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Perrin's point found !

Perrin's point found !
Greg Crowhurst 
28th February 2011


Permission to repost


It was extraordinary enough being seated around a table in the Houses of Parliament with  all the major ME Charities,  but not nearly as incredible as listening, for the first time ,  to Dr  Perrin speak . It was the Gibson Inquiry.


 I was deeply moved. This man spoke with conviction and  a diving   passion.     I was hanging on every word he said; here at last was someone refreshingly speaking sense.


This man was helping  me understand, as never before,  the multi-system dysfunction that is Severe ME.  Later on I would come  to learn much, much  more about  Raymond Perrin's extraordinary commitment to people with ME.



This is what he said  : ME " in many cases is actually a pre-viral condition with a possible virus being the last straw." 

Just let that sink in.

 We've all read Byron Hyde, we all know how  the central nervous system is profoundly involved in ME. Dr Perrin helps you appreciate how. He explained  that   different stress factors some physical, or environmental, hormonal, allergic "or via bacterial or viral infections" resulting in the accumulation of toxins in the brain and more important ,a reversal of drainage of  toxins  from the brain which leads to further accumulation.

What if Perrin is right ? What if as a result of a person's exposure to some physical, allergic,  infectious or  other  trauma ,   the result is an  overwhelming   toxic overload ?

The brain, I believe,  lacks  any lymphatic drainage system , Perrin argues  that the  only way to rid the brain of toxins, is by secondary drainage via the cerebrospinal fluid , resulting in the eventual elimination of toxins via the liver and kidneys. This , as I understand it,   is what the Perrin Technique an osteopathic approach to diagnosing and treating ME , sets out  to do. 

Alongside  cranio-sacral work, the Perrin Technique involves   manual stimulation of the fluid around the brain and the spinal cord and  lymphatic massage of the soft tissue of the chest, back, neck and head .

What  particularly impresses me so much   is that Dr Perrin is one of the  very, few practitioners who is   actively   working, hands-on,  with the most severely affected patients. He has amassed a wealth of experience in working with people with Severe ME,  for extremely short  periods over a long period of  time; the great danger of Severe ME, of course,  is of deterioration  into an even worse state of illness, which could be devastating.

Coming back from the Gibson Inquiry I was excited and hopeful for the future. However I was shocked by the negative responses that followed on the internet in regard to his work.

I cannot think of anyone , with so much to offer potentially,  who has  been so ignored, as I see it, so  unfairly  maligned. 

I write this because significantly, a study entitled "Increased Tenderness in the Left Intercostal Space in Adult patients with Myalgic Encephalomyelitis",   just published  by Puri et al (2011)   in the Journal of International Medical Research ( http://www.jimronline.net/content/full/2011/101/1562.pdf ) has  confirmed the existence of  "Perrin's Point", even if it does not reference it as such. I quote from The Perrin Technique p. 79 : "In every CFS/ME patient, whether male or female, there was a very tender area in the upper lateral region of the breast tissue, roughly 2cm superior and lateral to the left nipple."  

The study concludes that this finding may be a"clinical sign of ME, with a sensitivity of 81% and a specificity of 100%". Indeed. 

 I have  had long conversations with Ray Perrin since Gibson , all  incredibly helpful to me , in appreciating  just  how seriously  my wife's  body is malfunctioning and much more than that : why.

Retrovirues , Enteroviruses , Mitochondrial dysfunction, all of these offer tantalizing glimpses of something....... , but the overall picture is  so frustratingly patchy and bitty .

How many people with ME have  a clue what is going wrong in their 
body ? For sure, they may have ideas, but with so many systems involved, it is very difficult to gain an overall view.   Dr Perrin brilliantly, convincingly, to my mind,   offers just that.

Is he right ? Time and research will tell;  this latest study, confirming the Perrin Point,  is a huge confirmation. 


 I was right to be impressed.






Breakthrough Prayer 9pm GMT Saturday 26h February 2011


Justice for people who are disabled


His Light cannot be put out



He is the Light of the world
an immense radiant and pure light that shines so that we can all see the way; so that we can all find God in any moment and evil can never triumph. The Light of the World is present reigning triumphant over death and giving life to all through His power of Love. His radiance will always lead and guide us through any apparent darkness for where the Light of the World is no darkness or evil can really be.

Lord in your mercy hear us and help us.
We pray for justice, we pray for truth, we pray for protection from any injustice.
We pray particularly that the needs of the disabled will not be abused or go unmet in these punative economic times.
We ask that this Government think again about its policies towards disability, knowing that nothing is impossible to you Lord, in the power of united prayer. Amen.


Pace Trial : the facts at a glance :

Stonebird

Pace Trial : the facts at a glance :
Updated : 25th Feb 2011

at best, PACE is telling us that the two main therapies currently recommended by the National Institute for Health and Clinical Excellence (NICE) are only moderately effective.” Action for ME
The results of the PACE Trial may mean that patients who have genuine ME as opposed to chronic “fatigue” will continue to be denied appropriate investigation and treatment; they may be deprived of State benefits necessary for survival; their insurance claims may be rejected, and they will be condemned to an even lower quality of life.” Professor Malcolm Hooper

1.The PACE Trial reports that patients who received a six-month course of cognitive behavioral therapy (CBT) or graded exercise therapy (GET) had improvement in self-reported symptom scores at higher rates than those who were provided specialized medical care alone (SMC) or adaptive pacing
therapy (APT).


2.The PACE Trial authors acknowledge that the studied treatments were only moderately effective and that the effectiveness of behavioural treatments does not imply that the condition is psychological innature.
3.Headlines, in the Press, have touted far more conclusive results than the data support.


 4.The PACE Trial was funded by the U.K. Medical Research Council, the U.K. Department of Health and the U.K. Department for Work and Pensions.


5. There is a concern of serious conflicts of interest at the UK Department of Work and Pensions (DWP) who part-funded the PACE Trial. Like the permanent health insurance industry, the DWP has a potential financial vested interest if patients' disability can be portrayed as caused by or largely exacerbated by behavioural factors. 


6.The patient population was selected using the Oxford criteria for CFS. 3,148 patients diagnosed with CFS recruited from six CFS speciality clinics were screened to identify 641subjects who met study criteria.


7.The MRC PACE Trial excluded children and those who are severely affected. The results of any trial that excluded those who are severely affected cannot be taken seriously.


8.The PACE Trial used no objective measures of outcome to show improvement or non-improvement and relies upon participants’ subjective answers to questionnaires. This is an unscientific way to gather evidence. There can be no empirical science without objective measures – objective measures are at the heart of the scientific method.


9.Professor White and his co-Principal Investigators all have financial links with the health insurance industry. (Professor Hooper)


10. Professor Simon Wessely, who directed the PACE Clinical Trial Unit, is on record stating that CBT provides no effective treatment: in his Editorial (JAMA 19th September 2001:286:11) he stated that CBT and GET are only “modestly effective” and that neither is “remotely curative”.


11. The MRC FINE Trial (sibling of the PACE Trial) failed spectacularly. It found that “pragmatic rehabilitation” (PR, based on CBT/GET) was minimally effective in reducing fatigue and improving sleep only whilst participants were engaged in the programme and that there was no statistically significant effect at follow-up.


12. The PACE Trial selected people who met the Oxford Criteria and had a physical function score of >65. People who had psychosis, bipolar disorder, substance abuse, an organic brain disorder or eating disorder were excluded (58 people in total). No exclusions for other disorders were noted. Many people declined to assessed or to engage in a randomized treatment (n=398) (It’s possible that these people included people afraid of being assessed the GET or CBT protocols). A good number of people simply refused to be assessed (n=143). Another chunk of people (n=139) couldn’t follow the protocols for one reason or another (too sick?). 


Update : the text of the Lancet article states that participants were also assessed by “the London criteria for myalgic encephalomyelitis (version 2) requiring postexertional fatigue”  however, according to Professor Hooper,  Professor White amended the Protocol and he substituted what appears to be his own version of the “London Criteria” for the Ramsay definition.  blurred vision; double vision; increased sensitivity of hearing; increased sensitivity to noise; feeling generally awful, and muscle weakness after exercise. In contrast, Professor White’s version of the “London Criteria” specifically states on page 188 of the Full Protocol that neurological disturbances “are not necessary to make the diagnosis” and they further state that “the usual precipitation by ‘physical or mental exercise’ should be recorded but is not necessary to meet criteria”Professor White’s  “London Criteria”do not  appear to require the cardinal feature of ME to be present. This begs the question as to what disorder was being studied under the title of ME/CFS.



Response from Professor Malcom Hooper to David Jameson

13.Ahead of the PACE trail report, Peter White published a report : Psychiatric misdiagnoses in patients with chronic fatigue syndrome, which found that out of 135 participants at a PACE trail center , diagnosed with "CFS" according to the Oxford Criteria , 56% had a" co-morbid psychiatric diagnosis."


Of these :
  • 31% had a major or minor depressive episode
  • 11% had dysthymia
  • 35% had an anxiety disorder
  • 2% had a an obsessive compulsive disorder
  • 6% had post-traumatic stress disorder
  • 8% had Social Phobia
  • 15% had a "specific phobia"
14.The Oxford criteria upon which the PACE and FINE trials were based , were drawn up by psychiatrists in 1990 and broaden the 1988 Holmes CFS criteria to include all those with psychiatric “chronic fatigue" , while specifically excluding those with neurological disorders. The Oxford criteria state: "The following guidelines were agreed. There are no clinical signs characteristic of the condition. Psychiatric disorders (including depressive illness, anxiety disorders and hyperventilation syndrome) are not necessarily reasons for exclusion". (Williams 2004) . 0ne of the authors of the Oxford criteria, Professor Anthony David, clarified the issue of whether or not the Oxford criteria exclude people with neurological disorders: “British investigators have put forward an alternative, less strict, operational definition which is essentially chronic…fatigue in the absence of neurological signs, (with) psychiatric symptoms…as common associated features” (AS David; BMB 1991:47:4:966-988). 


The PACE Trial conflated two diseases that the WHO rightly categorises separately - neurological 'ME/PVFS' (ICD-10-G93.3) and psychiatric 'Fatigue Syndrome' (ICD-10-F.48.0) - and misrepresented the latter as the former. 


15. PACE Trial participants were referred from six specialist hospital CFS/M.E. clinics in Edinburgh, Oxford, Bristol and London.


16. The average age of participants was 38; 77% were female, 56% met the London criteria for ME, 47% were diagnosed with a psychiatric disorder during their clinical interview (depression, anxiety, obsessive compulsive disorder, PTSD), a high percentage of people in the study were on antidepressants (@33%), half had a history of depression, their average duration of illness was 32 months (2 ½ years) and their average body mass index (BMI) was 25.5…(normal BMI = 20-25). 


17. Participants had to be able to attend sessions at a hospital or clinic, and therefore more severely ill or homebound patients were not included. The study recruited patients age 18 and older. The average duration of illness was about three years and no subject had been ill longer than six years.


18. A high percentage of the group were confident about how successful the GET protocol would be (70%) as well as pacing (71%). They had lower confidence in CBT (57%) and low confidence in the efficacy of the specialist medical care (41%). 


19. Participants were randomly divided into 4 treatment arms :


  • 'Adapted Pacing' : a form of pacing , specifically created for this study that focused on adapting to available energy levels and systematically increasing them over time.
  • Cognitive behavioral therapy (CBT) : In the Medical Research Council’s PACE trial on CFS/ME, CBT  was “ based on the illness model of fear avoidance”; in the Guide to Mental Health in Primary Care it is described in the following terms: “This is used to change a patient’s thought processes and behaviour”, while the NICE Guideline itself describes CBT as “a psychological therapy”. CBT services were delivered by clinical psychologists and nurse therapists. They guided patients to establish a baseline of activity and rest and a regular sleep pattern, and then make collaboratively planned gradual increases in both physical and mental activity. Participants were helped to address social and emotional obstacles to improvement through problem-solving.
  • Graduated Exercise Therapy (GET) : GET was described in the MRC PACE trial on CFS as being “based on the illness model of both deconditioning and exercise avoidance”, whilst the CG53 graded exercise plan specifies that the intensity of GET should be incrementally increased (with the patient’s agreement), leading to aerobic exercise. GET services were provided by physiotherapists and one exercise physiologist. Therapeutic strategies in the GET group consisted of establishing a baseline of achievable exercise or physical activity,followed by a negotiated, incremental increase in the duration of time spent physically active. Target heart rate ranges were set when
    necessary to avoid overexertion, which eventually aimed at 30 minutes
    of light exercise five times a week.
  • Specialized Medical Treatment care At least three sessions of
    medical care were provided to all 641 participants over the six-month
    study period, and additional sessions were available as needed. These
    sessions included basic pharmacologic support, especially for sleep,
    pain and mood.

20. Participants were given 14 therapy sessions over the first 23 weeks and then one at 36 weeks. Their health was assessed at baseline, 23 weeks and 52 weeks using a wide variety of self report measures.

21. An actigraphy test that measured movement over time was included in the original protocol , but that test was dropped from the final protocol .

22. There were no biological measures reported. Studies of CBT in other conditions including HIV/AIDS and cardiovascular disease, routinely collect data on immune markers or other biological measures in attempt to understand how and why CBT works in the context of the condition studied.
23. The practitioners measured treatment effectiveness using a broad array of self-report tests including a clinical global health scale, work and social adjustment scale, 6 min walking ability, Jenkins score for disturbed sleep, anxiety and depression scales, symptoms and others.

24. Negative change was reported by six percent of the CBT group,seven percent of the GET and pacing groups, and nine percent of the group receiving specialized medical care alone.

25.Serious adverse events were lowest in the CBT and medical care alone group with four percent; highest was the pacing group with nine percent.


26. Eighty-four percent of the subjects reported post-exertional relapse at baseline and the distribution of subjects into the four groups resulted in
fairly even distribution of this symptom across the four treatment
groups.


27. At the end of the study, 63 percent of the pacing participants reported post-exertional malaise. In the group that received specialized medical care only, participants were simply counseled to avoid the extremes of rest and activity; 63 percent of them reported post-exertional malaise at follow-up. In the CBTgroup where participants were encouraged to do more than they thought they could, post-exertional relapse was reported by 49 percent of the
participants at follow-up. in the GET group, where participants were advised to gradually return to appropriate physical activities and reverse deconditioning. At the one-year mark the report of post-exertional relapse in this group had
dropped from 82 percent to 44 percent of participants.


28. The clinical global impression, CGI, saying that number of trial participants rating themselves as "much" or "very much" better after 52 weeks were 41% for cognitive behaviour therapy, 41% for graded exercise, 31% for adaptive pacing and 25% for specialised medical care. In other words, the overwhelming majority of participants reported they did not feel better.


29. The clinically useful difference CUD ie. the numbers of participants who showed statistically significant but, from the patient perspective, modest  improvements in fatigue and physical function at 52 weeks were graded exercise 61% (94/154), cognitive behaviour therapy 59% (87/148), specialised medical care 45% (68/152) and adaptive pacing 42% (64/153).


30. Action for ME comment : “ to focus on modest improvements in fatigue and physical functioning, which researchers can measure *CUD) – rather than on how much better patients themselves say they feel overall (CGI)– overstates the benefits and of these therapies."


31. The goal of the PACE trial was to “was to change the behavioural and cognitive factors assumed to be responsible for perpetuation of the participant’s symptoms and disability."


32. The authors did not conclude CBT/GET/PACING were cures for CFS or even 'effective' treatments for it; they said they were 'only moderately effective', a decidedly weak assessment of its effects and that assessment is the crux around which we should understand this study. (Phoenix Rising)


33. When asked did the treatments have significantly positive effects, about 40% of the participants said they did (for CBT) - meaning that almost 2/3rds of them received minimal or negative benefits from them. 


34.While most participants improved the tests revealed that few improved really significantly and none suggested a return to health had been achieved.


35. The therapies still left the participants with ‘more than usual’ fatigue/cognitive issues. 


36. The criteria for what constituted a ‘clinically useful result’ was quite low. All it took was a movement of less than 10% (scale-wise) on two questions for the therapies to be determined 'clinically useful.


37. Even with these lax criteria only 42% of Adaptive Pacing, 59% of CBT, 61% of GET and 45% of Specialist were able to meet them. To put it another way even with these low criteria fully 40% of the CBT participants ( the most effective therapy) did not achieve what the authors determined was a ‘clinically useful ‘result. 


38. CBT and GET were better than 'Adaptive Pacing' , however in the most effective treatments , participants went from an average of a five to a four - or from reporting they were in the first tier of being ‘very severely impaired’ to being almost very severely impaired. 


39. None of the therapies assisted the participants to come close to even maintaining an ‘easy health walk’ for all of six minutes.


Update : "None of the interventions in the PACE Trial enabled participants to achieve anything like a normal walking speed for the full six minutes when compared with a healthy individual. It is regrettable that Professor White decided to abandon the use of an actometer, which would have provided unequivocal objective evidence of improvement or non-improvement.  The only reported improvement on the six minute level walking test for those allocated to CBT was an increase of 21 steps, whilst for those allocated to APT (note that APT is not the same as pacing, as APT is a vehicle for incremental aerobic exercise and involves planning, achieving and sustaining targets) there was an increase of 20 steps, these improvements having cost the nation £5 million."



Response from Professor Malcom Hooper to David Jameson





40. None of these treatments returned their health to the participants or close to it. They were still highly bothered by fatigue, had high levels of symptoms and lacked endurance. If the objective was to get patients well -and the stated objective was to remove the factors that perpetuated their symptoms (ie that caused their condition) - the trial failed spectacularly. (Phoenix Rising)


41.The thesis that chronic fatigue syndrome results from deconditioning or fear avoidance or negative thoughts was not borne out by this study.


42. The word “biology” is not mentioned once in the PACE Trail Report.


43. The UK National Institute for Health and Clinical Excellence (NICE) have already said that they will review their 'CFS/ME' Guideline 53 when the PACE Trial is published: having previously refused to do so on the basis of biomedical research evidence presented to them - even though the Guideline was due for a scheduled three-yearly review last August. 


44. With the published PACE Trial results under their belt, NICE are widely expected to firm-up their behavioural guideline and make it harder for doctors to treat 'CFS/ME' patients in any way other than with CBT/GET in spite of growing international evidence contraindicating such an approach. (Anglia ME Action)


References :


Action for ME PACE: “surprising and disappointing”

Margaret Williams ME/CFS: Terminology: 27 April 2009

Cort Johnson A Hitch in its Step: PACE Trial Indicates CBT/GET No Cure For CFS, 60% of Patients Show No Significant Effects. Phoenix Rising http://forums.aboutmecfs.org/content.php?369-A-Hitch-in-its-Step

Professor Hooper’s Initial Response to the MRC PACE Trial Press Release hosted by The Lancet 17th February 2011
www.meactionuk.org.uk/Hooper-response-to-PACE-Trial-Press-Release.htm
CFIDS Association of America Falling Off the PACE Analysis of the Lancet study http://www.facebook.com/notes/the-cfids-association-of-america/falling-off-=the-pace/10150148445700539

Anglia ME Action Collective International Professional Response to PACE Required?









Breakthrough Prayer 9pm GMT Saturday 19th February 2011



Feb 19th 2011

PACE Trial

The day after the publication of the PACE Trial results we need not to despair but to place our trust in God's Light and Mercy.
I am the Light of the World
anyone who follows me will not
be walking in the dark
he will have the light of life
John 8 : 12

This is a wonderful affirmation of Christ's presence with us. We cannot be in the dark, even if it seems that way with earthly eyes, we can see clearly if we look with spiritual eyes that the light of life, Jesus Christ, is with us

This tells us we need not fear, even when all seems dark, because God will never abandon us; he will always be close. Such is the truth that even when Christ died on the cross, God was with him.

The Light of Life is with us. The Light of Life is God's immense gift to us. It is the living force, the light that energises, blesses, guides, is.

It is the light of Truth. The Way to the Father, the Light of men and the Life of men.

Joy indeed.

His gift is endless and boundless.

Joy indeed.

We`are never alone. The Light of Life sustains us and is triumphant over all adversity. For darkness cannot exist where light is. And light illuminates God's Holy Truth. And the truth will set you free.

How wonderful indeed then to know the power of light and the power of life that conquers even death. That is eternal. Praise God.

The Light of Life shines in us and sets us free. praise God for ever and ever.


When I feel weak
 Lord, be my strength
 When I feel troubled
 Lord, be my Light
 When I feel ill
 Lord be my Help
 When I feel Lost
 Lord, be my guide

I bring you Light and Peace to fill the darkness that surrounds you. Listen for Truth. Feel my Light shine golden, glowing, transforming. Love flowing out to meet you where you are.


You are my Light. Stand tall in the shadows and shine that light now for all to see and feel my radiant presence reaching out through you to heal, to forgive and love. Amen

PACE Trial : expensive nonsense

Stonebird 


PACE Trial : expensive nonsense


Voices of the people


Please note , this summary is offered as a service to people with Severe ME , who are not in a position to scan the literature. It is offered as a source of information and hope. If anyone objects to their comments being included here, please let me know and I will immediately remove them. Thank you.


On 23 December, NICE deferred its decision on whether or not it will update its guideline on CFS/M.E., pending the results of the PACE trial.

"That the findings of the PACE trial are completely at odds with the patient voice is of grave concern. Treatment for people with M.E. cannot be limited to therapies which only some find effective. Patients need to have a choice of real treatments."   Action for ME


Mike 

A similar study to the PACE trial, which was carried out in Spain by Dr. Joaquim Fernández Solà in “Hospital Clinic of Barcelona”, and published in January 2011, found NO benefits from CBT and GET when compared to standard medical care. The abstract can be found here: http://www.ncbi.nlm.nih.gov/pubmed/21234629
Reply



http://cfsuntied.com/blog2/2011/02/18/pace-and-other-cool-acronyms/




Scríbhneoir páirt-aimseartha



Once again, the CBT/GET brigade are out in force, scoffing at medical ethics and wilfully putting the health, wellbeing and even the lives of millions of M.E. sufferers at risk. A hugely publicised trial, published today in The Lancet, has been claimed to show that the treatments are safe and effective for “chronic fatigue” patients. Another of its main findings is that pacing, the treatment method judged by the vast majority of M.E. patients to ameliorate their symptoms, is ineffective.


These are hugely problematic and troubling claims on too many levels to cover in one blog post. For one, “chronic fatigue” as defined by the report’s authors means the Oxford Criteriafor M.E. This is a hugely inclusive definition which, by design, covers patients with undiagnosed psychiatric disorders and unrelated physical illnesses who do not meet the objective criteria for M.E./C.F.S. Not surprising, then, that one of the report’s authors claimed that “CFS clinic doctors should be trained to diagnose psychiatric disorders”. The report ignores and denies the World Health Organisation definition of M.E. as a neurological disorder (benign Myalgic Encephalomyeltis, WHO ICD-10 G93.3).



http://nighearain.wordpress.com/2011/02/18/the-pace-trial-this-is-not-a-good-day-for-people-with-mecfs/

Clouty



The cohort did not include ME patients (which is a neuro-immune disease) as it was chosen using the Oxford Definition which excludes patients with neurological symptoms.


We selected participants in accordance with Oxford criteria for chronic fatigue syndrome.11 These criteria require fatigue to be the main symptom, accompanied by significant disability, in the absence of an exclusionary medical or psychiatric diagnosis (psychosis, bipolar disorder, substance misuse, an organic brain disorder, or an eating disorder).11
2/ The patients were chosen from those attending CFS Clinics - pwME generally refuse to go to, or drop out early from said clinics, as they offer nothing helpful for someone with an organic disease.
3/ the benefits shown were measured subjectively, when there was an objective measure available, which was used earlier in the study. Why did the study design not include measurement of activity via a pedometer or actometer?
4/ Standard medical care with a consultant will not include anything that we have actually found helpful for ME, as the NICE guidelines preclude B12 therapy, diet supplementation, anti-biotic therapy, etc,. So I'm not surprised that lot did not improve much.
5/ Lies, damn lies, and statistics: one of the first things to look out for is the scale. Here, it is expanded by dint of starting the vertical axis at 18, with that field reduced by over 50%. This dramatasizes the movement in the results.
6/ The subjective results were insignificant. Best case was 6 - 8% improvement. That's about £750,000.00 per percentage point.
These results are long overdue. We knew they had not got the results they had hoped for. They have made up for that with spin. No surprise.
Meanwhile, in the world of real science, Eric Klein of the Cleveland Clinic explains how XMRV infection works in the recent Monkey study...http://webcasts.prous.com/AUA2010/html/1-en/template.aspx?section=20&idl=11920&idcl=1&eid=574



http://www.guardian.co.uk/society/2011/feb/18/study-exercise-therapy-me-treatment





Gob987



These so called scientist are trying to trick the public.

The Department of Health in England has repeatedly stated in Parliament that they accept the World Health Organisation’s classification of ME/CFS as a neurological condition of unknown cause (WHO ICD-10: G93.3). Why then does the PACE trial use the Oxford criteria for “CFS”, which specifically excludes those with neurological signs? The existing scientific literature on the neurological disease ME/CFS shows that this disease affects every system in the body and that numerous physiological abnormalities have been documented.




http://www.independent.co.uk/life-style/health-and-families/health-news/got-me-just-get-out-and-exercise-say-scientists-2218377.html#disqus_thread



Jane



For £5 million public funding, this is expensive nonsense.

1/ The cohort was chosen from the CFS clinics - people with ME generally refuse to attend or drop out early

2/ The cohort was chosen by first filtering with the Oxford Definition, which excludes people with neurological disease. Myalgic Encephalomyelitis is a neurological disease

3/ The benefits shown were measured subjectively, when there was an objective measure available, which was used earlier in the study. Why did the study design not include measurement of activity via a pedometer or actometer at final outcome?

4/ Standard medical care with a consultant will not include anything that we have actually found helpful for ME, as the NICE guidelines preclude B12 therapy, diet supplementation, anti-biotic therapy, etc,. So I'm not surprised that lot did not improve much.

5/ Lies, damn lies, and statistics: one of the first things to look out for is the scale. In the graph showing overall results, it is expanded by dint of starting the vertical axis at 18, with that field reduced by over 50%. This dramatasizes the movement in the results.




http://www.independent.co.uk/life-style/health-and-families/health-news/got-me-just-get-out-and-exercise-say-scientists-2218377.html#disqus_thread



contramundum



I really don't understand how this study even got the go ahead? How can people with a severe neurological illness of which the cause is not known, be helped by these kind of "treatments"? Treatments, by definition, can only be implemented when the cause is known.

Most people with M.E. suffer from post exertional malaise in which the outcome of activity and exercise can cause huge amounts of pain, discomfort and in some cases long term damage.

I suspect that within the cohort chosen for this study, there were many people who don't even have M.E. but probably CFS, which is entirely different, but still of an unknown cause.

What a huge waste of money!




http://www.independent.co.uk/life-style/health-and-families/health-news/got-me-just-get-out-and-exercise-say-scientists-2218377.html#disqus_thread



Nicola Karen Reiss 



Oh right, so with two research Master's degrees under my belt, and a wealth of experience teaching and working at universities such as Cornell and UEA, I'm unable to figure out that exercise would cure my illness? I've been sick for 4 years, unable to work for 3. I loved my job. When I first became ill I pushed myself, always believing that exercise was good for me - I did yoga for hours, I walked and walked.... until I was on the point of collapse. Exercise made my condition worse. Far worse. This is no ordinary disease. This study has confused people with minor 'fatigue' problems with those who have the neurological illness M.E. (myalgic encephalomyelitis) as defined in the Canadian Consensus Criteria. The people who ran this study have links to the insurance industry and have much to gain from perpetuating the dangerous myth that 'chronic fatigue' is the same as M.E.



http://www.independent.co.uk/life-style/health-and-families/health-news/got-me-just-get-out-and-exercise-say-scientists-2218377.html#disqus_thread






bullybeef



ME - Myalgic Encephalomyelitis. It would be nice if the actually name of this disease is spelt correctly first!

Recently, this following study regarding the retroviral link to ME/CFS was published and written about it the WSJ: 
http://blogs.wsj.com/health/20.../

Also here is a clip of a brief lecture by one of the researchers from the above study. It is a very sobering listen: 
http://webcasts.prous.com/webc...=

Finally on the PACE trail website they have printed this following disclaimer with regards to GET/CBT therapy, based upon their study reported today: 
http://www.pacetrial.org/trial...

“These treatments should only be delivered by appropriately qualified healthcare professionals, who have received appropriate training and continued supervision in their use. The treatments described were not designed to be stand-alone self-help approaches. No responsibility is accepted by the authors for the application of treatments described in these manuals outside of the PACE trial. The PACE trial team are unable to respond to queries or comments regarding the use of these manuals or the treatments described.”

So, to publish treatment techniques that are only to be used by trained researchers whom were directly involved in the PACE trails is very contradictory. They also openly confess that these treatments are not to be used as self-help approaches; why is that, if their research is as conclusive as they suggest, why doubt the approaches?


To also suggest that the researchers involved in the PACE trails cannot be help responsible should the treatments have adverse effects on patients is surely an ethical issue, and to then close themselves off from making any public comment seems very surreptitious.

Finally, why publish results like, and not present the disclaimer publicly in the article? Surely if there is any doubt in these treatments, it should be written into the publication.
And one last comment to investigate, at the very bottom of the article link below, it lists the institutions whom funded this study. So why are the Department of Work and Pensions involved in the funding? It has been reported that the DWP have never funded any study into any disease ever, so why ME?: 
http://www.thelancet.com/journ...

Answer: If it can be agreed that ME is of a physcological nature, the DWP can refuse benefit payments for a physical disease. It always comes down to costs, and researching, treating, and caring for people with ME would simply be too costly for our government. CBT/GET therapies are the easiest and cheapest therapies to offer.

I hope your paper can investigate and look a little more closely at what lies behind this treatment for a disease that has been listed as a neurological disease, in the same bracket as MS, since the 1960s. If CBT/GET is so successful for ME, why not treat MS patients with it?



http://www.independent.co.uk/life-style/health-and-families/health-news/got-me-just-get-out-and-exercise-say-scientists-2218377.html#disqus_thread



chemilyx



How do you think you would feel if you had an illness in which you had little hope of recovery because scientists don't know the cause, let alone a treatment. Your recovery is based on pure chance and time more than anything you can control. Every single day is a struggle for understanding, let alone anything more. As a neurological condition, it affects your body in most ways - it's a completely pervasive illness which affects every ounce of who you are and who you can be. Everything is a struggle. How dare you have the audacity to publish something so badly thought out. Have you ever thought, for a second, about how a sufferer might feel to read this? Try and put yourself in a patient's position and just think, for a god damn second. I hope doing so will make you remove this crap and issue a public apology for it.



http://www.independent.co.uk/life-style/health-and-families/health-news/got-me-just-get-out-and-exercise-say-scientists-2218377.html#disqus_thread
Maldon



The work of real scientists confirm that Myalgic Encephalomyelitis (ME/CFS) is an inflammatory Neuro-immune disease that is not improved by exercise or behavioural modification as erroneously asserted in Backwards Britain.

“These findings are consistent with an activated inflammatory response. Shockingly, the mean QOL (quality of life) scores as regards limitations on physical functioning were very, very low (in ME sufferers), similar to those found in people with AIDS and multiple sclerosis” (Advances in biomedical understanding of ME. Neil Abbot. Vance Spence. InterAction May 2004).


Professor Nancy Klimas University of Miami Medical School, and Director of HIV/AIDS Research Miami Veterans Centre describing ME/CFS:
“…there is a chronic inflammation, neuro-inflammation, and it upsets the whole balance of your systems…the patients become terribly ill…. The immune system is really cranked up; it’s a tremendous amount of inflammation. I think that if doctors could get this in their heads that it’s .. like lupus or one of these really inflammatory disorders…it is that level of inflammation. There’s a tremendous amount of inflammatory stuff going on, and there’s a lot of inflammation in the brain itself”




http://www.independent.co.uk/life-style/health-and-families/health-news/got-me-just-get-out-and-exercise-say-scientists-2218377.html#disqus_thread



Katyak



Can't believe an article of this ilk has appeared in the Indy. The Headline is of the sort one would expect in a tabloid paper. And the journalism is unbalanced and sloppy.

The PACE trial had so many flaws in design that, if it were a bridge, it would have collapsed long before the first car even got close to crossing it. One of the many flaws being the (Oxford) criteria used to recruit people, which are so broad they could include about a quarter of the UK's population at any one time (Professor Leonard Jason, an epidemioloist, has published good quality evidence showing the problems and skewed results attained using such vague criteria as the Oxford). Indeed, anyone with a neurological illness was deliberately excluded from the trials and, er, the Department of Health (as well as the WHO) defines ME as a neurological illness. Get your head around that one if you can!

And it was not 640 'severely affected' people with ME - I can't belive the Indy got that wrong. Anyone with severe ME would have been unable to attend the clinics where these trials were run. In fact, the researchers had problems recruiting people to take part, a high drop out rate, and included no housebound or bedbound (ie severe) patients. Please check the details.


This is a day not of hope but of despair for ME sufferers. We have slipped through the looking glass to a world where illusion is reality and reality illusion, where policy-based evidence (for this is what the PACE trials effectively are) replaces evidence-based policy.


The Indy used to be a source of impartial journalism about ME. What happened?







http://www.independent.co.uk/life-style/health-and-families/health-news/got-me-just-get-out-and-exercise-say-scientists-2218377.html#disqus_thread



Lucy Clark



I am truly ashamed of the Independent right now and I cannot even begin to explain how angry the headline makes me and how detrimental it is to those of us who suffer with M.E. I am not one of those M.E. militants who people stereotype as not wanting to get better or refusing to try out treatments. I have tried everything from CBT, NLP & hypnotherapy to a CFS Management programme run by the NHS. None of which have worked. I have had M.E for 14 years and this is the most unhelpful thing I have heard. Pushing yourself to the limits does not help, this is something I have learnt the hard way and although I continue to push myself, it has not helped me to recover and at times has made me worse. The more exercise I do, the more pain I get and I have tried to build it up but once it gets to a point it is too painful to carry on and just makes it worse. Congratulations for giving credit to a 'study' which will only hinder those with M.E's road to recovery.



http://www.independent.co.uk/life-style/health-and-families/health-news/got-me-just-get-out-and-exercise-say-scientists-2218377.html#disqus_thread