certain cancers, including lymphomas and brain tumors (Levine, "et al". Ann Epidemiol 1998;8:245-249). The vast majority (88%) of published studies (15 of 17) evaluating NKCC in patients meeting Centers for Disease Control (CDC) disease criteria for CFS concluded that CFS is associated with a reduction in NKCC compared to healthy controls. Two of the studies that did not find a difference in NKCC between CFS patients and normal controls appear to contain design flaws, which may have influenced results, for example, including the exclusion of CFS patients sick for 10 years or longer. Notably, studies at the University of Miami (176 CFS patients) found a range of 2 to 25 years from onset of CFS symptoms with an average of 10 years (Fletcher, "et al". PLoS One 2010; 5(5):e10817).
The medical literature indicates that the mean percent decrease in NKCC for the CFS population as defined using the CDC 1988 diagnostic criteria is significantly greater than that for the CFS patients defined by the CDC 1994 diagnostic criteria (the CDC 1988 criteria require more symptomatology to meet the requirements for a CFS diagnosis). Multiple published studies presented data, which support a relationship between a lower NKCC and a higher level of CFS symptom severity.
Ampligen® (rintatolimod), an experimental therapeutic, increased mean NK cell activity "in vitro" over 100% in the fifteen (15) CFS patients who donated NK cells. The mean age of the subject population was 48 years and two-thirds of the subjects were female. The observed NKCC increase was achieved with concentrations of Ampligen® achievable with a standard clinical treatment regimen of 400 mg given twice weekly. More than 100,000 doses have been given clinically, principally to CFS patients.
Historically, Hemispherx's double-blind, placebo-controlled and open-label clinical trials in CFS have emphasized quantitative measures of increased physical performance. For example, in a Phase III trial comparing twice weekly IV Ampligen® vs. placebo conducted in 234 subjects with long-standing debilitating CFS, the primary endpoint was intra-patient change from baseline at week 40 in exercise tolerance (ET). Subjects receiving Ampligen® for 40 weeks improved intra-patient placebo adjusted ET 21.3% from baseline in an intent-to-treat analysis. Correction for subjects with reduced dosing compliance increased placebo adjusted improvement to 28% (p=0.022) (Strayer, "et al". PLoS ONE 7(3):e31334. doi:10.1371/journal.pone.0031334).
The improvement observed represented approximately twice the minimum considered medically significant by regulatory agencies. An FDA Advisory Committee, convened in December 2012, when asked "Is the safety profile of Ampligen® adequate for approval for the treatment of CFS?", the "Yes" vote was 8, and the "No" vote was 5. When asked has the application "provided sufficient efficacy and safety data to support marketing of Ampligen® for the treatment of chronic fatigue syndrome?", the "Yes" vote was 5 and the "No" vote was 8. Thereafter, the Agency declined to approve the marketing application. Subsequently, the Company has been in dialogue with the Agency as well as selected regulatory authorities worldwide regarding potential paths forward to advance the experimental product for potential treatment of severe CFS. The evidence that severity of CFS is associated with progressive derangement of immune surveillance mediated by NK cells may afford a new path to identify opportunities for CFS therapeutic intervention. While NK studies were not systematically performed in the earlier well-controlled clinical study cited in the PLoS One peer-reviewed publication, improvements in vitality score, Activities of Daily Living score, and reduction in concomitant medications usage were observed. Quality-of-life improvements may be sequelae of improved immunosurveillance.
- See more at: http://globenewswire.com/news-release/2015/01/12/696686/10115028/en/Low-Natural-Killer-NK-Activity-Observed-Across-the-Chronic-Fatigue-Syndrome-CFS-Disease-Spectrum.html#sthash.6L3eBJ2q.dpuf
Friday, January 9, 2015
Prof Ronald Davis: I don't think people understand how horrible this disease is
Miriam E. Tucker, January 08, 2015:
More
Chronic Fatigue Syndrome: Wrong Name, Real Illness
"I don't think people understand how horrible this disease is. They don't look that sick. Even my son, who is incredibly debilitated, doesn't look sick," Dr Davis told Medscape Medical News.
In his new position as ME/CFS scientific advisory board director of the Open Medicine Institute, Dr Davis has recruited Nobel laureates James D. Watson, PhD, and Mario R. Capecchi, PhD, and other esteemed scientists as advisors to create what he envisions as a collaborative ME/CFS research effort akin to the Human Genome Project.
"I think it will yield if we get sufficient funding, quite frankly. It may be a tough nut to crack...I'm looking at this long-term. I don't like the long-term because my son is ill, but I'm realizing this won't be temporary," Dr Davis told Medscape Medical News.
Numerous physical abnormalities have been identified in ME/CFS patients, with stronger biological signals seen in studies measuring response to exercise[3] that differentiate patients from controls and far exceed the effects of mere deconditioning, experts say.
Such evidence includes significantly reduced oxygen consumption and workload for ME/CFS patients after treadmill tests,[4] and altered gene expression compared with controls following moderate exercise.[5]
Other biological evidence includes a recent finding of bilateral white matter atrophy in ME/CFS patients compared with controls,[6] several studies documenting significant decreases in natural killer cell cytotoxic activity, and increased levels of multiple proinflammatory cytokines.[7]
A highly significant elevation in non-Hodgkin lymphoma—which, like ME/CFS, has been linked to Epstein-Barr virus[8]—was found among ME/CFS patients aged 66-99 years in a National Cancer Institute study of data from the Surveillance, Epidemiology, and the End Results (SEER) and Medicare registries of approximately 1.2 million cancer cases and 100,000 controls, with an odds ratio of 1.29 andP value of .0000017.[9]
In a novel study of 165 consecutive patients with ME/CFS who underwent upper gastrointestinal endoscopies and antrum biopsies, 135/165 (82%) stained positive for enterovirus viral capsid protein 1 compared with just 7/34 (20%) of controls (P ≤ .001).[10]
And in another novel finding that speaks to the phenomenon's heterogeneity, approximately 2% of ME/CFS cases were found to have chromosomally integrated human herpesvirus-6 (HHV-6) as compared to just 0.2%-0.85% of the general population,[11] suggesting a specific etiology for a small proportion of cases.[12]
Responses to treatment in randomized, blinded, placebo-controlled trials also point to biological causation, including improvements with valganciclovir in a study of ME/CFS patients with elevated antibody titers to HHV-6 and Epstein-Barr virus,[13] and a preliminary trial (now being repeated in a larger patient group) in which ME/CFS patients responded to rituximab, a monoclonal antibody that destroys immune system B cells and is approved in the United States for the treatment of non-Hodgkin lymphoma and other B-cell–mediated conditions.[14]
Thursday, January 8, 2015
The Countess of Mar: people with ME/CFS are treated abominably by members of supposedly caring professions
Countess of Mar tells House of Lords that people with ME/CFS are treated “abominably” by caring professions | Lords debate | 7 January 2015
The Countess of Mar, who chairs the Forward ME Group of ME charities, made the following contribution during a short debate on NHS: Medical Competence and Skill in the House of Lords yesterday evening (7 January 2014).
By meassociation, January 7, 2015:
"My Lords, I, too, am grateful to the noble Lord, Lord Parekh, for introducing this Question for Short Debate this evening. I encounter almost daily cases where people with ME/CFS and others with medically unexplained physical symptoms, known as MUPS, are treated abominably by members of supposedly caring professions. For example—and it is by no means an isolated example—a young man of 17 had problems with tolerating foods since he was a small baby. Standard tests could provide no clear reason. By the time he was 16 he was diagnosed by consultant paediatricians at both St Thomas’ and Great Ormond Street hospitals as being extremely reactive to almost all foods and was restricted to a prescribed liquid diet, as none of the consultants had any other resolution. Eventually he was admitted to an environmental medicine polyclinic, where I am also treated, where he has been treated with low-dose immunotherapy and nutritional supplementation. Over a period of a few months, from being able to tolerate no foods he is now eating 33 different foods with few problems.
On his 17th birthday, he went out with some friends for a meal and during that night he developed very severe abdominal pain and, after his GP had refused to visit, his mother managed to get him to the polyclinic. There acute appendicitis was diagnosed and immediate admission to his local hospital in Oxford was recommended. The paediatric consultant’s first response was to ask, “What has the mother of this boy done now?”. On arrival at the hospital the consultant informed the mother that he knew that nothing was wrong with the boy but he would keep him for observation. He scheduled a scan and then went home for the weekend. The boy was left screaming and in acute pain for a further 24 hours, without pain relief or other medication. By the time he was operated on, his appendix had perforated, making treatment much more complex than necessary. To this day, despite all the evidence of the extremity of his reactions to foods and the failure of our two flagship hospitals to treat this young man’s condition, his Oxford consultant insists that there is nothing wrong with him, that he should stop the polyclinic treatment and that he should eat a normal diet, apparently because standard allergy tests do not provide confirmation. This results in great stress and distress to the boy and his mother. In fact, substantive evidence in numerous publications proves that the safety and efficacy of immunological changes after treatment with oral immunotherapy for cow’s milk allergy, nut allergy, allergic rhinitis, wheat desensitisation and other specific foods and chemicals is well recognised. The treatments are validated and are neither experimental nor complementary medicine.
I have long wondered why there should be such particularly unreasonable treatment for people with MUPS and I have come to several conclusions. Medicine is supposed to be a very rewarding profession, whether the practitioner is a doctor, nurse or ancillary worker. The patient consults, the doctor diagnoses and prescribes and the patient gets better or at least no worse. On the occasions when the patient’s condition deteriorates and he or she dies, it is usually because the illness is well understood and this is part of a normal process. This is clearly not the case with MUPS. Modern doctors are highly reliant on technology. Test reports taken at face value can dominate the diagnostic process without taking into account factors such as clinical presentation and history and the possibility of false positive or negative results. Additionally, medical practice has become a cost-benefit calculation, with treatments either enforced or rejected on this basis rather than on patient need. I have the distinct impression that, because some doctors and other medical practitioners fail to understand some disease processes, they grow impatient, even intolerant, when their patient fails to respond and then they blame the patient. The skills that medical practitioners acquire during training are essential to good practice for the rest of their working lives. Unfortunately, the natural scientific curiosity of the profession seems to be stifled in the course of their training. There are still far too many medical professionals who hold that MUPS are “all in the mind” and that patients simply need to pull themselves together, perhaps with the help of a little cognitive behavioural therapy. Somehow, current research findings are not filtering down to doctors who deal with patients.
Are the time constraints on appointments and the dependence on technology reducing a doctor’s ability to listen and to communicate effectively? Is it because GPs and consultants work such long hours that they have neither the time nor the energy to do their own research on problems concerning chronically ill patients? Is it because complex investigations cost money and initial investigations come back as being within normal ranges that the current view is that further tests would not be cost effective? Or is it because doctors have become so demoralised that they can see no reason to go the extra mile on behalf of their patients?
The NHS is excellent for acute management of illness because clear guidelines are usually followed assiduously by all staff. Chronic complex conditions are problematic because clinicians seem to deal with only one symptom at a time. Specialisation means that patients with ME/CFS are rarely looked at holistically. I have heard of one doctor’s surgery with a notice on the door which reads, “One complaint at a time”. The trouble is that frequently it is the combination of symptoms which will point to a clear diagnosis.
I have confined my speech to one aspect of competence and skill, one which falls far short of the excellence that should be the norm. I am interested to hear how the Minister proposes to improve the position for some 250,000 patients with ME/CFS and the many more who have other medically unexplained symptoms.
_________________________________________
The debate was answered by the Parliamentary Under Secretary of State for Health, Earl
The Countess of Mar, who chairs the Forward ME Group of ME charities, made the following contribution during a short debate on NHS: Medical Competence and Skill in the House of Lords yesterday evening (7 January 2014).
By meassociation, January 7, 2015:
"My Lords, I, too, am grateful to the noble Lord, Lord Parekh, for introducing this Question for Short Debate this evening. I encounter almost daily cases where people with ME/CFS and others with medically unexplained physical symptoms, known as MUPS, are treated abominably by members of supposedly caring professions. For example—and it is by no means an isolated example—a young man of 17 had problems with tolerating foods since he was a small baby. Standard tests could provide no clear reason. By the time he was 16 he was diagnosed by consultant paediatricians at both St Thomas’ and Great Ormond Street hospitals as being extremely reactive to almost all foods and was restricted to a prescribed liquid diet, as none of the consultants had any other resolution. Eventually he was admitted to an environmental medicine polyclinic, where I am also treated, where he has been treated with low-dose immunotherapy and nutritional supplementation. Over a period of a few months, from being able to tolerate no foods he is now eating 33 different foods with few problems.
On his 17th birthday, he went out with some friends for a meal and during that night he developed very severe abdominal pain and, after his GP had refused to visit, his mother managed to get him to the polyclinic. There acute appendicitis was diagnosed and immediate admission to his local hospital in Oxford was recommended. The paediatric consultant’s first response was to ask, “What has the mother of this boy done now?”. On arrival at the hospital the consultant informed the mother that he knew that nothing was wrong with the boy but he would keep him for observation. He scheduled a scan and then went home for the weekend. The boy was left screaming and in acute pain for a further 24 hours, without pain relief or other medication. By the time he was operated on, his appendix had perforated, making treatment much more complex than necessary. To this day, despite all the evidence of the extremity of his reactions to foods and the failure of our two flagship hospitals to treat this young man’s condition, his Oxford consultant insists that there is nothing wrong with him, that he should stop the polyclinic treatment and that he should eat a normal diet, apparently because standard allergy tests do not provide confirmation. This results in great stress and distress to the boy and his mother. In fact, substantive evidence in numerous publications proves that the safety and efficacy of immunological changes after treatment with oral immunotherapy for cow’s milk allergy, nut allergy, allergic rhinitis, wheat desensitisation and other specific foods and chemicals is well recognised. The treatments are validated and are neither experimental nor complementary medicine.
I have long wondered why there should be such particularly unreasonable treatment for people with MUPS and I have come to several conclusions. Medicine is supposed to be a very rewarding profession, whether the practitioner is a doctor, nurse or ancillary worker. The patient consults, the doctor diagnoses and prescribes and the patient gets better or at least no worse. On the occasions when the patient’s condition deteriorates and he or she dies, it is usually because the illness is well understood and this is part of a normal process. This is clearly not the case with MUPS. Modern doctors are highly reliant on technology. Test reports taken at face value can dominate the diagnostic process without taking into account factors such as clinical presentation and history and the possibility of false positive or negative results. Additionally, medical practice has become a cost-benefit calculation, with treatments either enforced or rejected on this basis rather than on patient need. I have the distinct impression that, because some doctors and other medical practitioners fail to understand some disease processes, they grow impatient, even intolerant, when their patient fails to respond and then they blame the patient. The skills that medical practitioners acquire during training are essential to good practice for the rest of their working lives. Unfortunately, the natural scientific curiosity of the profession seems to be stifled in the course of their training. There are still far too many medical professionals who hold that MUPS are “all in the mind” and that patients simply need to pull themselves together, perhaps with the help of a little cognitive behavioural therapy. Somehow, current research findings are not filtering down to doctors who deal with patients.
Are the time constraints on appointments and the dependence on technology reducing a doctor’s ability to listen and to communicate effectively? Is it because GPs and consultants work such long hours that they have neither the time nor the energy to do their own research on problems concerning chronically ill patients? Is it because complex investigations cost money and initial investigations come back as being within normal ranges that the current view is that further tests would not be cost effective? Or is it because doctors have become so demoralised that they can see no reason to go the extra mile on behalf of their patients?
The NHS is excellent for acute management of illness because clear guidelines are usually followed assiduously by all staff. Chronic complex conditions are problematic because clinicians seem to deal with only one symptom at a time. Specialisation means that patients with ME/CFS are rarely looked at holistically. I have heard of one doctor’s surgery with a notice on the door which reads, “One complaint at a time”. The trouble is that frequently it is the combination of symptoms which will point to a clear diagnosis.
I have confined my speech to one aspect of competence and skill, one which falls far short of the excellence that should be the norm. I am interested to hear how the Minister proposes to improve the position for some 250,000 patients with ME/CFS and the many more who have other medically unexplained symptoms.
_________________________________________
The debate was answered by the Parliamentary Under Secretary of State for Health, Earl
Wednesday, January 7, 2015
Why Psychiatry holds enormous Power in Society despite having NO scientific Credibility
It helps to be funded by Big Pharma
By Bruce Levine / AlterNet, January 6, 2015:
Wall Street is not the only arena where one can be completely wrong and still retain powerful influence. Influential “thought leader” psychiatrists and major psychiatry institutions, by their own recent admissions, have been repeatedly wrong about illness/disorder validity, biochemical causes and drug treatments. In several cases, they have been discovered to be on the take from drug companies, yet continue to be taken seriously by the mainstream media.
While Big Pharma financial backing is one reason psychiatry is able to retain its clout, this is not the only reason. More insidiously, psychiatry retains influence because of the needs of the larger power structure that rules us.
MORE ...
By Bruce Levine / AlterNet, January 6, 2015:
Wall Street is not the only arena where one can be completely wrong and still retain powerful influence. Influential “thought leader” psychiatrists and major psychiatry institutions, by their own recent admissions, have been repeatedly wrong about illness/disorder validity, biochemical causes and drug treatments. In several cases, they have been discovered to be on the take from drug companies, yet continue to be taken seriously by the mainstream media.
While Big Pharma financial backing is one reason psychiatry is able to retain its clout, this is not the only reason. More insidiously, psychiatry retains influence because of the needs of the larger power structure that rules us.
MORE ...
Tuesday, January 6, 2015
Man sectioned for 7 weeks has an autoimmune disease, not a mental health problem
A Norwich man today told how he ended up in a mental health unit and attempted suicide because of a disease so rare it took months for doctors to diagnose.
Ross Buggins, from Earlham, began feeling unwell in June this year and visited the doctor with vomiting and rashes.
“They said it was a bug and gave me antibiotics,” he said.
Two days later the anxiety began.
“The depression became horrendous,” he said. “It got worse and worse and ended with me trying to hang myself.”
In August, he headed off to Crete on holiday with his girlfriend to try to help his illness, but the trip ended on the A11 when he tried to climb out of the car on the way to the airport.
“I was so paranoid, I thought we were going to die in a plane crash,” he said.
The police escorted him back to Norwich and his family decided to call the crisis team at Norfolk & Suffolk Foundation Trust (NSFT).
On August 30 he was sectioned.
But Mr Buggins didn’t have mental health problems. He had a disease called anti NMDA receptor encephalitis.
“It was a living hell,” he said.
The 30-year-old was taken to the Priory Hospital in Nottingham, as there were no beds in East Anglia. But he tried to escape and was moved to Cheadle Royal Hospital in Manchester.
On September 5, he was moved to a secure ward at Hellesdon Hospital where he spent seven weeks. Back in Norwich, he was given more medication to treat his depression and anxiety.
“I don’t remember a single thing,” he said. “All I can go by is what family and friends have recorded. But, I was a mess.”
He eventually collapsed at Hellesdon as his sodium levels were so low from the amount of drugs he was taking.
Mr Buggins was transferred to the Norfolk & Norwich University Hospital (N&N) for treatment.
It was there a doctor realised he may not have a psychological problem, but a neurological disease.
A sleep specialist at the hospital was curious that Mr Buggins kept dropping into coma-like sleeps during the day.
He carried out a blood test for anti NMDA receptor encephalitis.
It took three weeks for the results to come back, but they showed that he had the rare autoimmune condition which was only discovered in 2007.
The treatment started the next day and five days later he was discharged from hospital. Two days after that, the section was lifted and by November 24 he had returned to work as a partner at Shore Tech Systems in Norwich.
“Obviously my family have been through hell as they can remember the whole ordeal.
“What is scary is that there are probably other people out there in the mental health system who have this disease and are not really psychotic, just presenting those same symptoms,” he said.
• Have you got a health story? Email newsdesk@archant.co.uk
Sunday, January 4, 2015
Court rules: Hepatitis B vaccine caused chronic fatigue syndrome
By MB @ http://therefusers.com/refusers-newsroom/hepatitis-b-vaccine-caused-chronic-fatigue-syndrome-us-court/#.VKlUL7tw2Lv
The United States Court of Federal Claims has ruled that ‘a dose of the hepatitis B vaccination caused [a patient] to develop chronic fatigue syndrome.’ The patient was awarded $1.1 million for medical expenses in the first year after this judgment and an annuity to pay for life care expenses for subsequent years.
This court judgment should be a clear warning to anyone considering receiving the hepatitis B vaccine that your life could be destroyed by this shot. Pregnant women should be aware that most hospitals will give this vaccine to your child without your permission when they take the newborn baby away from you within hours of birth. For background on the hepatitis B vaccine (how it came to be recommended for babies by the CDC and an analysis of hep B vaccine adverse events reported to the FDA) see my Congressional Testimony.
The Merck VARIVAX hepatitis B vaccine package insert adverse reactions section contains fatiguealong with multiple sclerosis, seizure, encephalitis, lupus and arthritis.
If someone insists you or your child must get the hepatitis B vaccine, you have the right to refuse. You might suggest that they stick it up their own rear end. Merck RECOMBIVAX HB HEPATITIS B VACCINE (RECOMBINANT) PACKAGE INSERT
ADVERSE REACTIONS
Incidence Equal To or Greater Than 1% of Injections:
BODY AS A WHOLE
The most frequent systemic complaints includefatigue/weakness Incidence Less Than 1% of Injections Nervous System Guillain-Barré Syndrome; multiple sclerosis; exacerbation of multiple sclerosis; myelitis including transverse myelitis; seizure; febrile seizure; peripheral neuropathy including Bell’s Palsy; radiculopathy; herpes zoster; migraine; muscle weakness; hypesthesia; encephalitis Musculoskeletal System Arthritis Immune System Systemic lupus erythematosus (SLE); lupus-like syndrome ************************************ ************************************ FULL judgement @ http://www.uscfc.uscourts.gov/sites/default/files/MORAN.ID042613.pdf
The United States Court of Federal Claims has ruled that ‘a dose of the hepatitis B vaccination caused [a patient] to develop chronic fatigue syndrome.’ The patient was awarded $1.1 million for medical expenses in the first year after this judgment and an annuity to pay for life care expenses for subsequent years.
This court judgment should be a clear warning to anyone considering receiving the hepatitis B vaccine that your life could be destroyed by this shot. Pregnant women should be aware that most hospitals will give this vaccine to your child without your permission when they take the newborn baby away from you within hours of birth. For background on the hepatitis B vaccine (how it came to be recommended for babies by the CDC and an analysis of hep B vaccine adverse events reported to the FDA) see my Congressional Testimony.
The Merck VARIVAX hepatitis B vaccine package insert adverse reactions section contains fatiguealong with multiple sclerosis, seizure, encephalitis, lupus and arthritis.
If someone insists you or your child must get the hepatitis B vaccine, you have the right to refuse. You might suggest that they stick it up their own rear end. Merck RECOMBIVAX HB HEPATITIS B VACCINE (RECOMBINANT) PACKAGE INSERT
ADVERSE REACTIONS
Incidence Equal To or Greater Than 1% of Injections:
BODY AS A WHOLE
The most frequent systemic complaints includefatigue/weakness Incidence Less Than 1% of Injections Nervous System Guillain-Barré Syndrome; multiple sclerosis; exacerbation of multiple sclerosis; myelitis including transverse myelitis; seizure; febrile seizure; peripheral neuropathy including Bell’s Palsy; radiculopathy; herpes zoster; migraine; muscle weakness; hypesthesia; encephalitis Musculoskeletal System Arthritis Immune System Systemic lupus erythematosus (SLE); lupus-like syndrome ************************************ ************************************ FULL judgement @ http://www.uscfc.uscourts.gov/sites/default/files/MORAN.ID042613.pdf
Friday, January 2, 2015
HURRAY @JeremyLaurance wins the 2015 @WesselyS PARROTING award for ...
HURRAY @JeremyLaurance wins the 2015 @WesselyS PARROTING award for IGNORING all evidence that ME/CFS is a debilitating physical illness, not a psychological one
AWARD winning “Voices from the Shadows” is now available to view on Vimeo.; https://vimeo.com/ondemand/22513/108797012 Or you can link to it from http://voicesfromtheshadowsfilm.co.uk The film shows the brave and sometimes heartrending stories of five ME patients and their carers, along with input from Dr Nigel Speight, Prof Leonard Jason and Prof Malcolm Hooper. These were filmed and edited between 2009 and 2011 by the brother and mother of an ME patient in the UK. The film shows the devastating consequences that occur when patients are disbelieved and the illness is misunderstood. Severe and lasting relapse occurs when patients are given inappropriate psychological or behavioural management: management that ignores the severe amplification of symptoms that can be caused by increased physical or mental activity or exposure to stimuli, and by further infections. (See Bristol Watershed event videos http://voicesfromtheshadowsfilm.co.uk/exercise-mecfs-event/ ) A belief in behavioural and psychological causes, particularly when ME becomes very severe and chronic, following mismangement, is still taught to medical students and healthcare professionals in the UK. As a consequence, situations similar to those shown in the film continue to occurr. ‘Voices from the Shadows’ received its premiere at the prestigious Mill Valley film festival near San Francisco in 2011, where it won the audience award for favourite international doc. The film has been shown in many countries and in different venues - from parliament buildings to cinemas, universities and homes - from the IACFS/ME conference in Ottawa 20011, to the Stanford ME /CFS Symposium 2014. The film is in English with subtitles in Swedish, Dutch, Spanish, French, Italian, Czech, German, Japanese and English. We consider this film to be unsuitable viewing for children and young people with ME. There is a rental fee of $3 to view the film for a week. Further info at http://voicesfromtheshadowsfilm.co.uk "·
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AWARD winning “Voices from the Shadows” is now available to view on Vimeo.; https://vimeo.com/ondemand/22513/108797012 Or you can link to it from http://voicesfromtheshadowsfilm.co.uk The film shows the brave and sometimes heartrending stories of five ME patients and their carers, along with input from Dr Nigel Speight, Prof Leonard Jason and Prof Malcolm Hooper. These were filmed and edited between 2009 and 2011 by the brother and mother of an ME patient in the UK. The film shows the devastating consequences that occur when patients are disbelieved and the illness is misunderstood. Severe and lasting relapse occurs when patients are given inappropriate psychological or behavioural management: management that ignores the severe amplification of symptoms that can be caused by increased physical or mental activity or exposure to stimuli, and by further infections. (See Bristol Watershed event videos http://voicesfromtheshadowsfilm.co.uk/exercise-mecfs-event/ ) A belief in behavioural and psychological causes, particularly when ME becomes very severe and chronic, following mismangement, is still taught to medical students and healthcare professionals in the UK. As a consequence, situations similar to those shown in the film continue to occurr. ‘Voices from the Shadows’ received its premiere at the prestigious Mill Valley film festival near San Francisco in 2011, where it won the audience award for favourite international doc. The film has been shown in many countries and in different venues - from parliament buildings to cinemas, universities and homes - from the IACFS/ME conference in Ottawa 20011, to the Stanford ME /CFS Symposium 2014. The film is in English with subtitles in Swedish, Dutch, Spanish, French, Italian, Czech, German, Japanese and English. We consider this film to be unsuitable viewing for children and young people with ME. There is a rental fee of $3 to view the film for a week. Further info at http://voicesfromtheshadowsfilm.co.uk "·
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