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."

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"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.

Monday, January 26, 2015

What Garfield thinks of the PACE trial and its follow up articles ...


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?

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

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

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.

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

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

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."

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 ...

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

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