My feelings on the news that a second serious study has backed up the WPI results for XMRV remain mixed. In this I seem to find myself in the minority amongst a huge outbreak of joy. After all, the news is good, right?
So why I am feeling so uneasy about it?
Well, for one, this wasn't an official announcement. It wasn't publication of the study. It was a leak, saying that such results would be officially announced 'really soon'. Where a leak gets splashed like this (as it were), someone's running an agenda. Whether you consider the agenda benevolent or malevolent, isn't really the point. Why was this 'announcement' made? To put pressure on the people who did the study? If so, is it an attempt at sabotage, or an attempt to force them into publishing fast? Maybe someone worried they would cave to pressure to play down their study, or keep it quiet, and wanted to force their hand.
Whichever it is, one thing seems clear - the people leaking this stuff aren't necessarily putting the wishes of the people who did the study first - and one has to wonder how happy that will make them about doing such studies in the future, and how impressed it will make them with ME campaigners. These, I think, are people we want to keep 'on our side'. Trying to bounce them into publishing on someone else's schedule seems not only rude but potentially self-defeating. I'm already seeing comments blaming them for the awful pressure people with ME are under waiting for the official announcement. Which is unfair and stupid - that pressure hasn't been created by them, but by the people who 'leaked' and created all the huge expectation of (and pressure for) an imminent announcement.
Not to mention, now this leaked info is out there, 'the enemy' has been given time to prepare the inevitable attacks and rubbishing of the study before it's even been published. Not too bright, you might think - though having been unable to resist passing it on via this blog, I can't really throw stones.
And then I worry about the sheer amount of hope and delight that has been generated by something as yet unconfirmed. Understandably, people are over the moon about this. Our hopes, after all, have taken such a beating since last November, with quickie studies rushed out to rubbish the WPI results and tell us to stop hoping. Our 'leakers' must have known perfectly well the emotions and expectations they would stir up. If the looked-for confirmation does not come (and people have been looking for it every minute since the announcement was made five days ago), hope will be shattered for so many, with all the detriment to their fragile health that entails. And the responsibility for that will fall squarely on the shoulders of those who chose to make a big splash with this leak.
If good news - the best, in fact - is coming, then of course I'm happy. I'm already wondering about blood tests, how we might manage them on our budget, how one even goes about sending blood to America. I can't help it, and neither can anyone else longing for cause and possible cure to be established. But on the whole, I'd have preferred to hear about this after the study results were officially published - and not see everyone stirred up so hugely over something we don't have yet and may not get.
I'm aware of how grouchy and negative that all looks. But back in November when the WPI results were announced, I read something that reduced me to tears: one poster, in the rush of joyous comment posted saying she was getting tested for XMRV just as soon as she could. And, she said, if she tested negative, she would kill herself, because this was her last chance for a cure.
That's the strength of feeling that is being played with here - and I just can't feel comfortable with it.
Sunday, 27 June 2010
Friday, 25 June 2010
And who, exactly, decided this?
Reposted from Stonebird . No, I'm not happy that an association firmly in the GET camp despite all evidence for the damage it does, is now calling itself'the sole training provider for all NHS staff in "CFS/ME". How long is OUR money going to go on being used to spread ignorance and downright untruth to medical staff?
BACME ?? Who ??
Greg Crowhurst
(permission to repost)
BACME : the " British Association for CFS/ME" ...who ??
On a nightmare day of horrible physical suffering, on a day of somehow getting through and maintaining some shred of sanity, we come across late last night, wi this posting from the West Midlands ME Groups Consortium on BACME, the unaccountable organisation that has all of a sudden seems to have set itself up as the sole training provider for ALL NHS staff in "CFS/ME"
http://www.meassociation.org.uk/images/stories/wmmeg_statement_june_2010.pdf
My wife's reaction was immediate and fierce .
So this morning I try and find out about BACME.
Not easy for there's no apparent website.
In charge , apparently is Esther Crawley who is " a leading supporter of CBT/GET and is dismissive of the regular and consistent patient reports which identify adverse effects; she is now Medical Adviser to AYME (Association of Young People with ME), which has adopted the psycho-social model and actively promotes CBT/GET. "
(Margaret Williams http://www.meactionuk.org.uk/A_NICE_DILEMMA.htm)
Her Deputy , as far as I am aware, is Alison Weardon of the FINE trial.
Here's the thing : I am a Registered Nurse with several peer reviewed Nursing articles to my credit, I am also a fully qualified Trainer - having run my own training company throughout the NHS for over 8 years. My knowledge of Severe ME, is gained through 17 years of caring experience, publications and advocacy, however BACME would not accept me as a trainer, ,even if I could work, which I can't, for it seems that they will only accept as "patient representatives" those who subscribe to NICE Clinical Guideline "53" : something I could never do .
NICE Clinical Guideline "53" : that's the the one which relied upon an evidence-base of just one systematic review that comprised only 18 clinical trials, not all of which were random controlled trials (RCTs), of which just five were RCTs of CBT and a further five were RCTs of graded exercise therapy, making a grand total of just 10 RCTs, all on a patient base of just 1,448 patients who may or may not have had ME/CFS; that's the one which rejects the WHO formal classification of ME/CFS as a neurological disorder; that's the one which ignores the international evidence that ME/CFS is a biomedical, not psychiatric, disorder; tha's the one which proscribes appropriate testing for ME patients ; that's the one which is condemned by virtually all patient groups as "unfit for purpose.
(cf Margaret Williams http://www.meactionuk.org.uk/A_NICE_DILEMMA.htm)
As a struggling husband I am concerned that , according to the West Midlands ME Groups Consortium , "the severely affected with ME appear to have no representation whatsoever" on BACME. Thank God is our reaction; as long as they are not doing any training for severe ME !
For you would not want the severely affected to be involved in any way in advocating CBT and GET -mot that you'd find anyone with genuine ME who would, beause they are dangerous and do harm !
The FINE trials themselves show no advantage or efficacy whatsoever to the use of CBT and GET for the severely ill. So how can BACME justify training people in it ?
"How dare they ? How dare BACME presume to speak up for people with ME " ? my wife asked last night, furious at the apparently unstoppable , ongoing indoctrination of clinicans in methods that case harm to genuine ME patients .
After all these years of struggling to care for my wife who has very severe ME , I am so very tired of the endless fudging or pretending to meet the needs of people with ME, by organisations like BACME, who actually work to a psychiatric paradigm , based upon pseudo-science and flawed patient selection criteria.
Who has given BACME the authority and the right to claim to be the sole ME training provider for the NHS ? What's happened suddenly to the free market and competition? What's happened to the biomedical truth of ME ?
If you only have one provider, saying they are the sole provider and they are excluding the biomedical model, this is dangerous for people with ME, who have realy physical dysfunction and who will be made ill by the promotion of these regimes as treatment, when they simply aren't.
We are shocked and horrifed . Surely this needs challenging ?
BACME ?? Who ??
Greg Crowhurst
(permission to repost)
BACME : the " British Association for CFS/ME" ...who ??
On a nightmare day of horrible physical suffering, on a day of somehow getting through and maintaining some shred of sanity, we come across late last night, wi this posting from the West Midlands ME Groups Consortium on BACME, the unaccountable organisation that has all of a sudden seems to have set itself up as the sole training provider for ALL NHS staff in "CFS/ME"
http://www.meassociation.org.uk/images/stories/wmmeg_statement_june_2010.pdf
My wife's reaction was immediate and fierce .
So this morning I try and find out about BACME.
Not easy for there's no apparent website.
In charge , apparently is Esther Crawley who is " a leading supporter of CBT/GET and is dismissive of the regular and consistent patient reports which identify adverse effects; she is now Medical Adviser to AYME (Association of Young People with ME), which has adopted the psycho-social model and actively promotes CBT/GET. "
(Margaret Williams http://www.meactionuk.org.uk/A_NICE_DILEMMA.htm)
Her Deputy , as far as I am aware, is Alison Weardon of the FINE trial.
Here's the thing : I am a Registered Nurse with several peer reviewed Nursing articles to my credit, I am also a fully qualified Trainer - having run my own training company throughout the NHS for over 8 years. My knowledge of Severe ME, is gained through 17 years of caring experience, publications and advocacy, however BACME would not accept me as a trainer, ,even if I could work, which I can't, for it seems that they will only accept as "patient representatives" those who subscribe to NICE Clinical Guideline "53" : something I could never do .
NICE Clinical Guideline "53" : that's the the one which relied upon an evidence-base of just one systematic review that comprised only 18 clinical trials, not all of which were random controlled trials (RCTs), of which just five were RCTs of CBT and a further five were RCTs of graded exercise therapy, making a grand total of just 10 RCTs, all on a patient base of just 1,448 patients who may or may not have had ME/CFS; that's the one which rejects the WHO formal classification of ME/CFS as a neurological disorder; that's the one which ignores the international evidence that ME/CFS is a biomedical, not psychiatric, disorder; tha's the one which proscribes appropriate testing for ME patients ; that's the one which is condemned by virtually all patient groups as "unfit for purpose.
(cf Margaret Williams http://www.meactionuk.org.uk/A_NICE_DILEMMA.htm)
As a struggling husband I am concerned that , according to the West Midlands ME Groups Consortium , "the severely affected with ME appear to have no representation whatsoever" on BACME. Thank God is our reaction; as long as they are not doing any training for severe ME !
For you would not want the severely affected to be involved in any way in advocating CBT and GET -mot that you'd find anyone with genuine ME who would, beause they are dangerous and do harm !
The FINE trials themselves show no advantage or efficacy whatsoever to the use of CBT and GET for the severely ill. So how can BACME justify training people in it ?
"How dare they ? How dare BACME presume to speak up for people with ME " ? my wife asked last night, furious at the apparently unstoppable , ongoing indoctrination of clinicans in methods that case harm to genuine ME patients .
After all these years of struggling to care for my wife who has very severe ME , I am so very tired of the endless fudging or pretending to meet the needs of people with ME, by organisations like BACME, who actually work to a psychiatric paradigm , based upon pseudo-science and flawed patient selection criteria.
Who has given BACME the authority and the right to claim to be the sole ME training provider for the NHS ? What's happened suddenly to the free market and competition? What's happened to the biomedical truth of ME ?
If you only have one provider, saying they are the sole provider and they are excluding the biomedical model, this is dangerous for people with ME, who have realy physical dysfunction and who will be made ill by the promotion of these regimes as treatment, when they simply aren't.
We are shocked and horrifed . Surely this needs challenging ?
Thursday, 24 June 2010
Testing, testing...
After yesterday's news, a lot of ME sufferers (myself included) have switched from hesitating to deciding to try somehow for an XMRV blood test. Naturally, this will have to be privately done and paid for.
By a remarkable coincidence, the BBC news site today carried an article on how NHS doctors are asking the government to clamp down on private medical testing and screening.
Hollow laughter form this blogger at the following sentence:
They claim private tests can be unreliable and inaccurate, and offered without the sound evidence base behind NHS screening.
(my emphasis)
That would be the sound evidence base that forbids such horrors as testing possible ME patients for Coxsackie B, would it? That doesn't want us to have the tilt table test in case it proves there is a problem with our brains - oh sorry, I mean, 'because it is so unpleasant for the poor dears'.
There's also a vague accusation that private tests are somehow 'unreliable'.
Total absence of any of these doctors calling for more testing to be available via the NHS so that we wouldn't have to go to private medicine in our search for answers and decent treatment. Funny, that.
And the timing is dashed odd.
By a remarkable coincidence, the BBC news site today carried an article on how NHS doctors are asking the government to clamp down on private medical testing and screening.
Hollow laughter form this blogger at the following sentence:
They claim private tests can be unreliable and inaccurate, and offered without the sound evidence base behind NHS screening.
(my emphasis)
That would be the sound evidence base that forbids such horrors as testing possible ME patients for Coxsackie B, would it? That doesn't want us to have the tilt table test in case it proves there is a problem with our brains - oh sorry, I mean, 'because it is so unpleasant for the poor dears'.
There's also a vague accusation that private tests are somehow 'unreliable'.
Total absence of any of these doctors calling for more testing to be available via the NHS so that we wouldn't have to go to private medicine in our search for answers and decent treatment. Funny, that.
And the timing is dashed odd.
Wednesday, 23 June 2010
XMRV - day of truth?
Hillary Johnson has just posted this on her Osler's Web site:
I received a call today from an investigator at a major American university who is involved with XMRV research. He is the second reseacher-scientist to have advised me in as many weeks that a major research paper is about to be published in which the conclusions reached by the authors of the Science paper of October 9, 2009--which linked the gammaretrovirus XMRV to chronic fatigue syndrome and proved it was infectious--have been replicated. In addition, it seems the new data may be even stronger. In other words, the positivity rate among chronic fatigue syndrome patients may be significantly higher. In addition, silent or latent infections in the general population may be, in this new data, as much as twice as high as originally reported in Science.
THE BIG ONE, JUNE 22, 2010:
I received a call today from an investigator at a major American university who is involved with XMRV research. He is the second reseacher-scientist to have advised me in as many weeks that a major research paper is about to be published in which the conclusions reached by the authors of the Science paper of October 9, 2009--which linked the gammaretrovirus XMRV to chronic fatigue syndrome and proved it was infectious--have been replicated. In addition, it seems the new data may be even stronger. In other words, the positivity rate among chronic fatigue syndrome patients may be significantly higher. In addition, silent or latent infections in the general population may be, in this new data, as much as twice as high as originally reported in Science.
The U.S. agencies involved are the Food and Drug Administration and the National Institutes of Health. The paper is currently in press at a highly respected journal. There initially was some concern that senior staff at the Centers for Disease Control might try to suppress this paper by intimidating the editors at the journal. My source today scoffed at that notion and suggested the prestige of the journal is such that any effort to squelch the data would be quite difficult.
At least one of the investigators involved in this new study has had a long-standing interest in the etiology of chronic fatigue syndrome.
The scientists who collaborated on this new study did their work entirely independently of the authors of last October's groundbreaking Science paper.
Now comes this press release today from the Netherlands, titled, "FDA and NIH confirm 'XMRV' Findings."
Here is the link to the press release.
And here's the press release itself:
Original Press Release from the Netherlands: FDA and NIH confirm 'XMRV findings'
Gendringen, NL (MMD Newswire) June 22, 2010 -- The FDA and the NIH have independently confirmed the XMRV findings as published in Science, October last. This confirmation was issued by Dr. Harvey Alter of the NIH during a closed workshop on blood transfusion held on May 26-27 in Zagreb. Two journalists from the Dutch magazine for health professionals, ORTHO, who have been working on XMRV stories for several months, were able to obtain a copy of the Alter lecture.
In the October 8, 2009 issue of Science Express, the Lombardi-Mikovits group at the Whittemore Peterson Institute (WPI), the Cleveland Clinic and the National Cancer Institute (NCI) reported that 67% of 101 chronic fatigue syndrome (CFS) patients tested positive for infection with xenotropic murine retrovirus (XMRV). Only 3.7% of 218 healthy subjects tested were positive for this gammaretrovirus. Since that time, a number of research groups have proved unable to independently confirm these findings.
On Friday last, the AABB released an Association Bulletin recommending that its member blood collectors actively discourage potential donors who have been diagnosed with CFS from donating blood or blood components. This interim measure was proposed by the AABB Interorganizational Task Force on XMRV. This Task Force includes representatives from several government agencies, including the Center for Disease Control and Prevention (CDC), the Food and Drug Administration (FDA) and the National Institutes of Health (NIH).
The fact that the measure was introduced suggests the presence of information not yet published. The ORTHO journalists were able to obtain a pdf document of the lecture given by Harvey Alter at the IPFA/PEI 17th Workshop on 'Surveillance and screening of Blood Borne Pathogens' in Zagreb. The International Plasma Fractionation Association (IPFA) represents the not-for-profit organizations around the world involved in plasma fractionation. The IPFA is based in Amsterdam, the Netherlands.
The highly-experienced Dr. Harvey Alter is Clinical Studies Chief at the Infectious Diseases and Immunogenetics Section of the Department of Transfusion Medicine at the NIH Clinical Center in Bethesda. "The data in the Lombardi, et al Science manuscript are extremely strong and likely true, despite the controversy", was one comment on the XMRV findings reported by Alter in Zagreb. "Although blood transmission to humans has not been proved, it is probable. The association with CFS is very strong, but causality not proved. XMRV and related MLVs are in the donor supply with an early prevalence estimate of 3%‐7%. We (FDA & NIH) have independently confirmed the Lombardi group findings."
ORTHO contacted Dr. Harvey Alter today for a reaction. He did not want to comment, but confirmed that a paper is soon to be published.
ORTHO is a Dutch magazine for health professionals focusing on nutrition and dietary supplements. ORTHO has been publishing reports on CFS since 1988. Editor-in-chief: Gert E. Schuitemaker (PhD). Tel: + 31 (0) 315 695211 / + 49 (0) 170 808 9484. E-mail: ortho@orthoeurope.com.
ORTHO is a Dutch magazine for health professionals focusing on nutrition and dietary supplements. ORTHO has been publishing reports on CFS since 1988. Editor-in-chief: Gert E. Schuitemaker (PhD). Tel: + 31 (0) 315 695211 / + 49 (0) 170 808 9484. E-mail: ortho@orthoeurope.com.
I'm having some mixed reactions to this - though by far the most prominent is 'YESSS!!!'- so I'll chat about them a bit later when my brain settles down. Just had to pass this on as soon as I read about (thanks, Andrea!)
Monday, 21 June 2010
And I am sunburnt
I get a lot of 'cold days'. Days when I simply cannot warm up without hiding completely under a duvet (with my heatie-wheatie snuggly cat, obviously). It's a horrible cold, I feel like I'm cold right to the middle of me; the closest thing to it I have experienced pre-ME was when I had a narrow brush with hypothermia on a Silver DofE practice expedition. It takes no account of the real temperature around me - nor, in a fantastically annoying collaboration, does it mind being interrupted for a few minutes by the hot flushes of peri-menopause. Cold, cold, cold,hot, hot, hot, cold, cold, cold ARRRRGH. Make up your mind already!
Almost every day, I find myself with cold hands and feet, which I assume must be something to do with circulation. I recently started wearing fingerless gloves (note to self: blog later about wonderful fuzzy fingerless gloves with bows and trimmings) which has helped a surprising amount - having fewer issues typing and generally not dropping things. Trying hard to make this look like a fashion statement rather then emergency measures :)
So, yesterday being Midsummer Eve and Fathers' Day, my body took one look at the clear, shining blue sky and decided 'cold day'. Bastard. Cue me arriving at my in-laws muffled up in socks and soft boots, my bestest black elbow-length fingerless gloves, with a cardigan and a woolly wrap over my nice skirt and sweater. Bless them both, they are used to me and didn't even blink - not even when I went straight to sit in the sunniest spot in their garden, from which I didn't move until home time.
And that's how I came to be sunburnt. I'm not a sit in the sun person at all. Shade for me, every time. But I so wanted to be warm. The sun felt wonderful. After about an hour, the woolly wrap was history. After lunch, the cardigan went too. Bliss. I felt far too good, as well as too tired, to move - and the sun snuck in between the short sleeves of my sweater and gloves and did what it does to the stripe of bare skin there.
Peversely, I discovered myself feeling ridiculously cheered up by the realisation I had burned stripes on my arm and across my nose. I can only assume that I associate the sunburnt state - the glow, the tug of tightening skin, the 'ow ow ow, mmmm that's better' of aftersun lotion - with my formerly active days. I've never been a sunbather, so sunburn is something my mind links with a day's hiking, or gardening. Anyway, it may (ok, it does) look ridiculous, but it cheered me up for the whole evening.
In fact, it's making me smile right now.
Almost every day, I find myself with cold hands and feet, which I assume must be something to do with circulation. I recently started wearing fingerless gloves (note to self: blog later about wonderful fuzzy fingerless gloves with bows and trimmings) which has helped a surprising amount - having fewer issues typing and generally not dropping things. Trying hard to make this look like a fashion statement rather then emergency measures :)
So, yesterday being Midsummer Eve and Fathers' Day, my body took one look at the clear, shining blue sky and decided 'cold day'. Bastard. Cue me arriving at my in-laws muffled up in socks and soft boots, my bestest black elbow-length fingerless gloves, with a cardigan and a woolly wrap over my nice skirt and sweater. Bless them both, they are used to me and didn't even blink - not even when I went straight to sit in the sunniest spot in their garden, from which I didn't move until home time.
And that's how I came to be sunburnt. I'm not a sit in the sun person at all. Shade for me, every time. But I so wanted to be warm. The sun felt wonderful. After about an hour, the woolly wrap was history. After lunch, the cardigan went too. Bliss. I felt far too good, as well as too tired, to move - and the sun snuck in between the short sleeves of my sweater and gloves and did what it does to the stripe of bare skin there.
Peversely, I discovered myself feeling ridiculously cheered up by the realisation I had burned stripes on my arm and across my nose. I can only assume that I associate the sunburnt state - the glow, the tug of tightening skin, the 'ow ow ow, mmmm that's better' of aftersun lotion - with my formerly active days. I've never been a sunbather, so sunburn is something my mind links with a day's hiking, or gardening. Anyway, it may (ok, it does) look ridiculous, but it cheered me up for the whole evening.
In fact, it's making me smile right now.
Wednesday, 16 June 2010
Brain fog + Blogger is baaaaad
Ok, I thought I would see what the new templates were like. Now my blog is unrecognisable, and I can't get the old look back. Bah. Going back to bed before I break anything else.
Am kind of annoyed that this was only included in their 'try it, it's great!' blurb as a tiny footnote:
[1] Note: Selecting a new template will erase all of your customizations on the existing template, so if you have customized your template be sure to first save the current template at Design > Edit HTML.
Am kind of annoyed that this was only included in their 'try it, it's great!' blurb as a tiny footnote:
[1] Note: Selecting a new template will erase all of your customizations on the existing template, so if you have customized your template be sure to first save the current template at Design > Edit HTML.
It's not the having...
Sometimes I think Anth and I have between us have reached the stage where we manage my ME so well that it has become almost invisible to us. I go weeks without a crash or a Bad Flare Day. Then something happens to rub my face in how fragile the illusion we have achieved really is.
What happened this time is that Anth got sick. Like any normal beloved, I wanted to take care of him - bring cooling drinks, tempt him with food treats, make him comfortable. After managing this for a couple days, I overreached myself - stripped the bed, remade it with cool, clean bedding, put old bedding in wash. Cue falling over completely a few hours later. In his ill state, my 'patient' was thrown back into having to be 'carer husband'.
Yes, there are so many things I miss from before ME that I used to have or do for myself. But it's the things I can no longer do for the people I care about that I miss and resent the most.
Friday, 4 June 2010
Managing my ME - report
Just added Managing my ME to my list of links. In 2008, the ME Association set in motion a major survey of illness management requirements. Both patients and carers filled in questionnaires during the four-month information gathering period. Managing my ME has now been published giving us the results.
One result that I found heartening was that when asked 'who would you prefer to co-ordinate management of your illness?' the most frequent answer was 'my GP'. This is heartening because we often read of ME leading to a breakdown of trust between patients and GPs (indeed, it happened to me with my former GP) - most respondents still felt their GP should be provided with better training and information concerning ME, but it is good to hear that the basic relationship seems valued and relied upon. Equally, GPs are encouraged by the Wesseley lobby to view ME patients as malingerers - I am hopeful that the 'pro-GP' questionnaire answers indicate this hasn't been too successful.
If you can't guess who came bottom of the list people wanted to manage the illness, well, it begins with 'a psychia-' ;) I almost died of Not-Surprise.
Some of the results are no surprise at all - Graded Exercise Therapy (GET) tops the list of 'treatments that made me worse' by quite a long way with 56.5% saying GET had made them worse - this breaks down as 33.1% 'much worse', 23.4% 'slightly worse'. A mere 3.4% said they were 'greatly improved' after GET; 18.7% said they were 'improved' and 21.4% reported 'no change'.
Just imagine for a minute that GET were a drug - surely results like this would lead to it at the very least no longer being offered as the preferred treatment? We're talking about something that helps less than a quarter of the patients who undergo it, and makes more than half of those who undergo it sicker than when they started. (Perhaps someone who knows more about the medical world of trials could tell me how effective a drug treatment has to be shown to be before it is considered acceptable and worth pouring resources into?)
NICE are due to review their current guideline on CFS/ME (the one that says 'give 'em all CBT and GET') later this year - can we hope they will take any notice of this report?
Maybe we can at least hope to be faced with fewer outbreaks of total denial like the 'defeatism editorial' (BMJ2010;340:c738) in which Santhouse et al blithely asserted
Treatments such as cognitive behavioural therapy and graded exercise therapy have been shown to work in CFS/ME in adults and children (for whom the outcome is generally more optimistic) and they are recommended for both groups by the National Institute for Health and Clinical Excellence (NICE).
Oooh, was that the facts flying by right in front of their oblivious faces? How many times do these guys have to be faced with the evidence before they drop their mantra that we should all just perk up and do CBT and GET to reprogram our delusional brains?
As I have said in an earlier post, informed refusal (which is every patient's right by the way) is not 'defeatism'. It's self-preservation. You have to be coming from a pretty odd - and indeed, somewhat unpleasant - mental place if you label someone defeatist for refusing a treatment proved to do more harm than good.
For me, those who continue to push GET in the face of the evidence have definitely crossed that hazy line to the place where ignorance has become indistinguishable from malice.
When first diagnosed, I used to think that the frustrating thing about ME was that there was so little information and evidence 'out there'. If only. One of the hardest things to accept about this illness is that there is an abundance of information and evidence out there - but so many vested interests in imitating the 'hear no, see no, speak no' monkeys that the people who have it are constantly fighting - not to have their evidence acted on but to get it heard heard at all. We are still, in effect, trying to get to the starting line.
Here's hoping this won't be one more buried report.
Wednesday, 2 June 2010
Huzzah!
Let's go to a happy place for a moment and congratulate the Tymes Trust! (I'm raising a glass of healthy smoothie to them right now.)
The Young ME Sufferers Trust (Tymes Trust) has won the The Queen's Award for Voluntary Service, the 'MBE for volunteer groups'.
It's often, mistakenly, asserted that ME does not occur in children. In fact, it is the most common cause of prolonged school absence. Great to see Tymes Trust recognised for the work they do with children and young adults with ME.
The best way to describe what they they are up against and what they do is to let Shannen Dabson, their Young Advocate do it in her own words.
I hope one day we will live in a society where no teenager has to say, as Shannen does: "I’m used to pain. I’m used to rejection. I expect nothing from the professionals." If we get there, it will be thanks to the efforts of people like Tymes Trust. Good show, chaps!
What about ME? A project to watch
Below is a trailer for the documentary film 'What about ME?' which is aiming for release next year.
For anyone unfamiliar with the subject matter, Prof Hooper's comment on a young boy being snatched from his parents and almost drowned in an attempt to 'force him to stop faking it' refers to the shameful case of Ean Proctor, about which I wrote a little here.
ME Promo from Double D Productions on Vimeo.
Do share the trailer around. And you can read more about the project here.
Tuesday, 1 June 2010
IiME Conference Report - Andrea Pring
Reposted with permission. Andrea Pring, of Dancing With The Sandman, attended the Invest in ME Conference, and kindly gave permission to repost her report.
I struggle (a lot) with the science surrounding our illness, so I'm simply reposting without comments. Just want to draw one quote out from Andrea's report, for you to see before you get to the good stuff:
On a sadder note, not one member of the GMC or MRC attended and you may not be surprised to hear that the Chief Medical Officer turned down the invitation….yet again. One wonders how much longer these people will be able to bury their heads in the sand.
Unfortunately, the answer would seem to be 'as long as it remains profitable to do so' :(
Permission to Repost
REPORT ON THE INVEST IN ME CONFERENCE 2010
Venue: 1 Birdcage Walk, Westminster, London
Date: Monday 24th May, 2010
Chair: Professor Malcolm Hooper
Speakers: Professor Leonard Jason PhD; Professor Nora Chapman PhD; Dr. John Chia MD; Dr. Paul Cheney MD, PhD; Dr. Jonathon Kerr MD, PhD; Dr. Nancy Klimas MD, Professor Brigitte Huber PhD and Dr. Judy Mikovits PhD.
It was beautiful and unseasonably warm in Westminster for the 5th Invest in ME International ME/CFS Conference. We travelled by car from Devon leaving at 4am and managed to get there before the sun truly bared its teeth.
This was the first ME conference I have attended in the 5 years I have been ill. When I heard that Dr. Judy Mikovits would be speaking, I was determined that however ill I felt, I would still make the journey to see her presentation. The analogy of a pilgrim making his way to Mecca isn’t too far off for me.
The event was held in a beautiful Edwardian building on the site of the Institution of Mechanical Engineers in the historical Birdcage Walk, south of St. James’ Park. The street got its name from the Royal Menagerie and Aviary which were situated there in the reign of King James l. Famous visitors include Samuel Pepys and John Evelyn who both mention the Aviary in their personal diaries.
We arrived a little late and as the lecture had already begun we had to contend with sitting on the steps that ran alongside the seating area. This, as you can imagine, was not the best thing for me, having been couch-bound for months, but I managed to get through it, albeit with a lot of fidgeting and clock watching. Needless to say, my note-taking during this part of the conference was not the best. Hopefully you will still find something useful from my scribbles.
Every year, Invest in ME invites the most eminent research and medical scientists to speak at the conference. The room buzzed with only the sort of energy felt when the most esteemed are gathered together. The excitement was almost too much for me – I’m sure you can all attest to the effects of adrenaline, so it will be of no surprise (at least not to the ME sufferers) to hear that I broke out in a sweat and promptly started shaking. However, despite the adrenaline rushes and resulting weakness, I have to say that I was truly honoured to be in the same room as all these great minds.
On a sadder note, not one member of the GMC or MRC attended and you may not be surprised to hear that the Chief Medical Officer turned down the invitation….yet again. One wonders how much longer these people will be able to bury their heads in the sand. They are quickly becoming the laughing stock of the world.
The lecture hall was full to the brim with patients, patient advocates, physicians, international scientists, international doctors, news reporters and even the editor of the BMJ; which is a real turn-up for the books. I am eager to read what she has to say about the conference. I will not be in the least surprised if she mentions the negative XMRV study. I think we all know the leanings of the BMJ. Perhaps she will prove me wrong. One can only hope.
The Chair for the day was the remarkable Professor Malcolm Hooper, Emeritus Professor of Medicinal Chemistry, Sunderland, UK. Well known for his political writings and his staunch, 'British Bulldog' support of patients. In my eyes he is a true hero because he stands in the face of opposition and will not back down, regardless of the outcome.
Professor Hooper’s commentary added a touch of the comedic to the proceedings. Perhaps he doesn’t intend this, or it is just me who sees the funny side of him, nonetheless his humour lightens the load when difficult subjects are touched upon. That is not to say that he isn't serious about his work, for no one shows such dogged determination and complete understanding of the political landscape surrounding ME than he. I suppose you can tell that I am a big fan of his.
The rest of this report will detail each of the speakers together with the key scientific facts from their presentations.
First to speak was Professor Leonard Jason PhD Prof. of Clin. And Community Psychology at the Center of Community Research, DePaul University, Chicago, USA.
His talk was entitled HOW CASE DEFINITIONS CAN STIGMATIZE: IMPLICATIONS FOR EPIDEMIOLOGY, AETIOLOGY AND PATHOPHYSIOLOGY. From the title, I think it is clear where Professor Jason was headed. He presented his work with precision and great clarity. His presentation mirrored his own desire to find a clear definition for ME/CFS.
Professor Jason believes that the future of ME/CFS depends on reliable and valid ways of classification, particularly with regard research activity. This in turn will allow investigators to better understand etiology, pathophysiology, and treatment approaches for CFS.
“The poor understanding of the pathophysiology of ME/CFS may be due to case definitions lacking reliability and validity, and improving the case definition may prevent complications in identifying biological markers in this illness. “ (Journal of IiME, Volume 4, Issue 1)
Next up was Professor Nora Chapman PhD, Associate Professor Department of Pathology and Microbiology, University of Nebraska Medical Center
Title: PERSISTENT ENTEROVIRAL INFECTIONS
Professor Chapman’s presentation was highly academic and perhaps not quite suitable for the type of audience present. I have a science degree and struggled with the details, although the concept was clear. Chapman believes that enteroviruses are normally cleared by the immune response, however, work carried out on inflammatory heart disease has demonstrated the persistence of enteroviral RNA in hearts even after non-detection by cytopathic assays. Persistent infection by a group of enteroviruses, the coxsackie B viruses (CVBs), normally occurs in tissues with a low level of cell division. This tenacious infection is down to the continued but low level infection by defective CVBs.
In other words, Professor Chapman and her team have found the existence of defective enteroviruses in heart muscle that escape detection by normal assays and which aren’t cleared by normal immune response. “As enteroviruses infect a number of tissues, muscular or neurologic effects of this infection may be associated with some of the symptoms of ME/CFS but confirmation of this type of persistence requires sensitive assays.” (Prof. Chapman, Invest in ME, May 2010)
Professor Chapman was followed by Dr. John Chia MD, Infectious Disease Specialist practicing in Torrance, California, USA.
Title: ENTEROVIRUSES IN ME/CFS, DIAGNOSIS AND TREATMENT
“By analyzing samples of stomach tissue from 165 patients with CFS, Dr. Chia’s team discovered that 82% of these individuals had high levels of enteroviruses in their digestive systems. Dr. Chia’s research may result in the development of antiviral drugs to treat the debilitating symptoms of ME/CFS.” (Journal of IiME, Volume 4, Issue 1)
Dr. Chia spoke about the persistence of enteroviruses in ME/CFS. He spoke about the importance of getting a complete history when diagnosing the patient. Particular care should be given in finding out: what sort of travelling they had done, what kind of water they had been exposed to, past infections particularly of the respiratory and gastrointestinal kind, if they had suffered any flu-like episodes or taken steroids. He spoke of the need to look at surgery and vaccination history and exposure to molds, tick bites and sick people.
Dr. Chia spoke in great length about the use of a Chinese herb called Oxymatrine which he has developed into his own brand called Equilibrant. According to Dr. Chia, over half of his patients showed a positive response (56%: 75/134 people) to treatment. Which, all things being equal, can be considered a reasonably good success rate.
Dr. Chia’s presentation was full of colourful and informative slides and he broke the lecture up nicely by involving the audience with quick surveys. Although I found it interesting, particularly the treatment protocol, I am not convinced that enteroviruses are the cause of M.E. I personally believe they play a part in the condition but are not the root cause.
After a much needed break, we were joined by Dr. Paul Cheney MD, PhD,
Medical Director of the Cheney Clinic in Asheville, North Carolina, USA.
Title: DIASTOLIC DYSFUNCTION IN ME/CFS: A CARDIAC MANIFESTATION OF CELLULAR ENERGY DEFECTS IN ME/CFS
I was incredibly impressed with Dr. Cheney. It is apparent, from the way he presents, that he is an exacting, methodical researcher. As I have long believed I have a heart condition, the information he presented was perhaps the most interesting to me. It was a shame that he was not able to finish the presentation, due to the abominable time constraints. However, there is much information online regarding his research and I suggest that you take a look at what he has to say. I think you will be very surprised by what you read. For me, it makes perfect sense as it explains the pattern of my symptoms perfectly.
Dr. Cheney believes that we are suffering with oxygen toxicity and diastolic dysfunction, in other words Diastolic Cardiomyopathy, which is a relatively new condition. The problem is not that our ventricle functions poorly as is the case with Systolic Cardiomyopathy, but that it does not fill properly; it is a problem of cardiac output. Thus there is not enough blood to be pumped around the body, which leads to the symptoms of orthostatic intolerance amongst others. As this has only recently started showing up in the medical literature many doctors are unfamiliar with it. However, research is moving at a decent pace so it won’t be long before all cardiologists are able to diagnose and treat it.
According to Cheney, there are two types of diastolic dysfunction and the majority, if not all, of ME patients have Type I. Those who do go on to develop Type II have a 1 in 4 chance of surviving beyond 5 years of diagnosis.
So, how does this fit into the pattern of our symptoms? Well, Dr. Cheney explains that there are four distinct phases to our illness:
1) Onset
2) Triad (energy (push-crash dynamic), brain and pain)
3) Dynamic dysfunction
4) DNA phenotype adaptation
When we first fall ill our symptoms are often seen as much worse, yet our activity levels are normal. As the illness progresses we learn to cope with our symptoms and manage them to the detriment of functionality.
Dr. Cheney believes that many M.E. sufferers are so sick that they should be in a heart transplant ward. In a strange twist of circumstance, no one is more qualified to speak about this than Cheney, as he had a heart transplant himself.
Finally, Dr. Cheney tantalised us with the results from his XMRV work. He found that
38 of 47 (81%) consecutive patients in his practice were XMRV positive by amplified culture technique. He also noted that a higher incidence of positives were found within family groups, indicating that the virus is easily transmitted.
After lunch it was the turn of Dr. Jonathon Kerr MD, PhD, “Sir Joseph Hotung Senior Lecturer in Inflammation” at St. George’s University of London and Consultant in Microbiology in the Dept. of Cellular and Molecular Medicine.
Title: STUDY OF SINGLE NUCLEOTIDE POLYMORPHISMS (SNP) IN CHRONIC FATIGUE SYNDROME/MYALGIC ENCEPHALOMYELITIS (CFS/ME) AND CFS/ME SUBTYPES
After the wonderful lecture from Dr. Cheney, I was incredibly disappointed with Dr. Kerr’s presentation. Not only was he barely audible but his slides were appalling; ill-defined, faint, with the smallest of graphs and diagrams that it was quite impossible to read them. What a shame, as his work is immensely important. As, Nancy Klimas continually reminded us.
“We have recently reported gene expression changes in patients with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) and the utility of gene expression data to identify subtypes of CFS/ME with distinct clinical phenotypes (Kerr JR et al. J Infect Dis 2009;197:1171-84). Due to the difficulties in using a comparative gene expression method as an aid to CFS/ME disease and subtype-specific diagnosis, we attempted to achieve such a method based on single nucleotide polymorphisms (SNP) alleles.
To identify SNP allele associations with CFS/ME and CFS/ME subtypes, we tested genomic DNA of CFS/ME patients (n-108), endogenous depression patients (n=17_ and normal blood donors (n-68) for 454-504 human SNP alleles based within 88 CFS-associated human genes using the SNP Genotyping Golden Gate Assay (Illumina, San Diego, CA, USA). 359 Ancestry informative markers (AIM) were also examined.” (Journal of IiME, Volume 4, Issue 1)
Dr. Kerr believes we desperately need a means to differentiate subtypes. He says that SNPs (single nucleotide polymorphisms) alleles are just the ticket and will work as a clear biomarker. Dr. Kerr states that there are 21 SNPs significantly associated with CFS when compared to depression and normal controls.
His study “provides evidence that human SNPs located within CFS/ME associated genes are associated with particular gene expression subtypes of CFS/ME." (Journal of IiME, Volume 4, Issue 1) However more work needs to be carried out to develop it into a clinically useful aid to diagnosis.
Next up was the exuberant and addictively enthusiastic, Dr. Nancy Klimas MD
Professor of Medicine, Psychology, Microbiology and Immunology at the University of Miami School of Medicine, USA who states that we already have a biomarker! Tell that to all the government agencies in the world.
According to Klimas “The search for biomarkers in ME has become increasingly urgent, both in their potential role in diagnostics and in the design of clinical trials. Biomarkers can be used to define subgroups of patients appropriate for specific interventions such as immunologic abnormalities suitable immunomodulatory trials.” (Journal of IiME, Volume 4, Issue 1)
Dr. Klimas states that NK function is a good indicator of severity and is useful in defining population, but methodological issues limit its widespread use.
Dr. Klimas allowed us a glimpse into the findings from her newest paper which was published in PLoS One the day after the conference.
Professor Brigitte Huber PhD, Professor of Pathology at Tufts University, Boston, USA, followed Dr. Klimas and caused quite a stir.
Title: PRESENCE OF RETROVIRUS AS A BIOMARKER FOR ME/CFS
Professor Huber began by explaining her hypothesis on the retrovirus HERV-K18 (Human Endogenous Retrovirus). Huber believes that EBV-infection activates transcription of the env gene of HERV-K18. “This provirus is normally silent, but when induced it encodes a superantigen (Sag), which is a class of proteins that is capable of deregulating the immune system.” (Journal of IiME, Volume 4, Issue 1)
Preliminary studies found that HERV-K18 mRNA levels were higher in B cells from CFS patients in comparison to those of healthy controls.
Huber then moved on to discuss her latest work on XMRV. I looked at my husband and smiled; the recent findings in Germany still fresh in my mind. Show me the money. Now we can get take this XMRV baby to the bank. Professor Huber went through the study in a very autocratic and business-like manner, stating that the PCR she used was the best assay for the job, being highly sensitive. Then we were told that she used a psychologist to recruit patients. Wait. Stop right there! Now back up. Did she just say she used a psychologist to recruit CFS patients? I really began to sweat when she failed to specify selection criteria. I knew what was coming but it still hit me like a ton of bricks…ALL SAMPLES WERE NEGATIVE FOR XMRV INTEGRASE. You could cut the atmosphere with a knife. To add insult to injury she then said that any positives she found were down to contamination, implying, without actually saying, that the WPI were responsible. As she walked off the stage she muttered that she was sorry.
Dr. Judy Mikovits PhD, Research Director at the Whittemore Peterson Institute for Neuro-Immune Disorders, Reno, Nevada, USA, followed this nefarious attack with the most wonderful display of humility and strength that I have ever witnessed. I would have been shaking with anger but Dr. Mikovits remained calm and composed and promptly knocked Professor Huber right off her officious high horse. She explained clearly, for the millionth time, how the study was carried out and why PCR wasn’t enough on its own. She also explained why contamination was not and could not have been a factor, and in my opinion, should now be put to rest. At the end she thanked everyone for their birthday greetings. It was only at this point that her voice shook with emotion, as she revealed to the audience that it was the best thank you she could have been given.
Dr. Mikovits received a standing ovation. A spontaneous show of affection, so very un-British, but wholeheartedly deserved.
Andrea Pring, May 2010
REPORT ON THE INVEST IN ME CONFERENCE 2010
Venue: 1 Birdcage Walk, Westminster, London
Date: Monday 24th May, 2010
Chair: Professor Malcolm Hooper
Speakers: Professor Leonard Jason PhD; Professor Nora Chapman PhD; Dr. John Chia MD; Dr. Paul Cheney MD, PhD; Dr. Jonathon Kerr MD, PhD; Dr. Nancy Klimas MD, Professor Brigitte Huber PhD and Dr. Judy Mikovits PhD.
It was beautiful and unseasonably warm in Westminster for the 5th Invest in ME International ME/CFS Conference. We travelled by car from Devon leaving at 4am and managed to get there before the sun truly bared its teeth.
This was the first ME conference I have attended in the 5 years I have been ill. When I heard that Dr. Judy Mikovits would be speaking, I was determined that however ill I felt, I would still make the journey to see her presentation. The analogy of a pilgrim making his way to Mecca isn’t too far off for me.
The event was held in a beautiful Edwardian building on the site of the Institution of Mechanical Engineers in the historical Birdcage Walk, south of St. James’ Park. The street got its name from the Royal Menagerie and Aviary which were situated there in the reign of King James l. Famous visitors include Samuel Pepys and John Evelyn who both mention the Aviary in their personal diaries.
We arrived a little late and as the lecture had already begun we had to contend with sitting on the steps that ran alongside the seating area. This, as you can imagine, was not the best thing for me, having been couch-bound for months, but I managed to get through it, albeit with a lot of fidgeting and clock watching. Needless to say, my note-taking during this part of the conference was not the best. Hopefully you will still find something useful from my scribbles.
Every year, Invest in ME invites the most eminent research and medical scientists to speak at the conference. The room buzzed with only the sort of energy felt when the most esteemed are gathered together. The excitement was almost too much for me – I’m sure you can all attest to the effects of adrenaline, so it will be of no surprise (at least not to the ME sufferers) to hear that I broke out in a sweat and promptly started shaking. However, despite the adrenaline rushes and resulting weakness, I have to say that I was truly honoured to be in the same room as all these great minds.
On a sadder note, not one member of the GMC or MRC attended and you may not be surprised to hear that the Chief Medical Officer turned down the invitation….yet again. One wonders how much longer these people will be able to bury their heads in the sand. They are quickly becoming the laughing stock of the world.
The lecture hall was full to the brim with patients, patient advocates, physicians, international scientists, international doctors, news reporters and even the editor of the BMJ; which is a real turn-up for the books. I am eager to read what she has to say about the conference. I will not be in the least surprised if she mentions the negative XMRV study. I think we all know the leanings of the BMJ. Perhaps she will prove me wrong. One can only hope.
The Chair for the day was the remarkable Professor Malcolm Hooper, Emeritus Professor of Medicinal Chemistry, Sunderland, UK. Well known for his political writings and his staunch, 'British Bulldog' support of patients. In my eyes he is a true hero because he stands in the face of opposition and will not back down, regardless of the outcome.
Professor Hooper’s commentary added a touch of the comedic to the proceedings. Perhaps he doesn’t intend this, or it is just me who sees the funny side of him, nonetheless his humour lightens the load when difficult subjects are touched upon. That is not to say that he isn't serious about his work, for no one shows such dogged determination and complete understanding of the political landscape surrounding ME than he. I suppose you can tell that I am a big fan of his.
The rest of this report will detail each of the speakers together with the key scientific facts from their presentations.
First to speak was Professor Leonard Jason PhD Prof. of Clin. And Community Psychology at the Center of Community Research, DePaul University, Chicago, USA.
His talk was entitled HOW CASE DEFINITIONS CAN STIGMATIZE: IMPLICATIONS FOR EPIDEMIOLOGY, AETIOLOGY AND PATHOPHYSIOLOGY. From the title, I think it is clear where Professor Jason was headed. He presented his work with precision and great clarity. His presentation mirrored his own desire to find a clear definition for ME/CFS.
Professor Jason believes that the future of ME/CFS depends on reliable and valid ways of classification, particularly with regard research activity. This in turn will allow investigators to better understand etiology, pathophysiology, and treatment approaches for CFS.
“The poor understanding of the pathophysiology of ME/CFS may be due to case definitions lacking reliability and validity, and improving the case definition may prevent complications in identifying biological markers in this illness. “ (Journal of IiME, Volume 4, Issue 1)
Next up was Professor Nora Chapman PhD, Associate Professor Department of Pathology and Microbiology, University of Nebraska Medical Center
Title: PERSISTENT ENTEROVIRAL INFECTIONS
Professor Chapman’s presentation was highly academic and perhaps not quite suitable for the type of audience present. I have a science degree and struggled with the details, although the concept was clear. Chapman believes that enteroviruses are normally cleared by the immune response, however, work carried out on inflammatory heart disease has demonstrated the persistence of enteroviral RNA in hearts even after non-detection by cytopathic assays. Persistent infection by a group of enteroviruses, the coxsackie B viruses (CVBs), normally occurs in tissues with a low level of cell division. This tenacious infection is down to the continued but low level infection by defective CVBs.
In other words, Professor Chapman and her team have found the existence of defective enteroviruses in heart muscle that escape detection by normal assays and which aren’t cleared by normal immune response. “As enteroviruses infect a number of tissues, muscular or neurologic effects of this infection may be associated with some of the symptoms of ME/CFS but confirmation of this type of persistence requires sensitive assays.” (Prof. Chapman, Invest in ME, May 2010)
Professor Chapman was followed by Dr. John Chia MD, Infectious Disease Specialist practicing in Torrance, California, USA.
Title: ENTEROVIRUSES IN ME/CFS, DIAGNOSIS AND TREATMENT
“By analyzing samples of stomach tissue from 165 patients with CFS, Dr. Chia’s team discovered that 82% of these individuals had high levels of enteroviruses in their digestive systems. Dr. Chia’s research may result in the development of antiviral drugs to treat the debilitating symptoms of ME/CFS.” (Journal of IiME, Volume 4, Issue 1)
Dr. Chia spoke about the persistence of enteroviruses in ME/CFS. He spoke about the importance of getting a complete history when diagnosing the patient. Particular care should be given in finding out: what sort of travelling they had done, what kind of water they had been exposed to, past infections particularly of the respiratory and gastrointestinal kind, if they had suffered any flu-like episodes or taken steroids. He spoke of the need to look at surgery and vaccination history and exposure to molds, tick bites and sick people.
Dr. Chia spoke in great length about the use of a Chinese herb called Oxymatrine which he has developed into his own brand called Equilibrant. According to Dr. Chia, over half of his patients showed a positive response (56%: 75/134 people) to treatment. Which, all things being equal, can be considered a reasonably good success rate.
Dr. Chia’s presentation was full of colourful and informative slides and he broke the lecture up nicely by involving the audience with quick surveys. Although I found it interesting, particularly the treatment protocol, I am not convinced that enteroviruses are the cause of M.E. I personally believe they play a part in the condition but are not the root cause.
After a much needed break, we were joined by Dr. Paul Cheney MD, PhD,
Medical Director of the Cheney Clinic in Asheville, North Carolina, USA.
Title: DIASTOLIC DYSFUNCTION IN ME/CFS: A CARDIAC MANIFESTATION OF CELLULAR ENERGY DEFECTS IN ME/CFS
I was incredibly impressed with Dr. Cheney. It is apparent, from the way he presents, that he is an exacting, methodical researcher. As I have long believed I have a heart condition, the information he presented was perhaps the most interesting to me. It was a shame that he was not able to finish the presentation, due to the abominable time constraints. However, there is much information online regarding his research and I suggest that you take a look at what he has to say. I think you will be very surprised by what you read. For me, it makes perfect sense as it explains the pattern of my symptoms perfectly.
Dr. Cheney believes that we are suffering with oxygen toxicity and diastolic dysfunction, in other words Diastolic Cardiomyopathy, which is a relatively new condition. The problem is not that our ventricle functions poorly as is the case with Systolic Cardiomyopathy, but that it does not fill properly; it is a problem of cardiac output. Thus there is not enough blood to be pumped around the body, which leads to the symptoms of orthostatic intolerance amongst others. As this has only recently started showing up in the medical literature many doctors are unfamiliar with it. However, research is moving at a decent pace so it won’t be long before all cardiologists are able to diagnose and treat it.
According to Cheney, there are two types of diastolic dysfunction and the majority, if not all, of ME patients have Type I. Those who do go on to develop Type II have a 1 in 4 chance of surviving beyond 5 years of diagnosis.
So, how does this fit into the pattern of our symptoms? Well, Dr. Cheney explains that there are four distinct phases to our illness:
1) Onset
2) Triad (energy (push-crash dynamic), brain and pain)
3) Dynamic dysfunction
4) DNA phenotype adaptation
When we first fall ill our symptoms are often seen as much worse, yet our activity levels are normal. As the illness progresses we learn to cope with our symptoms and manage them to the detriment of functionality.
Dr. Cheney believes that many M.E. sufferers are so sick that they should be in a heart transplant ward. In a strange twist of circumstance, no one is more qualified to speak about this than Cheney, as he had a heart transplant himself.
Finally, Dr. Cheney tantalised us with the results from his XMRV work. He found that
38 of 47 (81%) consecutive patients in his practice were XMRV positive by amplified culture technique. He also noted that a higher incidence of positives were found within family groups, indicating that the virus is easily transmitted.
After lunch it was the turn of Dr. Jonathon Kerr MD, PhD, “Sir Joseph Hotung Senior Lecturer in Inflammation” at St. George’s University of London and Consultant in Microbiology in the Dept. of Cellular and Molecular Medicine.
Title: STUDY OF SINGLE NUCLEOTIDE POLYMORPHISMS (SNP) IN CHRONIC FATIGUE SYNDROME/MYALGIC ENCEPHALOMYELITIS (CFS/ME) AND CFS/ME SUBTYPES
After the wonderful lecture from Dr. Cheney, I was incredibly disappointed with Dr. Kerr’s presentation. Not only was he barely audible but his slides were appalling; ill-defined, faint, with the smallest of graphs and diagrams that it was quite impossible to read them. What a shame, as his work is immensely important. As, Nancy Klimas continually reminded us.
“We have recently reported gene expression changes in patients with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) and the utility of gene expression data to identify subtypes of CFS/ME with distinct clinical phenotypes (Kerr JR et al. J Infect Dis 2009;197:1171-84). Due to the difficulties in using a comparative gene expression method as an aid to CFS/ME disease and subtype-specific diagnosis, we attempted to achieve such a method based on single nucleotide polymorphisms (SNP) alleles.
To identify SNP allele associations with CFS/ME and CFS/ME subtypes, we tested genomic DNA of CFS/ME patients (n-108), endogenous depression patients (n=17_ and normal blood donors (n-68) for 454-504 human SNP alleles based within 88 CFS-associated human genes using the SNP Genotyping Golden Gate Assay (Illumina, San Diego, CA, USA). 359 Ancestry informative markers (AIM) were also examined.” (Journal of IiME, Volume 4, Issue 1)
Dr. Kerr believes we desperately need a means to differentiate subtypes. He says that SNPs (single nucleotide polymorphisms) alleles are just the ticket and will work as a clear biomarker. Dr. Kerr states that there are 21 SNPs significantly associated with CFS when compared to depression and normal controls.
His study “provides evidence that human SNPs located within CFS/ME associated genes are associated with particular gene expression subtypes of CFS/ME." (Journal of IiME, Volume 4, Issue 1) However more work needs to be carried out to develop it into a clinically useful aid to diagnosis.
Next up was the exuberant and addictively enthusiastic, Dr. Nancy Klimas MD
Professor of Medicine, Psychology, Microbiology and Immunology at the University of Miami School of Medicine, USA who states that we already have a biomarker! Tell that to all the government agencies in the world.
According to Klimas “The search for biomarkers in ME has become increasingly urgent, both in their potential role in diagnostics and in the design of clinical trials. Biomarkers can be used to define subgroups of patients appropriate for specific interventions such as immunologic abnormalities suitable immunomodulatory trials.” (Journal of IiME, Volume 4, Issue 1)
Dr. Klimas states that NK function is a good indicator of severity and is useful in defining population, but methodological issues limit its widespread use.
Dr. Klimas allowed us a glimpse into the findings from her newest paper which was published in PLoS One the day after the conference.
Professor Brigitte Huber PhD, Professor of Pathology at Tufts University, Boston, USA, followed Dr. Klimas and caused quite a stir.
Title: PRESENCE OF RETROVIRUS AS A BIOMARKER FOR ME/CFS
Professor Huber began by explaining her hypothesis on the retrovirus HERV-K18 (Human Endogenous Retrovirus). Huber believes that EBV-infection activates transcription of the env gene of HERV-K18. “This provirus is normally silent, but when induced it encodes a superantigen (Sag), which is a class of proteins that is capable of deregulating the immune system.” (Journal of IiME, Volume 4, Issue 1)
Preliminary studies found that HERV-K18 mRNA levels were higher in B cells from CFS patients in comparison to those of healthy controls.
Huber then moved on to discuss her latest work on XMRV. I looked at my husband and smiled; the recent findings in Germany still fresh in my mind. Show me the money. Now we can get take this XMRV baby to the bank. Professor Huber went through the study in a very autocratic and business-like manner, stating that the PCR she used was the best assay for the job, being highly sensitive. Then we were told that she used a psychologist to recruit patients. Wait. Stop right there! Now back up. Did she just say she used a psychologist to recruit CFS patients? I really began to sweat when she failed to specify selection criteria. I knew what was coming but it still hit me like a ton of bricks…ALL SAMPLES WERE NEGATIVE FOR XMRV INTEGRASE. You could cut the atmosphere with a knife. To add insult to injury she then said that any positives she found were down to contamination, implying, without actually saying, that the WPI were responsible. As she walked off the stage she muttered that she was sorry.
Dr. Judy Mikovits PhD, Research Director at the Whittemore Peterson Institute for Neuro-Immune Disorders, Reno, Nevada, USA, followed this nefarious attack with the most wonderful display of humility and strength that I have ever witnessed. I would have been shaking with anger but Dr. Mikovits remained calm and composed and promptly knocked Professor Huber right off her officious high horse. She explained clearly, for the millionth time, how the study was carried out and why PCR wasn’t enough on its own. She also explained why contamination was not and could not have been a factor, and in my opinion, should now be put to rest. At the end she thanked everyone for their birthday greetings. It was only at this point that her voice shook with emotion, as she revealed to the audience that it was the best thank you she could have been given.
Dr. Mikovits received a standing ovation. A spontaneous show of affection, so very un-British, but wholeheartedly deserved.
Andrea Pring, May 2010
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