Tullamore rings in the changes for M.E. and Fibro

The latest blog alert was for Sunday 9 October, with the theme being “what the disease is doing to you, how you are affected day to day and what your hopes for the future are”. I couldn’t take it up as I was in Tullamore for an international conference on M.E. and Fibromyalgia held by the Midlands Fibromyalgia Support Group with support from the Academy of Nutritional Medicine (AONM). However, I think it’s possible, in writing up some of my impressions of the conference, to answer some of those questions. Luckily for me (given that I’m still recovering from that strenuous day), I don’t have to go to the trouble of transcribing my notes just yet, as the AONM have generously written up summaries of all speakers’ presentations.

Regrettably I and the person who went with me, who has M.E. and possibly Fibro as well, missed Dr Peter Julu’s talk. The conference was to start at 9 a.m., and the first train to stop at Tullamore on a Sunday morning leaves Heuston at 8.30. Not that I would have made an earlier one: I had to get up at 6.40 as it was. We somehow managed to get a bit lost when we got to Tullamore – I was at fault for relying on Google Map’s disingenuous representation of the hotel’s location – and so I was tired enough by the time we had registered to want to rest until the first coffee break. With a very large body of sick people to refresh, the coffee breaks each lasted half an hour, and tea, coffee and biscuits (not forgetting a gluten-free selection) flowed liberally. Water was also available at all times inside the conference room. Otherwise, it wasn’t easy to tell that the attendees weren’t your average conference-goers, though a few were in wheelchairs and there was some comfortable seating for those too tired to sit in the normal seats for any length of time. The lengthy breaks and the attentiveness of the organisers and hotel staff to our collective comfort meant that just about a majority managed to stay until the end, although, if they’re like me, they’ll still be recovering.

Of course, given the recent developments with her research and the severance of her connection with the Whittmore Peterson Institute, Dr Judy Mikovits’s talk was of great interest to many. She let it be known that she has an offer to continue her work on patient blood samples in Canada. Her account of the partial retraction of the Science paper was that she had not relayed a standard methodological process, so it was more of a correction than a retraction, if I understood her correctly. Dr Perrin added at the end that the authors of the paper on XMRV (Lombardi et al) had not claimed to have found a cure for M.E., and that the media had mistakenly claimed otherwise. Dr Mikovits’s paper was much too dependant on terminology specific to virology for me to make any judgement about her work. She did maintain that the samples that Lombardi at al studied had not been contaminated, as others had claimed. She also stated that other researchers had not replicated the conditions of the initial study – a requirement of science! – and that it was vital that it continued, and research into other diseases like cancer stood to benefit by it. (Since I started writing, I found this  detailed summary of her paper.)

Most of the papers contained the theme of autonomic nervous system dysfuntion. Dr Julu’s paper suggested that it was a factor in cardiorespiratory dysfunction in M.E. Dr Goyal talked about the exhaustive process of health support and detoxification (which includes elimination of latent viruses, should they be present) which can help regulate the immune system. Dr Daniel Perrin is an osteopath whose methods of treating M.E. have been verified in some recent studies and he talked about what he believes is behind the neurological dysfunction in M.E. and why viruses have shown to be present in the spinal fluid of some M.E. patients (an autopsy on Sophia Mirza had massive amounts of viruses present. Her death was certified as due to of M.E.). In diseases such as M.E., the blood-brain barrier is compromised, which allows toxins to enter the brain. Dr Mikovits mentioned, if I wrote this down correctly that XMRV in M.E. patients was triggered by the extremely widespread HHV6 and CMV. Catherine Norton showed some of her PhD research on the quality of life of people with Fibromyalgia, comparing it with the effects of Raynaud’s disease and Sclerodoma. Sufferers of the latter illnesses reported a similar lack of medical support to Fibro patients.

Two particularly heartening things emerged from the conference: in spite of recent controversies, Dr Mikovits pointed out that researchers have been spurred into looking at retroviruses, immunology, NK cells and the like, something that was not being done before. And Dr Goyal revealed the heartening new development that the Medical Research Council in Britain is beginning to fund biomedical research into M.E. and moving away from the psychatric model. As Dr Perrin noted that researchers and clinicians should start to create a united front so that the stranglehold of the anti-science brigade on the media could be loosened, I reflected that patients should alter our approach too. The person who accompanied me expressed her dissatisfaction with Greg Crowhurst’s presentation, which was dispiriting and negative. Suffering is a negative thing, but dwelling on this is disempowering in its tendency. I think we also need to address our issues from a position of strength and unity. Focusing on our individual stories and issues is a P.R. tactic that was necessary in its time, but I think the same end of making people realise just how serious are the problems that the illness brings us is now better served by looking at them dispassionately, as issues. Essentially, we need to depersonalise things for our own sakes, and to take the ammunition from the hands of – you know who.

On the subject of the Medical Research Council, I found this story from 2009:

It is an established fact that the MRC has a secret file on ME that contains records and correspondence since at least 1988, which, co-incidentally, is about the time that Simon Wessely began to deny the existence of ME.

The file is held in the UK Government National Archives at Kew (formerly known as the Public Record Office) and was understood to be closed until 2023, but this closed period has been extended until 2071, at the end of which most people currently suffering from ME will be conveniently dead.

As one puzzled ME sufferer recently noted: “why on earth have a 73 year embargo on these documents on an illness where a load of neurotic people, mostly women, wrongly think they are physically ill?” (MEActionUK@yahoogroups.com; 14th October 2009).

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2 thoughts on “Tullamore rings in the changes for M.E. and Fibro

  1. I was lucky enough to stay the night before because the 4 star hotel gave us an amazing discount on rooms – i knew i would never be able to get up that early otherwize. Yes there was a good bit of technical stuff and that is why i am ordering the dvd of the day – so i can sit in bed and choose which speaker to look at in my own time. I think those people who saw the video of Linda who actually was diagnosed with Fibromyalgia although her husband refers to it as ME (of course they are so similar as Dr Perrin pointed out and he also said we should stop fighting each other over terminology of names and support each other together). Anyway i know some claimed this video was depressing. I for one was so overjoyed that Linda had allowed herself to be filmed to show the doubters and the he who shall not be named et al, just how real the pain is and all the other associated symptoms. I was not phased because it was the truth. And i thank Linda and her husband so much for documenting her trying to cope – a rare honour to see into a patients real life. I agree with everything else and of course the fantastic notes and patient message from Dr Judy that are all available to us – i was dreading remembering my scribled bits of paper when i got home. But yaay it has been done for us.

    I cannot wait for the next conference – i met a huge amount of wonderful people, all suffering more or less the same it was such a fantastic feeling and i know i will never be alone again because now i know i can turn to the midlands fibro group’s help line – and of course i know the AONM will keep us informed of any new developments as they break.

    I take heart that so many people are now fighting for our cure in the medical world – it is not in our head or our mind, i felt validated and some hope for the future, maybe not in my life time but that is ok too as long as the efforts do not stop.

    Hotel was easy to get to by train for me. They looked after us so well. Doors were left open during speakers time and no one minded if we came and went as we needed to.

    I would advise anyone going next year to try and stay at least one night to eliviate the travel stress.

    Best to all xx

    sorry bout spelling or typos, u know what it is like.

  2. “Anyway i know some claimed this video was depressing. I for one was so overjoyed that Linda had allowed herself to be filmed to show the doubters and the he who shall not be named et al, just how real the pain is and all the other associated symptoms. I was not phased because it was the truth. And i thank Linda and her husband so much for documenting her trying to cope – a rare honour to see into a patients real life.”

    This is a good point: I think you are right that the stories of severely affected people need to be told, because they are so less able to tell them. The person I quoted was critical of Gerg Crowhurst’s part in it, and I quoted her because she is a carer as well as a sufferer.

    I definitely agree that staying the night would have been better, but even with a discount, staying on Saturday night would have been prohibitively expensive for us when you add the cost of the conference itself. There were no B&Bs within walking distance (as far as I could tell with maps) and the other hotels had seemingly increased their usual prices for that Saturday as well.

    Thanks for commenting. 🙂

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