'I watched the ME Conference DVD at the weekend. I have to confess that I cried all through the first DVD. Living with ME, you get so used to putting up with ignorance and misunderstanding, and so to hear a group of people gathered together in one room talking about ME sensibly, was just totally overwhelming.

I can't thank you and everybody else enough for organising this event and for all the other work that you do.'
 

'Dear IiME,

 Thank you all for the hard work that went into making the ME Conference 2006 such a success. It was a huge undertaking and I am just so pleased that it was a success.

 I have just finished watching the conference on DVD for the second time and it was just like being part of the audience. The DVD recording equally professional.

 The ME experts were excellent and able to speak to their audience in an informative and enjoyable manner.

 What struck me most about all the speakers was their genuine commitment to their patients, research or charity work. Although all working in slightly different areas, they all share one common bond…..working towards finding the cause and cure for M.E.

 Having watched the DVD I am so glad that there are still medical, charity and research professionals who are genuinely committed to helping ill patients.

 It is so refreshing to learn that doctors such as Bruce Carruthers and Byron Hyde still exist in our modern “evidence based” medical world. These doctors believe in listening to their patients and investigating their symptoms. They do not write patients off.

 Thank goodness for researchers such as Professor Hooper, Professor Puri and Dr. Kerr who have had the strength of character to persevere and continue to research M.E, an illness which has been denigrated by so many other researchers.

 And of course, Jane Colby, a dedicated charity worker who spoke with such passion about the children who suffer M.E and need so much help to convince social services and local education authorities that they are physically ill.

 The most moving moment in the DVD came when Mrs. Criona Wilson spoke about her daughter, Sophia Mirza. I thought that she was very courageous to stand up and speak so honestly about her daughter’s brave battle with M.E. and subsequent death. The medical professions ignorance and lack of compassion towards Sophia and her illness was truly shocking.

 Dr. Gibson spoke openly with regards to the inquiry into M.E. I hope that his report will reflect the true biomedical nature of M.E.

 Finally, may I say “Thank you” to the team members who were in charge of ordering, packaging and posting the DVD parcels. This must have been a mammoth task in itself!'

'This (the dvd film) is such a great idea for those of us who simply didn't have the energy to attend This is a very informative web site. Many thanks.'

'Thank you so much for the wonderful Conference last Friday. I came away feeling more positive about the future for people with ME (my two children aged 17 and 13 have been diagnosed with it) than I have since they became ill.'

'I attended the conference last Friday and had a great time – I enjoyed the event a great deal and felt that it was a huge success – you should be very pleased.'

'Many thanks for your help and many congratulations again on an excellent event.'

'Thank you for your message and for such a wonderful conference. For some of us, it required a lot of effort to continue until the end, but it was worth it.'
 

'Thank you for organising a great conference. Do you have the correct address of Dr Byron Hyde as I would like to write to say thank you for attending and speaking. Thank you so much.'

Conference Venue: V Good

Conference Organisation: V Good

Catering: Average

Presenters: Excellent

Length of Presentations: V Good

Value of Presentations: Excellent

Comments: I feel that there was inadequate rest facilities for PWME- the noise + crowding of the rooms used for breaks, along with the lack of seating was hard to cope with, also queuing for refreshment/food. The seats in the hall were good as they were high-backed

Speakers were excellent- I hope there will be another conference next year. well done for organizing such a great event

'...congratulations for the conference. I thoroughly enjoyed it'

'Thank you to you guys for organising it. My father and partner were very impressed by the organisation on the day, the venue, the helpful people there and the informative speakers. I am now reading all the buff they bought back to me! Having worked in event organisation in the past i know what a nightmare it can be! Well done and i look forward to hopefully attending next years conference! '

'The conference was fantastic, beautifully organised and executed. I'm buzzing with new ideas and boring my family rigid with it all. Thank you'

'all congratulations on organising the conference. Wish i could have been there'

'To all who helped to organise the conference and freely gave their own time and efforts so that it could happen - a big thank-you (and I'm sure I speak for others too). It was very inspiring and I hope that it can be the first of many, each with increasingly better news about the progress of research.'

'Thanks for organising the event, it's reassuring to know that things are happening still.  I am fortunate that with a very supportive wife, family and (eventually) GP, my symptoms are under control, but I know there are many who have not just the problems of ME but the even more difficult problems of prejudice, misconception, disbelief and self doubt.  Keep up the good work, and thanks again.'

'Thank you for the marvellous conference'

'ME CONFERENCE 2006 One of the key events of National ME week was the 2006 Conference, held in London on 12 May.

Rather an early start for ME patients - they wanted us registered and in position by 9am! We did the best we could and it was worth the effort in order to listen to a selection of top speakers in the field.

It was interesting to be in a mixed audience of ME patients/carers and doctors. I arrived during the second item: Dr Bruce Carruthers' talk on the importance of diagnostic criteria. He is the principal author of the Canadian Criteria , officially known as ME/ CFS: Clinical Working Case Definition, Diagnostic and Treatment Guidelines. A Consensus Document. He sees the diagnosis and treatment of ME as arising from a clinical approach through which patient and doctor work together to take a thorough history, exclude a number of other conditions, tie down the symptoms, estimate their severity, develop a treatment programme, manage the treatment - modifying as necessary and prevent secondary symptoms (such as depression). Dr C believes that this process explores the illness, revealing ME to be a "dynamic and interrelated entity". An overview of the Canadian document was available for delegates.

 Professor Malcolm Hooper (Emeritus Prof of Medical Chemistry) came next. He pointed out the overlapping symptoms of ME, AIDS, Gulf War Syndrome and chemical poisoning - all affect the neurological, immune and endocrine (hormonal) systems. He stresses that these illnesses were clearly of the body not the mind and showed slides of how an ME patient's body reacts to exercise by generating vast numbers of free radicals. Spectroscopy was a useful tool for looking at the chemistry of the cells undergoing what he referred to as an "aberrant immune response". Organs malfunction such as the heart which gets an uneven blood supply and the liver which cannot get rid of toxins efficiently, The penetration by the virus of the blood- brain barrier has a number of outcomes and the brain fog which we experience can be understood from scans of brain activity.

Jane Colby, former head teacher, ex-ME patient and Chief Exec of Tymes Trust spoke passionately about the plight of children with this condition who are wrongly advised to put education before health with the consequence that health rapidly worsens, thus undermining education completely. Her research points to the high numbers of young people affected, clusters of ME and a profound lack of understanding - in extreme cases parents were accused of Munchausen's-by-proxy. On the positive side, an interactive teacher training programme on ME will be available from September 06 and the Learning and Skills Council is producing on-line courses for 16 + age range.

After lunch we moved on to Dr Byron Hyde, whose talk was backed up by a booklet entitled A Brief History of ME and an Irreverent History of CFS. A clear distinction was made between the two conditions, the latter often being mistaken for undetected major diseases (15 were listed in the booklet). He traced several case histories of people who developed ME, highlighting out a range of pre-conditions and even presenting a `recipe for ME' which included professions where you come across a lot of infections (`school child' could be included in this!); repeated exhaustion; immunization immediately followed by travel abroad. His point being that the immune system is already under stress when you encounter the virus/chemical cocktail etc.

Dr Hyde traced the development of ME through Primary Infection Phase, Chronic Phase, Testable Brain Changes, Pain Syndromes, Major Sleep Dysfunction, Muscle Dysfunction, Vascular Dysfunction, Endocrine Dysfunction. He observed that often more than one family member became ill.

Dr Jonathan Kerr is researching gene differentiation associated with ME. His was a technical presentation that showed the process at cellular level and tested the hypothesis that a number of genes involved in 6 key areas of body function are affected. Mass spectrometry showed unusual peaks in samples of blood. It is hoped that his insight into the mechanisms of the disease will point to treatment associated with ME. He has designed a trial which will test the use of interferon beta on patients with ME - this drug should enhance the immune system, help T Killer cells become more effective, is anti-viral and has a good safety record.

Finally a man known to those of us who take the EPA fish oil supplement, Prof Basant Puri. He started by describing how sophisticated MRI scans show that there are raised choline levels in brains of ME patients - this demonstrates that they are not making sufficient fatty acids. He then briefly went over the process described in his book which shows how this can be corrected by taking EPA + appropriate vitamin and multi-mineral supplements while admitting that this is not the whole picture. Whether ME is caused by a virus or a bacterium (such as Borrellia) the symptoms seem to die down but in fact the organisms have been multiplying and have migrated into the brain. Now established, they merely await a trigger to spring into life causing a chronic condition. Prof Puri believes that certain complementary therapies are helpful, in particular Alexander Technique and Perrin Technique, the latter is a type of massage that focuses on lymphatic drainage. In fact Mr Perrin, an osteopath, was in the audience and able to supply information on how he works to stimulate neuro-lymphatic drainage and to lessen the inflammation in the spine.

The Open Forum began with the heart-breaking contribution of a mother whose daughter with ME had been sectioned, following the police breaking down the front door, and received wholly inappropriate psychiatric treatment. After a fight the family got her back home. The daughter died, age 22 when she became unable to take food or drink. I left at this stage so cannot comment on possible topics for further research that will have emerged from this interactive session.

CONCLUSIONS
So what are the main points that came out of the day?

'I just wanted to get in a quick note to tell everyone how successful I believe the London M.E. Conference was on May 12.

The speakers were well-chosen both for their deep knowledge and understanding of the illness, and to give a broad representation of different issues involved in understanding M.E. today.

I did get to meet Dr. Ian Gibson, Member of Parliament, in person, and I only wish we had someone on Capitol Hill in Washington who would start an inquiry into the reasons that M.E. somehow became "CFS" in the United States. I have high hopes that the Gibson Inquiry in Parliament will help put support for M.E. back on the right track.

It was a lot of fun to meet people I have known for years on internet - though it was also sad, because many are too sick to come out any more. It only served to remind me of the urgency of the mission to tell the world about M.E., to learn how it is caused and the best way to treat it, and finally to come up with new testing and treatments through support for good, solid, sound, unbiased scientific work.

Dr. Ian Gibson, Member of Parliament, spoke about the progress of the Gibson Inquiry. He was followed by Dr. Bruce Carruthers, who explained the ME-CFS Consensus Documents (and provided all of us with copies of the summary version). Dr. Carruthers' summary can be found at this website:

http://www.mefmaction.net/Default.aspx?Page=Overviewphysiciansguidelines

After a break, Professor Malcolm Hooper gave an excellent summary of the state of biomedical research today. Prof. Hooper stressed in particlar the damage that the so-called "biopsychosocial" model of M.E.-CFS has done to patients. Both doctors and patients are being told not to listen to what the patient knows about his/her own body, not to trust how the patient feels about his/her own body, and not to trust the patient's own thoughts about the illness. In other words, the patient becomes an inanimate, inchoate Thing.

He continued to show that here is no hard evidence that Cognitive Behavior Therapy and Graded Exercise Therapy (CBT and GET), the only treatments to come out of the "biopsychosocial" school, actually works. In fact, studies have shown they have been dismal failures when used on the group of patients in the UK who call themselves the "twenty-five percenters" because they are the subgroup of M.E. patients who become so ill for so long.

Jane Colby, who published a pathbreaking book on ME-CFS in children in 1996 and continues to research the problem, talked about the problems that children in the UK are having with recognition of their illness and special needs. I found her current work on clusters outbeaks among schoolchildren to be very interesting and promising. She said that the outbreaks follow the same pattern of polio outbreaks decades ago. I thought it was a brilliant idea to follow the geographical design of outbreaks among children - much easier than doing so among adults, and I believe this research is going to provide us with a lot of information about how this disease works. We heard the hearbreaking story of yet another unnecessary and young death, beautiful young Sophia who could not get a doctor who would treat her disease as something other than psychosomatic, and after a horrific experience of being committed unwillingly to an institution, eventually died last year of what can only be called medical neglect at the young age of 32.

After lunch we were treated to Dr. Byron Hyde's description of the development of M.E. and CFS; the deep problems presented by various CFS research definitions; and what we already KNOW bout the pathophysiology of this disease. Dr. Hyde emphasized that fatigue cannot be the defining criteria for the disease because profound fatigue is a characteristic of ALL major illnesses. The single defining symptom of ME-CFS is BRAIN DYSFUNCTION. If a patient doeds not have CNS dysfunction, they do not have M.E.

Dr. Jonathan Kerr presented a fascinating description of his own current genome research, separate from that of the CDC. I was pleased to hear that while all of the patients in the study fit the Fukuda and CDC current definitions (so the research can be compared with that in the U.S.), Dr. Kerr was careful to include patients who were bedridden - the type who do not normally end up in studies because they can't come out to the clinic.

I want to write about this study in more detail later, but I was convinced after the formal talk - followed by a private one - that he has succeeded in finding usable markers that will help demonstrate the physicality of the illness at the same time it leads to markers to diagosis it, and help lead pharmaceuticals to be able to develop treatments. Dr. Kerr is following his first, small study with a larger one, but thus far he believes he will be able to demonstrate conclusively that ME-CFS is a multi-systemic disease, and that Interferon-B may be able to help.

Professor Basant Puri's presentation on lipid neuroscience was a bit difficult, but interesting. Using multi-nuclear SPECT topography he has been able to find that patients with M.E. have raised levels of cholin, CRr/PCr, and NAA, which is in line with what some other researchers are finding, specifically Chaudhuri (2003), using proton neurospectroscopy, and Tomoda (2000).

The speakers at the conference were all very clear and informative - The conference sold out, so every seat was taken, and I got into trouble for making too much noise typing (couldn't find any place to hide) - so I'll have to decipher my handwritten notes and my handwriting, I am afraid, leaves much to be desired.

I have jetlag - and tied-lag from just getting to be in London! - so it may be a week - but I promise everyone a good thorough report.

Of course, in the meantime there could be one come out on the Invest in M.E. website, which is here:

http://www.investinme.org/

I could not complement this group more - they did a terrific, professional job. My heartfelt thanks to all the speakers, who gave their time freely to this project. I am so grateful I had an opportunity to attend. '

'Thought I'd offer my two penny's worth feedback on the really good Invest in ME Conference held yesterday in Birdcage Walk, Westminster.

People came from all 4 corners of the country and some from abroad too and the sun shone beautifully. It was a pleasure to put faces to many names I only see in print though there was very little break-out time as all the speakers over-run!

Invest in ME, who organised it, did a really good first-time job.

Professor Malcolm Hooper was a really entertaining speaker and very down to earth as was Dr. Byron Hyde of the Nightingale Research Foundation. I was a bit mentally challenged though by the talk given by Dr. Bruce Carruthers, Principal Author of the Canadian Guidelines, but Dr. Ian Gibson, MP for Norwich North and chair of the Inquiry into ME, had us all in stitches.

As for the guest speakers' presentations - they were riveting - quite scientifically complex but all were refreshingly reassuring, factually fascinating, and, most importantly, there was a firm consensus as to what ME really is - a legitimate physical illness - as well as a heartwarming unanimous condemnation of those who are scuppering our work, whether they be politicians, scientists, educationalists, policy makers or economists.

Most of this can be put down to ingrained prejudice and the usual "all in the mind" suspects plus a huge luck of funding. The term ME met majority approval with a lot of mention about subsets and the damaging effects of using the umbrella term CFS. Nothing new there of course but great to hear when it's said by all these leading scientists as well as Prof. Ian Gibson himself (who's account of his Enquiry was really interesting and very humorous).

Jane Colby's talk was excellent and her history of how the Education Establishment failed so many youngsters was like a perfect description of what my own daughter went through when she was of school age. The Tymes Trust's latest initiative to train teachers about ME sounds wonderful. From the floor we heard the heart wrenching and disgustingly shameful account, tearfully told by the devastated mother of a young PWME who tragically died due to her doctors' ignorance and prejudice. There were discussions on chemical poisoning, comparisons with other major illnesses and many negative comments about Simon W., CBT and GET and all the usual suspects with solid research to back it all up.

Definitive treatments were thin on the ground, but Prof. Puri talked about the importance of taking VegEPA with an nutrient rich diet and there was a feeling from listening to Dr. Jonathan Kerr. that a drug to fight ME, probably already in existence and being used for other illnesses, would, one day, be forthcoming thanks to the excellent gene research being undertaken.

Though at the end each member of the panel was asked what it is that, in their opinion, is really needed, the answers were rather utopian and I wished that grass root reality at had been addressed e.g.. finding a knowledgeable and sympathetic GP, the whole Benefits issue, treatments available through PCTs, etc. etc. I longed for a concluding, umbrella resolution as to how to organise and coordinate what is being done by all the individual pockets of excellence and everyone's heard work throughout the country. In fairness though, the title of the Conference was "An Update on Clinical Diagnosis, Research Trends and Educational Support".

I guess that is still too far off in the future and we have to be patient and wait for the Gibson Enquiry to report back on its findings. But, exhausting as it was - I got up at 5.15 and got home at 8.00pm (and I don't have ME!) I think it was a huge success and very smoothly run. Well done to all those PWME who managed to get to the splendid venue, sat through the whole day and then somehow got home again! '