The only report on the Invest in Me conference that I know about is the one I wrote 
I wonder if Mumsnet will allow such a long post? You can't have the graphics, I'm afraid, but they are not vital to the text.
All this is from my poor memory and limited notes. I hope I've reflected the presentations accurately, but I cannot guarantee it.
The evening before the conference, there was a presentation by Ian Gibson and Hilary Johnson at the Thistle Hotel in Victoria. About a hundred people attended, which was all the venue could hold, as we were seated at round tables spread with white cloths in preparation for the supper that was to follow the speeches.
Ian Gibson, the first speaker, talked about his career in Parliament and how the Labour Party re-started British science after 1997 . No mention of the expenses scandal that lost him his seat in Norwich, though.
Parliament is about personalities, he said, not evidence, which was a depressing thing to hear. He talked of the interface and conflict between science and politics.
He talked about the proposed ME clinic in Norwich, which is hitting some opposition, but he is still hopeful for. There was a presentation the next day, also about the clinic, which rang some alarm bells with me, which I will come to when I get to the conference report.
The take home from his presentation was that we need to win friends and influence people, and that a group of fifty electorates can make an MP sit up and listen. He told us how ignorant many neuro consultants are, and suggested that they could do with some education. Although it was not said in so many words, he implied that mass email campaigns are effective, if only to show the numbers of electors that are keen for policy on ME to change.
Hilary Johnson was a refreshing change. She said we had won over many allies since 2009, and she regretted the twenty years that have passed since DeFreitas, too, found a retrovirus, and importantly also the antibodies to a retrovirus, in pwME. That discovery was made at the dawn of the PCR system of finding bugs, and the implication was that DeFreitas's CAV may have been an HGRV, but the testing system was too crude at the time to be precise, Her samples were contaminated with Gibbon Leukemia Virus, another gamma retrovirus, later, while they were at the CDC.
Fortunately, Hilary said, Mikovits is not as naive as DeFreitas. The team that put the science study together donned CDC proof chainmail before publication. As you know, the Science study was in peer review for six months. In July 2009, about four months after it was submitted, John Coffin and Stuart LeGrice met up to discuss how to manage XMRV. Coffin was one of the peer reviewers. They were worried, and are worried, not so much about the CFS connection as by the lymphomas potentially cooking in 4% of the population. 10 million Americans. Hillary made that point a couple of times. She also said she sensed fear in Washington.
It was Anthony S. Fauci and Francis Collins who demanded the hold on the Alter/Lo paper. Hillary told us of a joke going round about Fauci, who has been pulling the strings at NIAIDS since 1984: It's Napoleon that has the Fauci complex! Fauci is a small, but very powerful man, and he is a lot of the reason for all the delays, lack of funding and misinformation we have seen in the ME/CFS field, according to Ms Johnson. And he is why ME/CFS has been confined to the funding, lab and manpower free zone that is the broom cupboard known as Women's Health.
I did not know that around the time DeFreitas made her retroviral findings, in 1991 in New Zealand similar discoveries were being made, and again, they found antibodies. Before the internet became universal, it was much easier to stifle research.
She warned us that HGRV's are more stable than Lentiviruses like HIV. They survive in low ph environments (think bleach, detergent) and may well be more contagious. Is this why Washington looks so nervous?
We should (well, the Americans should) demand a congressional investigation into Fauci and the relationship between HIV and XAND (or X-AIDS or...) which brings me to the next point - we need a new name. CFS is our slave-name, Hilary said, invented to belittle the disease, and ME looks selfish, or in the full version is an impossible mouthful. I asked Hilary what she had in mind, and it seems she thinks we should get our thinking caps on and agree on a new name. We need to reframe the disease, and break out of the straight-jacket that Wessely and the CDC put us into for all these decades.
The conference proper was held at No.1 Birdcage Walk, on the edge of Regent's Park The building was redolent of Victorian patrimony, magnificent and full of marble. We were seated in the lecture theatre, with its terraced bank of cramped red velvet cinema seats.
Annette Whittemore gave the opening address. She pointed out the funding discrepancies between ME/CFS and MS, with in one year MS getting $135 million, while ME got $6 million. No illness group gets less than us! Annette then said there were many parallels between HIV and ME, and MS and ME, and while HIV is harder to catch, it gets something like $16 billion a year.
The WPI originally went looking for a Herpes virus, and they have an open mind about ME/CFS causation.
David Bell (the darling) spoke next. Imagine a fit Father Christmas in mufti. He told us that there are ten good physical tests for ME that have existed for a long time. He then went on to talk about a recent follow up study he did on the Lyndonville cohort, mostly children and adolescents at the time of getting sick, since 1984.
Of the 210 people he assessed, when asked the simple question "are you still ill?" 80% said no, and 20% said they were. But when he looked more closely at the 80%, and used some objective measures of health, such as how long each day they remained active, he found that half were managing their energy carefully, and had obviously learned to cope with the disease. The 20% who said they were still sick, were really poorly. In all, of the original cohort, 72% were still suffering with ME/CFS, only 8% had truly recovered, and 20% were coping well, but still symptomatic to some degree.
David told us that ME is a biphasic illness, which starts severely and suddenly, slowly improves over five years, then gradually gets worse again...
I'm not sure if it was David or the next speaker, Dr Andreas Koglenik, that talked of the causation triangle:
----genetics
environment------vectors
Vectors being external pathogens like bacteria, viruses, poisons etc.
Dr Koglenick was a smart young man (anyone under 40 is young, to me) who was keen to tell us about his Open Medicine Institute, which is working with the WPI and others as a sort of database and clearing house for information of all kinds on ME/CFS. He's been working in the field for six or seven years, and is trying to help create a research/clinic reconnect. OMI is a data/network hub.
The problem with medicine today, he said, is that there is a cookie-cutter approach. While guidelines-based medicine appears to be effective and economical on the surface, it fails to find a cure, or be much help at all in many diseases, and therefore he believes that current and future technology will create better and cheaper pathways to treatment, using molecular medicine to accurately diagnose and prescribe for the individual.
There are unique dynamic response expression signatures available to define disease and test susceptibility to treatment. But we need to be aware that cytokines, for example, are difficult to isolate correctly. Poor sample handling can ruin results. My thoughts were that we are in the early days for a new system of diagnosis and treatment that may give brilliant results in the future. I was heartened by the enthusiasm of Dr. Koglenick, and his obvious skill using new technology to unscramble the puzzle that is neuro-immune disease.
John Chia was the next speaker, focussing on enteroviruses. Apparently, 35% of pwME are Enterovirus Positive. The more EV's in one's body, the more sick one is. He went on to talk about the TH1/TH2 immune profile seesaw. pwME are TH2 biased, and for that reason find fighting pathogens difficult. TH1 bias is more effective at resisting disease, but in the process creates pain and inflammation. I was pleased to hear him include herbal immune boosters in his list of useful treatments, as I have found Allicin and Cats Claw very helpful in reducing pain and improving cognition, although many find they get an adverse reaction, at least to start with. Other treatments he spoke of included immunoglobulin, which can ameliorate inflammatory symptoms in less than 1/3 of adults patients, but may be more effective in pediatric patients and those with severe myalgia. Alpha and Gamma interferon combined can induce short-term remission in about 45% of debilitating myalgic ME, but is expensive and often poorly tolerated. Oxymatrine or Equilibrant helped 52% or 700 ME/CFS patients, but most suffered temporary worsening at the start of treatment. It is helpful to start low and build up with these two therapies.
Professor Geoffry Burnstock was next. His talk was on Purinergic Signalling, and I must admit most of it went right over my head I was particularly confused with the frequent mention of ATP, which I had understood was the energy molecule sent out by the mitochondria, but Burnstock said it came from many different cell types. He talked of rats, and how their tumors reduced in the presence of ATP. His wife wrote this poem:
A busy bee called ATP
Whose wings were full of energy
who worked and built inside the cell
emerged to see what he could tell.
And no, I don't know what that means, either. Sorry.
Dr James Baraniuk spoke before lunch. By now my brain was dying, and I am ashamed to say I skived out for a lay down. Those seats were far too cramped!
From the Journal of IinME, I can tell you he is studying proteomic (protein) differences between veterans with Gulf War Illness (GWI) and healthy veterans. Of the 750,000 GI's that went to the first Gulf War, 1/3rd, or 250,000 now have GWI . The theory is that GWI may be realated to a certain genotype for an enzyme that degrades two of the body's important antioxidants, one of which is Carnosine.
They are conducting a CFS study also, similar to the GWI one, but including spinal taps because they believe that increased spinal pressure could be associated with CFS symptoms, and so they are measuring spinal fluid pressure.
The current hypothesis is that specific proteins are seen in the spinal fluid of CFS and GWI patients but not in healthy controls.
We all trouped out to feed our needs at lunch, some catching time laying flat in the rest room, others straight to queue for their meal, all queuing for the loos. There were only few places to sit down to eat, which posed a problem for many poorly people. The food was OK. The last piece of cheesecake was nabbed by a person who turned out to be the last speaker of the day, the representative from the BMJ.
The first post-prandial lecture was from Simon Carding and Tom Wileman from the University of East Anglia. They divided their explanation of the involvement of the gut in the immune system between them. The GI tract walls are our first line of defence against pathogens. The importance of a flora balance in the gut was explained, and the connection to emotional feeling that are in part due to the situation in the gut. The term 'gut feeling' is based in fact, they said.
Oystein Fluge and Olaf Mella gave the next presentation. They are Norwegian oncologists, cancer specialists, and are conducting a trial with a modified chemotherapy regime. I personally have heard of two people who's ME has gone into remission after chemotherapy. And I have an acquaintance taking Rituximab, another auto-immune disease, Arthritis. I have removed the details of this talk, for confidentiality reasons.
Kenny DeMeirler spoke next. He began with a long list of the biomedical tests that show abnormalities in ME/CFS. I list the ones I made legible notes on here.
Blood sedimentation rate is 1-2mm per hour (normal range 12-23mm/hour)
Thrombositosis
Eosinophilia - whatever that is
Low Uric acid indicating a shift to a TH2 immune profile
Copper/ceruloplasmin raised
AST/ALT raised (indicating immune activation)
Gamma GT
D3 levels abnormal
Alcaline phosphates lowered
abnormal Ferratin - can be raised or lowered
Ig1/Ig3 lowered
Abnormal protein electrophoresis
Lymphocytes down to half normal
CD4++ lowered
NK cells altered
B cells can be up or down from normal
CD14 raised in 90% of cases (correlates to severity)
C4a up in 80%
Perforin mRNA abnormal
Low stool IgA in 98%
A large number of ME/CFS early morning urine samples were tested, and the results showed 80% with a TH2+ or ++ profile.
Anything you are curious about here, Google can help with. Phew!
Kenny went on to talk about the ongoing GcMAF trial, where some patients are responding favourably and some find no change. GcMAF/redox is a cryptic note I made myself that I cannot decipher now. We await the final results.
Next, the star of the show, Judy Mikovits in person. Also known affectionately as motormouth, Judy speaks at a rate only a top shorthand reporter could keep up with. XMRV is a simple retrovirus, with more in common with HTLV. Judy worked on HTLV at one time. 5 to 8% of people infected with HTLV go on to develop disease. XMRV preferentially integrates in CpG islands, it is the first RV to be known to do so. It activates microglia and creates a different cytokine signature than PMuLV's, a closely related RV. B cells (again) may well be the reservoir of XMRV.
Hormones and inflammation upregulate XMRV. Perhaps more than 20 million Americans are infected (at 8% developing disease, if it is the same as HTLV, thats 1.6 million ill with XMRV related illness - my extrapolation).
I wish I'd managed to capture more from Judy's stunning presentation. I believe it was very similar to her presentation in Belfast a couple of days later, that is reported on Dr. Speedy's blog. So as a way to cover my inadequacies, here's a link to the photo journal report
niceguidelines.blogspot.com/2...erday-was.html
Next was Dr Beiger's presentation of an XMRV study in Germany. As this is not yet published, we were asked not to reveal the details. It is not certain that this is a positive, or a negative study from the information we were given. I have to end this bit here.
Finally there was a question and answer session with all the days speakers on stage. In response to a question about definitions, Kenny DeM told us that a new version of the Canadian Consensus Criteria has been written, and is about to be published. Right at the end of the long dias table, as far away from Richard of IinME's podium as it was possible to be, sat a face we had not seen before.
Invest in ME always send out invites to medical journals like the Lancet and the BMJ, and they usually decline but the BMJ this time were kind enough to send as their representative the Deputy Editor. After a few written questions, which were forgettable enough, she stood up to speak. She introduced herself as Dr Trish Groves, a psychiatrist.
She said she thought our conference was concentrating on the wrong field, and that the presentations were too complex to follow. She asked if she was the only one with this problem, and the audience responded in the affirmative. She said we would get more papers published if we followed a few rules, and that she would be happy to come back next year to tell us how to do it. Well thank you ma'am!
Well. I was gobsmacked, though in hindsight it is progress to get one of the medical journal's editors to the conference at all. And many in the audience were angry. There were some lively comments, as you might imagine, and then Annette Whittemore managed to close the conference on a positive note. What a star she is!
resources.bmj.com/bmj/about-bmj/about-bmj/editorial-staff/trish-groves