Latest news on ME research

Discussion in 'Fibromyalgia Main Forum' started by surfnut, Jan 7, 2010.

  1. surfnut

    surfnut New Member

    Just thought I`d post this as Ive just come across it and thought it might be of interest.

    Latest News

    F.O.R.M.E invited to give evidence to the Gibson Inquiry -- The Group on Scientific Research into Myalgic Encephalomyelitis (ME.) chaired by Dr Ian Gibson MP who expects to have the Report completed by the end of October. (More information about the Gibson Inquiry can be had on

    F.O.R.M.E. asked to send a representative and a patient to give a presentation lasting not more than 10 minutes. Dr Raymond Perrin D.O. PhD. F.O.R.M.E.'s Research Director in charge of research and Steve Briggs Hon Treasurer but also patient of Dr Raymond Perrin's, travelled down to the House of Commons to give evidence. Written evidence has also been submitted as minuted below.

    Dr Raymond Perrin's and Steve Briggs' Oral Evidence given to the Gibson Inquiry 18 April 2006
    (The text below is based on the official Minutes which can be viewed on and The two versions differ slightly as does F.O.R.M.E.'S version.)

    Steve Briggs [Patient.]
    Steve Briggs was a sufferer who spoke on behalf of the positive effects of Raymond Perrin's work in his experience. He detailed that before the onset of his illness he had a strong work-hard play-hard ethos. He listed symptoms of his illness including chronic fatigue, reduced immune levels, fluctuating energy levels, sleeplessness and severe pain that made his life become a prison. His feelings of isolation increased as he lost friends and increasingly relied on support financially.

    Since beginning to see Raymond Perrin Steve Bnggs said he has been transformed. Within two years of starting therapy, he was working full time, was an active husband and dad, was able to walk for miles and play golf for two or three hours without any adverse side affects. Eight years on he still maintains this good standard of health. He provided his full support for the Perrin technique and introduced Raymond Perrin to the group.

    Dr Raymond Perrin F.O.R.M.E. [Research Director F.O.R.M.E.]
    Dr Raymond Perrin informed the group of papers he wished to submit to the group and which the group received (Oral Hearing 1: Submission 3).

    Dr Perrin described ME as a pre-viral condition that lead to an overstrained sympathetic system associated with increased permeability of the blood-brain-barrier and the accumulation of toxins in the brain. Chemical sensitivity was one characteristic of the condition.

    Since the brain lacked any lymphatic drainage system secondary drainage via cerebrospinal fluid had to be facilitated resulting in the eventual elimination of toxins via the liver and kidneys.

    Dr Perrin illustrated how he regards ME as a functional biophysical mechanical disorder marked by other postural problems. Tender points are characteristic with lymphatic varicosities and dermal striae being prominent.

    Treatment involves a specific form of manual lymphatic drainage, gentle cranial massage to increase drainage via the cerebrospinal fluid and gentle articulation of the spine and soft tissue massage of the surrounding musculature. Organophosphates are among the many toxins involved.

    Dr Perrin went on to claim in response to a question to another speaker that the reason why (Graded Exercise) GET has been shown to be helpful in prior research was that it improved stamina when recovery had begun. Missing the point, this was strongly challenged by other speakers, who made it clear that GET was dangerous and damaging and it was not possible to be sure when recovery had begun in any particular person. Dr Perrin accepted that everybody was different but again stressed that what he meant was that GET did not actually help the CFS/ME but was good at building up strength and stamina after a protracted illness and this was why it had showed some success in previous research but would not work with patients still ill with CFS/ME.


    Since a fateful day in 1989 when I first successfully treated CFS/ME in a patient with postural problems I have been on a mission to find out why I was able to help this complex disorder by simple manual techniques. After 17 years of clinical research including 2 controlled trials at the Universities of Salford and Manchester. My co-workers and I have scientifically demonstrated that my treatment methods did indeed help with symptoms associated with CFS/ME and proposed a rational hypothesis to explain why my techniques help. Most significantly we found no structural abnormalities or pathological changes in the brain or muscles of the CFS/ME patients compared with matched healthy controls.

    To understand how to treat CFS/ME One has to examine the probable mechanism causing the disease in the first place.

    1. The central nervous system has no true lymphatic drainage. However a function of the cerebrospinal fluid that is not well documented is the drainage of toxins into the lymphatic system at both cranial and spinal outlets. This extra drainage system supplements the normal drainage of csf via venous return. And we suggest that it is this system that is the common disturbance that links all CFS/ME sufferers

    2. There are also several chemical sensitive regions bordering the brain's ventricular system, which interact with toxins sending messages to the hypothalamus. Also, one of the most permeable regions of the blood brain barrier is at the hypothalamus facilitating its ability to the monitor hormone levels in blood. This increased permeability also makes the hypothalamus the most prone region in the brain to suffer a toxic insult.

    A. The hypothalamus controls the sympathetic nervous system which becomes dysfunctional in CFS/ME and we now know that the sympathetic nervous system controls a pump within smooth muscle walls of the central lymphatic ducts as well as blood vessels. In CFS/ME a backflow of lymph thro the reversal of the normal pump causes further toxic insult to the surrounding tissues including the brain and spinal cord.

    B. At the same time and often many years prior to the onset, different stress factors some physical, or environmental, hormonal, allergic, emotional or via bacterial or viral infections lead to an overstrain of the sympathetic nervous system

    C. The ensuing neurological overload has at last been identified by other experts as integral part of CFS/ME as seen in the recent Canadian Criteria. The final insult is only part of a much larger aetiological picture often dating back years. Thus CFS/ME in many cases is actually a pre-viral condition with a possible virus being the last straw.

    My approach stimulates the fluid motion around the brain and spinal cord via gentle cranial techniques. Articulation of the spine further aids drainage of these toxins out of the cerebrospinal fluid. Specific massage techniques of the soft tissues direct the toxins out of the lymphatic system and into the blood, towards the liver where they are readily detoxified.

    Eventually with less poisons affecting the hypothalamus, the sympathetic nervous system and the lymphatics begins to function correctly, and providing the patients do not overstrain themselves their symptoms should steadily improve.

    CFS/ME is thus very much a functional biomechanical disorder with definite diagnosable physical signs including disturbed spinal posture, swollen lymph vessels palpable and occasionally visible and specific tender points related to sympathetic nerve disturbance and backflow of lymphatic fluid. The fluid drainage from the brain to the lymphatics moves in a rhythm that can be palpated using cranial techniques and a trained practitioner can feel a disturbance, usually a sluggishness, of the cranial rhythm in CFS/ME.

    (photos shown to the committee showed visible proof of actual surface lymphatic varicosities in a CFS/ME patient, the bottom photo is clearer and the absence of any blue/purplish hue confirms these as lymph and not blood vessels).

    OTHER SIGNS: include marked abnormal striae (stretch marks) in the breasts, waist and thighs of patient due to collagen damage in the surface lymphatics, severe acne and skin eruptions due to toxins eg candida patches/rashes, Evidence of injury to head eg scars, and pupil dilation or constriction.


    Multicentre studies using a much larger cohort of patients are most definitely required in the future to further validate my hypothesis.
    From the biomechanical approach I have recently been offered the post of honorary research fellow at the Allied Health Department in the University of Central Lancashire, Professor Jim Richards who is head of research at the department wishes to further explore the physical aspect of CFS/ME.

    However my treatment alone is often not enough in many cases.
    I believe due to the multifactoral nature of this disease, with every patient presenting with different symptoms, the solution lies in finding out which treatments work best and establishing a large comparative and collaborative study. A combined approach with other clinical researchers will ultimately prove to be in the patient's interest in finding the best treatment protocol and Prof. Richards and his team at UCLAN are interested in joining any research study that is proposed.

    Another area of exploration arising from my thesis that requires further investigation is the examination of the drainage rate of CSF into the lymphatics. Agreement has been reached for a future study to be undertaken at the University of Manchester's department of Fluid Mechanics and Aeronautical engineering. Researchers, using and computerised models of the bio-mechanical influences affecting the lymphatic drainage of the brain are to calculate a possible range of normal values of this drainage.

    I believe future studies should also focus on Functional and pharmacological MRI which can be used to determine pathophysiological dysfunction in the central nervous system.

    As in all areas of medicine, genetic research has a major role to play in improving our future understanding of aetiological mechanisms that may pre-dispose patients with CFS/ME. .

    Finally if we in this room can all work together, I believe that the future of hundreds of thousands of sufferers in the UK will be much rosier. Thank you.