OFFICIAL UK 'CFS/ME' PACE TRIAL Manuals are NOW ONLINE. http://tinyurl.com/3xj3uke http://tinyurl.com/37h35ca "Evidence from research trials has indicated that patients who are in receipt of benefits or permanent health insurance do less well than those who are not in receipt of them" [Extract/quote from Official Pace trial Manual - See below] INTRODUCTION: Manuals for the PACE Trial have been placed on a file-sharing facility. In my view the documents illustrate how psychological and emotional pressures have been applied to individual insecurities and scientific ignorance surrounding ME/CFS, providing insights into the nature and agenda of previous CBT and GET trials, and a view of the disease along with a seemingly acceptable way to treat and portray lay people with ME/CFS. The PACE documents and Study are endorsed/sponsored in the UK by the Medical Research Council (MRC), the Department of Health (DoH), the Department of Work and Pensions (DWP) and the Scottish Chief Scientist Office. The files include the official/internal Manuals of the Principle Investigators of the psychosocial UK 'CFS/ME' PACE TRIAL. No ME/CFS activist can afford not to download these large documents, circulate them widely and comprehensively examine them. In the manuals' author's own words, they lay bare what British ME sufferers are about to be exposed to, what underpins that which is likely to be used by NICE to endorse its 'CFS/ME' Clinical Guideline 53 in its imminent internal review, and gives insight into what may lay ahead for patients in other countries that follow the UK model. There are two separate large files, both of which contain the same set of Official PACE Manuals along with additional and respectively different sets of relevant bonus materials. They are available to be downloaded using bit-torrent / peer-to-peer file-sharing. Either Google "XMRV - THE UK PACE TRIAL..." or go to the short URLs given below: File-#1: XMRV - The UK PACE TRIAL  http://tinyurl.com/3xj3uke [IMPORTANT - Click on the small green link at this peer-sharing website entitled "DOWNLOAD THIS TORRENT", don't, repeat don't click on the Large green button with the word "Download" on it as this directs you away from the site.] File-#2: XMRV - UK PACE TRIAL  http://tinyurl.com/37h35ca [IMPORTANT - Click on the small green link at this peer-sharing website entitled "DOWNLOAD THIS TORRENT", don't, repeat don't click on the Large green button with the word "Download" on it as this directs you away from the site.] I am very grateful indeed to those making these files available to the ME community. EXTRACTS/QUOTES FROM THE PACE MANUALS: Standardised Specialist Medical Care Page 33 - "If participants are insistent that there is an ongoing "physical" problem, it is rarely helpful to directly challenge them on this point. It is important that you acknowledge that their illness is real but its effects can be reduced by the way they manage it." Adapted Pacing Therapy Therapists Manual Page 55 - "A patients typical day will often look like the record shown below. Time Activity 9.00 am Get up, Take 1-2 hours to come round, Get washed, dressed. Have breakfast. Feed dog, make packed lunches 10.00 - 12 noon Do various bits of housework 1.00 pm Prepare and eat lunch 2.00 pm 5.00pm Rest, often sleep 5.00pm Walk dog (sometimes) 6.00 - 8.00 pm Feed children, talk to family, watch TV 9.0 pm Go to bed take 1-2 to sleep" CBT Therapists Manual Page 20 - "Perfectionism Just as personality can be a factor in contributing to the development of CFS/ME, it can also be a perpetuating factor. People who are perfectionists are likely to have more difficulty in taking breaks or rests in the day as they feel that they are "wasting" time and "should" be doing something useful. This may lead them to adopt a "boom and bust" approach to activity which makes it difficult to establish any sort of routine." Adapted Pacing Therapy Therapists Manual Page 42 - "Is this a cure? Be honest, the answer is no" CBT Therapists Manual Page 125 - "Many people have successfully overcome CFS/ME using cognitive behaviour therapy, and have maintained and consolidated their improvement once treatment has ended" GET manual Page 55 - "It should be explained that in order for the body to continue strengthening, and for changes to be maintained, that exercise should form a regular part of their lives from here onwards. The long-term benefits of exercise for prevention of CFS/ME specifically, and other diseases in general can be emphasised." GET manual Page 59 - "In contrast to CBT, it is important that you do not consciously provide cognitive interventions or interpretations e.g. suggest that being able to exercise more may mean that there cannot be a persistent viral infection in their body." Pace Trial Management Group Page 31 - "Graded Exercise Therapy Information for Participants There is nothing to stop your body from gaining strength and fitness, as long as it is done in a carefully monitored way, relating directly with your own particular circumstances started and progressed at the right rate for you. Good luck!" Pace Trial Management Group Page 84 - "Your improvements will continue as long as you maintain your level of activity and exercise. It is crucially important not to stop exercising after discharge, but rather to continue maintaining or building upon the changes you have made. Establishing a routine of physical activity and exercise is essential to keep your good health and to prevent symptoms in future." GET manual Page 23 - "The more severely disabled group of CFS/ME patients were excluded from previous studies as the studies involved an exercise test that may have been too challenging. However due to greater levels of inactivity in the more severely disabled group, the deconditioning model should apply equally if not more to these patients." GET manual Page 50 - "A central concept of GET is to MAINTAIN exercise as much as possible during a CFS/ME setback." CBT Therapists Manual Page 50 - "Current situation (housing, living with, work, benefits, interests) This section will draw together a lot of what you may already know. It may help you determine areas that will need to be addressed in your sessions. For example, it may draw your attention to problem areas such as inadequate housing, financial difficulties due to not working that may be factors that are contributing to the maintenance of their CFS/ME. Although you will have asked about employment and benefits, it would be useful to find out, if they are not working, whether they want to return to their previous job. There is some evidence to suggest that being on benefits and/or income protection (IP) are poor prognostic factors as they are contingent upon the patient remaining unwell. Knowing about their current interests/hobbies may be helpful when you come to discuss targets for treatment." CBT Therapists Manual Page 97 - "Discuss potential blocks to recovery Participants may be following their agreed programme diligently, but may be experiencing difficulties in making progress, If this is the case, it is useful to identify and discuss possible reasons. There may be some very obvious reasons for their lack of progress, e.g. a total lack of support from a partner, ongoing stressful situations or having another illness on top of their CFS/ME. Sometimes the reasons are less obvious. For example, if a participant is in receipt of benefits, or income protection (lP), this may inadvertently lead them not to push themselves too hard. This may result from a feeling of having to prove that they are "still ill" in order to keep their benefits." CBT Therapists Manual Page 99 - "Being in receipt of benefits or income protection (IP) If this is something that has not already been addressed, it is important to address it at this stage. People with CFS/ME are sometimes very keen to come off benefits and it does not cause them too many problems, maybe because they have another source of income. However, it can raise a lot of issues for other people and can be a source of great anxiety. Evidence from research trials has indicated that patients who are in receipt of benefits or permanent health insurance do less well than those who are not in receipt of them. In reality, benefits and IP can help patients financially in the shortterm, but prove to be an obstacle to getting better in the long term. In order for benefits or IP to continue, patients have to have regular check-ups in order to prove that they are still ill. This can understandably be very distressing for patients and be an active factor in maintaining their condition. For some patients, returning to work can be very frightening as it may have been a major contributing factor to them becoming ill in the first place. Obviously for some patients, work is not an option due to the severity of their symptoms. For more information on work related issues, please see Appendix 20. There is also a section in the participants' manual on work, courses and resources that you may ask them to read" CBT Therapists Manual Page 100 - "Benefits Participants may feel trapped by their benefits, i.e. some benefits will stop being paid if they earn more than 20.00 a week. Participants may find the prospect of stopping benefits and working the number of hours required to earn more than their benefits would pay quite daunting. They can also be very fearful that if they come off benefits and have a relapse, they will not be able to receive benefits again. It is therefore useful to spend time discussing their fears and discuss different options. If they are keen to come off their benefits, it is useful to discuss steps to be taken to increase their ability to work, e.g. by doing some voluntary work, or permitted work'. IP For participants who are in receipt of IP, it can be worth discussing the advantages and disadvantages of being on it. For participants who feel clear that they do not wish to return to that job, it may be useful for them to discuss the possibility of resettlement options with their employer. For participants who wish to return to their previous job, but feel unable to work the hours that they used to do, you could suggest that they discuss a graded return to work, or part-time work. For participants considering a return to work it is helpful to suggest that they build up their stamina and confidence in their ability to work again, e.g. by doing some voluntary work., For participants who want to leave their job, it is worth discussing different options with them and getting them to look at different alternatives for homework. It is helpful for you to offer to write to employers, insurance companies, be involved in meetings with their occupational health department or what ever is necessary to help participant to meet their work-related goals." CBT Therapists Manual Page 67 - "Feeling that a physical cause has been missed and wanting further investigations Some participants may not hold a specific belief about what is wrong with them, but feel that despite many investigations, something has been missed. They may feel that they want to continue having investigations or try a variety of treatments until they are cured. Again, it is important to empathise with their situation, but to encourage them to hold off having further investigations until after they have completed a course of CBT. Participant I am feeling so exhausted, I really cannot believe that all my tests are clean l feel sure that something has been missed. I think I might go to my GP just one more time to ask him if there are any other tests that I could have. Therapist I can understand that with feeling the way you do, you feel something has been missed. However what I am proposing to do is to help you to understand why you feel as bad as you do and also to see if we can help you to feel a bit better in the process. Would that be o.k. ? Participant But what if something has been missed that could be easily rectified? Therapist From your notes I can see that you have had many tests, none of which point to a simple explanation for your fatigue. It therefore seems unlikely that someone would be able to detect an obvious cause of your problems. Although I can see the temptation of seeking further clarification of your problems, in reality what can happen is that you end up feeling more confused. I believe that your fatigue is a symptom of a bigger picture and I would like to spend some time discussing my thoughts on this matter with you. I wonder how you would feel about that? Participant Well, I suppose it wouldn't do any harm! Therapist What I suggest that we do is to get a large piece of paper and write down what we do know about your illness, including your symptoms, what was happening at the time you became ill and ways that you have been managing to deal with your illness to date. This information may help us to look at factors that may have triggered it and factors that may be involved in keeping it going. I hope this will help us to make some sense of your illness together before we move on to discussing ways of overcoming it. Would you give my suggestion a go? Participant Yes Therapist Great. Then maybe that would be a good place to start this session." BACKGROUND/CONTEXT: To put matters into context I suggest that you read the peer-reviewed paper entitled "Zombie Science a sinister consequence of evaluating scientific theories purely on the basis of enlightened self-interest", Professor Bruce Charlton, Medical Hypotheses (2008) 71 327-329, DOI: 10.1016/j.mehy.2008.05.018: http://medicalhypotheses.blogspot.com/2008/07/zombie-science-dead-but-wont-lie-down.html And do please also see the formal complaint made by Professor Malcolm Hooper, and associated documents, concerning PACE... - "Magical Medicine: How to make a Disease Disappear" by Professor Malcolm Hooper: www.meactionuk.org.uk/magical-medicine.htm - "Ethical and Scientific Concerns about the MRC PACE Trial" by Professor Malcolm Hooper: www.meactionuk.org.uk/MREC-complaint.htm - "Update on Complaint to the MRC about the PACE Trial in the light of the confirmation of a strong association of a retrovirus with myalgic encephalomyelitis/chronic fatigue syndrome" by Margaret Williams: http://www.meactionuk.org.uk/Update-on-MRC-complaint.htm - "So near yet so far from Mission Accomplished?" by Margaret Williams: http://www.meactionuk.org.uk/So-near-yet-so-far.htm - "MRC PACE Trial Letter" by Professor Malcolm Hooper: http://www.meactionuk.org.uk/PACE-Hooper-071010.htm - "Another secret file on ME/CFS comes to light", 8 October 2010, by Margaret Williams: http://www.meactionuk.org.uk/Further_Articles.htm - "Knowledge or Belief?" by Margaret williams: http://www.meactionuk.org.uk/Knowledge-or-Belief.htm Regards, Anglia ME Action. firstname.lastname@example.org http://tinyurl.com/3xj3uke http://tinyurl.com/37h35ca PLEASE REPOST THIS MESSAGE WIDELY. ENDNOTES:  XMRV- The UK PACE TRIAL File #1 http://tinyurl.com/3xj3uke File seeder's comment: "The poor quality of much medical research is widely acknowledged, yet disturbingly the leaders of the medical profession seem only minimally concerned about the problem and make no apparent efforts to find a solution. "As the system encourages poor research it is the system that should be changed. We need less research, better research, and research done for the right reasons. Abandoning using the number of publications as a measure of ability would be a start". Douglas G. Altman The Scandal of Poor Medical Research British Medical Journal January 1994 ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~  XMRV- UK PACE TRIAL File #2 http://tinyurl.com/37h35ca File seeder's comment: http://www.hhs.gov/advcomcfs/meetings/minutes/cfsac052709min.html William Reeves (CDC): "The collaboration with Peter White is largely because Peter White came to us when the national health service in the UK was trying to design its program and formulate recommendations about what the health service in the UK should do. We've consulted with them as far as our ideas and our expertise, and we collaborate with Dr. White on the PACE trial. He's an unusually intelligent individual-you've read some of his comments on some of our articles-whom we enjoy sparring with. He is an expert on autonomic nervous system function and he's highly instrumental in all of the hurdles, both with patients with the government and with physicians, in trying to put together, given the current state of knowledge, a national program". (see Welsh Government Disclosure 2296) ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ "The poor quality of much medical research is widely acknowledged, yet disturbingly the leaders of the medical profession seem only minimally concerned about the problem and make no apparent efforts to find a solution. "As the system encourages poor research it is the system that should be changed. We need less research, better research, and research done for the right reasons. Abandoning using the number of publications as a measure of ability would be a start". Douglas G. Altman The Scandal of Poor Medical Research British Medical Journal January 1994 ~~~~~~~~~~~~~~~~~~~~~~~~ ************************************ MESSAGE ENDS - PLEASE REPOST WIDELY.