M.E.charity calls on MRC to put its money where its mouth is, following new research from States
Action for M.E., the UK’s leading charity for people with M.E., is calling on the Medical Research Council to prioritise research into the link between viral infections and M.E., following the latest findings from the United States.
Scientists at the American Food and Drug Administration, National Institutes of Health and Harvard Medical School have found murine leukemia virus-related viruses (MLVs) in 32 out of a sample of 37 (86.5%) people with chronic fatigue syndrome, compared to 3 out of 44 (6.8%) healthy blood donors.
Chronic fatigue syndrome is also known as M.E. or M.E./CFS.
The findings, published in the Proceedings of the National Academy of Sciences (PNAS) support research from the Whittemore Peterson Institute in Reno, last October, which identified genetic material (DNA) from a mouse virus – murine leukaemia virus-related virus (XMRV) – in 68 out of 101 CFS patients (67%) compared to 8 out of 218 (3.7%) of healthy people.
Action for M.E.’s Chief Executive, Sir Peter Spencer, welcomed the latest news saying, “It is extremely encouraging to see positive results linking different strains of viruses and CFS, after disappointing results from other studies earlier this year.
“However, we cannot afford to leave this to the Americans. M.E. affects 250,000 men women and children in the UK, from toddlers aged two to people in their eighties. Many become so severely affected that they are bedbound or housebound.
“In June, the MRC’s expert group on M.E./CFS identified viral infection as a priority. We now call on the MRC to take this forward in real terms, as a matter of urgency, by allocating a significant level of funding to research in this area.
“There are still many questions to be answered, not least the variations in findings. Large-scale studies involving many more patients are also required.”
Chronic fatigue syndrome ‘may be caused by mouse-related virus’
Chronic fatigue syndrome may be caused by a rare mouse-related virus, new research suggests.
Scientists found evidence of murine leukaemia virus – known to cause cancer in mice – in 86 per cent of chronic fatigue patients.
However, traces from this family of bugs were only found in seven per cent of samples from healthy blood donors. It adds to the growing body of evidence that an infection could play a role in the complicated illness.
“Let’s be clear: This is another virus. They did not confirm [Mikovits’s] results,” says retrovirologist Myra McClure of ICL, a co-author of one of the four negative studies…”
“…The data do seem solid, admits Steve Monroe, who co-authored the conflicting CDC paper. “It’s simply a good paper,” adds Reinhard Kurth, the former director of the Robert Koch Institute in Germany, who helped test some of CDC’s samples and did not find the virus either. Alter—a widely respected virologist and winner of the Albert Lasker Award for Clinical Medical Research—”clearly knows what he is doing. They did everything correctly,” says Kurth, who nonetheless says he remains skeptical.
So too does virologist Robin Weiss of Imperial College London (ICL), who says he’s seen too many instances of proposed new human retroviruses that fell apart on closer inspection, including one he reported in arthritis and lupus patients in 1999 that turned out to be an innocuous rabbit virus. (In a 40-page review that he co-authored in 2008, Weiss called such mishaps “human rumor viruses.”) “You can have a very good reputation and be very careful and still get it wrong,” Weiss says.
Part of the problem, skeptics say, is that the researchers didn’t exactly replicate the Science paper. XMRV is a so-called xenotropic murine virus, which means it can no longer enter mouse cells but can infect cells of other species. (Murine means “from mice.”) The researchers in the PNAS paper say the viral sequences they find are more diverse than that and resemble more closely the so-called polytropic viruses, which is why they adopted the term MLV-related virus, for murine leukemia virus. “Let’s be clear: This is another virus. They did not confirm [Mikovits’s] results,” says retrovirologist Myra McClure of ICL, a co-author of one of the four negative studies…”
Virus link with chronic fatigue syndrome resurfaces
By Andy Coghlan
“The discovery of mouse virus fragments in cells from people with chronic fatigue syndrome has reinforced earlier claims that they may cause the condition.”
Health Blog
WSJ’s blog on health and the business of health.
By Amy Dockser Marcus
August 24, 2010, 1:55 PM ET.
PNAS Paper on Virus-Chronic Fatigue Syndrome Link Has Its Own Story
The much-awaited PNAS paper published yesterday (and reported in today’s WSJ) about the discovery of a family of retroviruses in patients with chronic fatigue syndrome came with a backstory — its own editorial explaining the publication process.
Here’s why that was necessary. Earlier in the summer, the WSJ reported that the completed paper, by a team of researchers from the NIH, FDA and Harvard Medical School, contradicted findings of a similar study done by CDC researchers and was being held until the discrepancy could be sussed out.
More Evidence Virus Plays Role in Chronic Fatigue Syndrome Condition afflicts a million Americans, but cause, treatments remain elusive
By Jenifer Goodwin HealthDay Reporter
I have received a response from Sir Peter Spencer, this afternoon.
Sir Peter writes that [Action for M.E.’s] position derives from their detailed reading of the MRC Ethics Guide for medical research involving children and from their understanding of the role of any ethics committee in satisfying itself that appropriate independent arrangements are in place to ensure patient safety.
That Action for M.E. has not seen the research protocol for this proposal and has no detailed knowledge of the way in which this trial would be conducted if approved.
That [Action for M.E.] does, of course, want to see research into LP in adults too – but as children are already seeing LP practitioners, before the process has been subject to research published in respected peer-reviewed journals, [they] can see a case for investigating if it is feasible within the Ethics Guide to set up a controlled trial.
I have written, today, to Action for M.E. requesting clarification of what information they have relied on when formulating their position on this controversial RNHRD NHS FT, Bath/University of Bristol Lightning Process pilot study.
Action for M.E. has now issued two position statements on this proposed Lightning Process pilot study for children.
Although funding for the study had been secured last November and a press release published in early March, by 17 June, the research team were still waiting on an ethics committee decision.
According to information posted on Action for M.E.’s Facebook site on 23 August, the project’s lead researcher, Dr Esther Crawley, has apparently confirmed that the pilot is still waiting to receive ethics approval.
University of Bristol Information Rights Officer and the Director of Legal Services had already confirmed to me (on 10 and 17 August) that the project lead had given assurances that “information requested will be published on the University’s website by the end of this month” and that “the published information will include the research protocol and related material, including information about the ethics approval process”.
It appears then that Dr Crawley is very confident her project will be approved.
The University FOI office has told me that I will be notified when the material is published.
A request for information and documents relating to the application for approval and the approval process timeline is due for fulfilment on or before 31 August. Information requested of the National Research Ethics Service can be read in this posting:
“Money for Min children’s study
Thursday, March 04, 2010, 15:29
“A project looking into a chronic childhood condition has been given a £164,000 boost.
[…]
“The team will be carrying out a three-day trial using the Phil Parker Lightning Process, which is designed to teach people a new set of techniques for improving life and health.
“The system is derived from osteopathy, neuro-linguistic programming and life coaching.
“Its creator, osteopath Phil Parker said: “We are thrilled to have the opportunity to collaborate on this exciting and groundbreaking research with Dr Crawley and her team.”
———
As you are aware, the University of Bristol’s FOI office is withholding virtually all information and documents under FOIA Clause 22(1)(a). Some limited documents relating to the funders have been made available.
When the University of Bristol issued its press release published on 2 March 2010 announcing the Lightning Process pilot study, the study had not, at that point, obtained ethics approval.
At 17 June, the University FOI Office confirmed that the study was still going through the ethics approval procedure and that information requested was expected to be published around August/September 2010.
I am recently advised by the FOI Office that Dr Crawley has assured them that information around the study and the research protocol is now planned to be published by the end of August. It is unconfirmed, but this suggests that the study may now have received approval.
So there is very little information in the public domain about the study design and methods.
The only information that is currently publicly available is:
2] The media article in “This is Bath” (URL above).
3] An article in the May issue of AYME’s Link Newsletter (a copy can be provided but no URL).
4] The information that Alastair Gibson is one of two LP practitioners involved with the NHS study (was on his website in March but has since been removed).
The “This is Bath” article states:
“The team will be carrying out a three-day trial using the Phil Parker Lightning Process, which is designed to teach people a new set of techniques for improving life and health.”
In five months, this has not been corrected by the lead researcher if this information is misleading.
The press release states that the primary outcome measure will be “school attendance after six-months”.
It seems unlikely, then, that the pilot participants and their families are going to be subjected solely to the application of “in-depth interviews”.
To date, there is virtually no information in the public domain about the proposed study design and methods and the research protocol is not expected to be published until the end of this month.
a) What is Action for M.E.’s understanding of what will be applied to the children during the life of the pilot study and by whom?
Where has it obtained the information on which it has based its decision to support this pilot study and to support any decision by the ethics committee(s) to grant a “favourable opinion”, ie, to approve the application?
b) Would Action for M.E. please set out what information it has relied upon in order to inform its position on this pilot and whether the organisation has made any approaches to the researchers or to any other body to obtain information about the proposed study over and above the press release, and what was the outcome of any approaches made?
More Evidence Virus Plays Role in Chronic Fatigue Syndrome Condition afflicts a million Americans, but cause, treatments remain elusive
By Jenifer Goodwin HealthDay Reporter
The Scientist
Q&A: Why I delayed XMRV paper, The Scientist – Magazine of the Life Sciences
The just-released study detects variants of the retrovirus XMRV in most CFS patients. In addition, nearly 7 percent of the healthy U.S. controls—all of whom are blood donors—test positive, signaling the contamination of the U.S. blood supply…
…the authors state that their conclusions “clearly support” the October 2009 Science paper linking a retrovirus to the neuroimmune disease Chronic Fatigue Syndrome (CFS), which afflicts 17 million people worldwide…
…Most surprising is that the PNAS study didn’t find XMRV, which stands for Xenotropic Murine Leukemia Virus-Related Virus, in any patients or controls. Instead, the researchers—from the National Institutes of Health (NIH), the FDA and Harvard Medical School—detected novel close cousins to XMRV called MLVs—which stands for Murine Leukemia Viruses—in 86.5 percent of 37 patients and nearly 7 percent of 44 controls.
Detection of MLV-related virus gene sequences in blood of patients with chronic fatigue syndrome and healthy blood donors
1. Shyh-Ching Lo a , 1 ,
2. Natalia Pripuzova a ,
3. Bingjie Li a ,
4. Anthony L. Komaroff b ,
5. Guo-Chiuan Hung a ,
6. Richard Wang c , and
7. Harvey J. Alter c , 1
+ Author Affiliations
1.
aTissue Microbiology Laboratory, Division of Cellular and Gene Therapies and Division of Human Tissues, Office of Cellular, Tissue and Gene Therapy, Center for Biologics Evaluation and Research, Food and Drug Administration, Bethesda, MD 20892;
2.
bDepartment of Medicine, Brigham and Women’s Hospital, Harvard Medical School, Boston, MA 02115; and
3.
cDepartment of Transfusion Medicine, The Warren Grant Magnuson Clinical Center, National Institutes of Health, Bethesda, MD 20892
1.
Contributed by Harvey J. Alter, May 25, 2010 (sent for review March 23, 2010)
Abstract
Chronic fatigue syndrome (CFS) is a serious systemic illness of unknown cause. A recent study identified DNA from a xenotropic murine leukemia virus-related virus (XMRV) in peripheral blood mononuclear cells (PBMCs) from 68 of 101 patients (67%) by nested PCR, as compared with 8 of 218 (3.7%) healthy controls. However, four subsequent reports failed to detect any murine leukemia virus (MLV)-related virus gene sequences in blood of CFS patients. We examined 41 PBMC-derived DNA samples from 37 patients meeting accepted diagnostic criteria for CFS and found MLV-like virus gag gene sequences in 32 of 37 (86.5%) compared with only 3 of 44 (6.8%) healthy volunteer blood donors. No evidence of mouse DNA contamination was detected in the PCR assay system or the clinical samples. Seven of 8 gag-positive patients tested again positive in a sample obtained nearly 15 y later. In contrast to the reported findings of near-genetic identity of all XMRVs, we identified a genetically diverse group of MLV-related viruses. The gag and env sequences from CFS patients were more closely related to those of polytropic mouse endogenous retroviruses than to those of XMRVs and were even less closely related to those of ecotropic MLVs. Further studies are needed to determine whether the same strong association with MLV-related viruses is found in other groups of patients with CFS, whether these viruses play a causative role in the development of CFS, and whether they represent a threat to the blood supply.
Author contributions: S.-C.L., N.P., and B.L. designed research; G.-C.H. designed mouse-specific mitochondria PCR assay; N.P. and B.L. performed research; B.L. and R.W. contributed new reagents/analytic tools; S.-C.L., N.P., G.-C.H., and R.W. analyzed data; and S.-C.L., N.P., A.L.K., and H.J.A. wrote the paper.
Study: Presence of Murine Leukemia Virus Related Gene Sequences Found in CFS Patients
Download image SILVER SPRING, Md., Aug. 23 /PRNewswire-USNewswire/ — Researchers have found murine leukemia viruses (MLV) related gene sequences in blood samples collected from patients diagnosed with chronic fatigue syndrome (CFS) and some healthy blood donors, according to a study published online today by the scientific journal Proceedings of the National Academy of Sciences (PNAS).
Investigators from the U.S. Food and Drug Administration’s Center for Biologics Evaluation and Research and the National Institutes of Health Clinical Center, in collaboration with a physician scientist at Harvard Medical School, examined blood samples from 37 patients diagnosed with CFS and from 44 healthy blood donors.
MLV is a type of retrovirus known to cause cancer in mice. Several different MLV gene sequences were identified in samples from 32 of the 37 patients with CFS (87 percent) and 3 of the 44 (7 percent) healthy blood donors. Investigators performed DNA sequencing on all positively amplified samples to confirm MLV like gene sequences.
This study supports a previous investigation [Lombardi et al. Science October 23, 2009 326: 585] that showed XMRV, a genetic variant of MLV-like viruses, to be present in the blood of people with CFS. The study demonstrates a strong association between a diagnosis of CFS and the presence of MLV-like virus gene sequences in the blood. The study also showed that MLV-like viral gene sequences were detected in a small fraction of healthy blood donors. Although the statistical association with CFS is strong, this study does NOT prove that these retroviruses are the cause of CFS. Further studies are necessary to determine if XMRV or other MLV-related viruses can cause CFS.
A previous study, published in 2009, reported finding XMRV infections in a high percentage of CFS patients and a small percentage of healthy blood donors. However, several other studies from the United States (including a recent report from the Centers for Disease Control and Prevention), the United Kingdom, and the Netherlands have found no evidence of XMRV or other MLV-like viruses in the blood of people with CFS.
News Advisory
Scientists to discuss research on XMRV in blood, chronic fatigue syndrome
What:
Telebriefing by experts from the Food and Drug Administration, the National Institutes of Health and the Centers for Disease Control and Prevention to respond to questions about this study. The paper is currently under embargo until Monday, August 23 at 3:00 p.m., by the Proceedings of the National Academy of Sciences.
Who:
Harvey Alter, M.D., Chief, Clinical Studies and Associate Director for Research, Department of Transfusion Medicine, NIH Clinical Center
Shyh-Ching Lo, M.D., Ph.D., Director, Tissue Safety Laboratory Program, Division of Cellular and Gene Therapies and Division of Human Tissues, Office of Cellular, Tissue and Gene Therapies, Food and Drug Administration Food and Drug Administration
Celia Witten, M.D., Ph.D., Director, Office of Cellular, Tissue and Gene Therapies, Food and Drug Administration
Hira Nakhasi, Ph.D., Director, Division of Emerging and Transfusion Transmitted Diseases, Office of Blood Research and Review, Food and Drug Administration
Steve Monroe, Ph.D., Director, Division of High-Consequence Pathogens and Pathology, Centers for Disease Control and Prevention
When:
Monday, August 23, 3:01 p.m. EDT
How: Reporters should call 1-888-677-4212 begin_of_the_skype_highlighting 1-888-677-4212 end_of_the_skype_highlighting and enter passcode 9258555. For those unable to participate, the briefing will be available on replay approximately two hours after briefing concludes. For replay, dial 1-866-373-4990 begin_of_the_skype_highlighting 1-866-373-4990 end_of_the_skype_highlighting and enter passcode 5711.
The NIH Clinical Center (CC) is the clinical research hospital for the National Institutes of Health. Through clinical research, physician-investigators translate laboratory discoveries into better treatments, therapies and interventions to improve the nation’s health. For more information, visit http://clinicalcenter.nih.gov .
The National Institutes of Health (NIH) ” The Nation’s Medical Research Agency” includes 27 Institutes and Centers and is a component of the U.S. Department of Health and Human Services. It is the primary federal agency for conducting and supporting basic, clinical and translational medical research, and it investigates the causes, treatments, and cures for both common and rare diseases. For more information about NIH and its programs, visit www.nih.gov .
XMRV: Whittemore Peterson Institute (WPI) Opens on campus of University of Nevada (Parts 1 and 2)
Sam Shad for Nevada Newsmakers
Part 1
Part 2
Update: This transcript was revised on 20 August and supersedes previous versions.
May be reposted if posted in full, unedited and a link to source is given.
Dorset CFS/ME Society
Annual Medical Lecture
27th March 2010
The Future of Research in CFS/ME
Esther Crawley
Intro:
It’s a great pleasure to be here, everybody, and I’m really glad actually that my talk actually fits in very nicely with what William’s just said – Phew!
I’m going to be talking a lot about the collaborative research and the first half of my talk actually was given to the MRC Working Group at the end of last year. So you’ll actually see what we were talking about where the MRC gathered lots and lots of researchers together to discuss a way forward with chronic fatigue [sic] and I did the talk on Epidemiology.
[…]
[Slide]
I couldn’t resist talking about XMRV. I think we have to know about what’s actually happened and I will discuss that as well and what the implications are.
[…]
[Rest of intro and presentation skipped.]
Approx 27 mins in from start of presentation:
[Slide]
XMRV. OK, so in the next, last, remaining bit of the talk I want to summarise what’s happened about the XMRV story for you. I think it’s really important that we’re all informed about it.
Many of you will have woken up and read this story, in fact I knew about it 24 hours before it was about to break – “Has science found the cause of chronic fatigue syndrome?” – we’re all very excited and hopeful this might give us something we can treat. Great.
[Slide]
Don’t you think this is the most beautiful picture? That’s the XMRV virus. I don’t know how they get those colours on them – very beautiful.
Now this is the Centre that reported it. Do any of you notice anything about that picture? XXXX you’re not allowed to say.
Sorry?
Member of the audience: Sunshiny?
EC: Sunshiny, yeah. It’s in Reno, yeah, yeah. Anything else? It’s a bit far away.
Has anyone looked at the website? Isn’t that interesting? That doesn’t exist. That’s a fake picture – it’s what they would like to exist, when you donate money, when you go on the website. I thought everybody knew that! Yeah, sorry? This is Dorset.
OK. The Centre isn’t built. That’s their picture of what they would like to build and when you go on the website it has “Please donate.”
OK. What do the Lombardi group originally show?
[Slide]
OK. This is a complicated slide. I’m just going to take you through bit by bit because it’s really important when we look at all the research evidence.
OK. The gag sequences – the DNA that’s associated with these particular type of viruses – so they use PCR. PCR is basically when you get a tiny bit of DNA and you multiply and multiply and multiply and then you run it on a gel and see if it’s there. And what they found, and you’ll all remember these figures, I’m sure, is that they found it in 68 out of 100 [Ed: 101 on slide] chronic fatigue [sic] patients and 8 out of 218 controls.
They then looked in the cells and they found the protein in the cells and then they looked at whether it’s infectious. Now I have to say, this bit made me slightly worried – so they looked to see whether this virus could infect other cells within the lab and they showed that it’s infectious and they also looked at what happened if you put the virus with other cells in terms of did it develop an immune response?
[Slide]
And these are some of the pictures they showed. So when you multiply out the DNA, you then run it on a gel and you tag it with a thing that shines – I did my PhD doing this, I can tell you all sorts of awful stories of gels breaking and all sorts of other things going wrong. But these are the chronic fatigue [sic] patients – you see all these lines, here? That’s that gag sequence – here and here – that’s the end of the line and these are the controls.
Then they looked at the expression in cells and you could see it. And then they looked at the infection and this is the infection happening here.
Now this paper went out for review by virologists – not by clinicians and that’s a very important point and it was passed and it was published.
[Slide]
And this is what they said on their website and I think this is kind of interesting: “
“We have detected the retroviral infection XMRV is greater than 95%…”
Where did the 95% come from? Did anybody notice the 95%? Can anybody remember the percentage they found it in? Yeah, 66% [sic], slightly less.
OK. Says on the website “…95%…The current [working] hypothesis is that [XMRV]…” infects these cells…and I found this absolutely terrifying…viral chronic fatigue syndrome “causes the chronic inflammation and immune deficiency resulting in an inability to mount an effective immune response to opportunistic infections”.
OK. Have they shown any of that? Have they shown increased risk of opportunist infections? Have they shown a defect in the immune system that’s actually going to affect someone rather than just in a cell lab plate?
[Slide]
No. But that’s what’s on their website. That’s what they say they’ve found. So what happens? The research community runs to replicate the work.
[Slide]
OK. And you’ll all remember when this first paper came out “Failure to replicate…” – this is an English paper [Ed: the McClure PLoS ONE paper]. Well obviously this is wrong because they didn’t use the same techniques and it wasn’t the same patient group.
[Slide]
So in this particular experiment, they actually characterised the patients.
Now on the original paper, they say that the chronic fatigue [sic] patients were well-characterised but they do not describe them at all. We don’t know how many were girls – we don’t know how many…girls! – I’m such a paediatrician – we don’t know how many were female. We don’t know how long they had had the illness for. We don’t know who diagnosed them and we don’t know whether they had any blood tests to exclude other illnesses.
In this one, [Ed: the McClure paper], they actually had all the exclusion stuff excluded, they then used the DNA sequence. They had positive and negative controls. Why do you need positive and negative controls? Yes, so you’re worried that maybe when you do PCR it’ll pick up…you’ve all seen crime scenes, right? So PCR will pick up one bit of DNA, so if you’ve got a bit of DNA in your solution or something like that, you must have negative controls because you need to be certain that the DNA has come from the samples – not from your lab solutions.
Yes. OK. And you must have positive controls to make sure your experiments work.
They used a virus free laboratory. So they did it in a laboratory that had not had the virus in the past and they blinded the person doing the PCR. Does everyone know about “blinding”? So what they did, was that the person that was reading the gels didn’t know whether they were patients or not, because it’s really easy on those gels to over-interpret what you see.
OK and their results, you might all remember, they didn’t find any out of 186 patients – none of them had chronic fatigue [Ed: corrects herself] – XMRV.
[Slide]
And then a few days later, this one came out. This one had several people from England – Jonathan Kerr and so on. And they’re very open – they said, John Gow – these are all people that we’re collaborating with – they said we wanted to find chronic fatigue syndrome – we wanted to find the XMRV virus. We wanted to – we looked hard.
Now the criticism of the previous paper was that they hadn’t used the same techniques, so in this one they used the same techniques. They had 170 patients, 395 controls. You can already see the sample size is much bigger and they did both PCR and looked at the serology.
They found none in 299 samples of patients – had chronic fatigue [Ed: corrects herself] – had XMRV. And although they found what’s called “neutralising activity” they looked at this further and suggested that the immune response was actually related to other viruses and not to the XMRV.
[Slide]
And then this was published a couple of weeks later [Ed: BMJ paper] – from the Dutch group. Again, a very well described Dutch cohort – smaller, 76 patients 69 controls. And what they did, they actually went completely overboard with trying to find it. They used very, very sensitive techniques that should have detected – if any was there at all, they should have detected it – much more sensitive than the original paper and they looked at a variety of DNA and they tried several times to improve the sensitivity – all samples were negative for XMRV.
So what do you think’s going on?
Member of the audience: Publicity.
EC: Publicity…
….I have actually given a clue.
Member of the audience: Money?
EC: Sorry. Money…money…money…
Member of the audience: XXXX wants to tell us.
EC: OK, go on, XXXX…
EC’s young son (in front row): Did they all do it from one place?
[Slide]
EC: Ye…es! The first group – actually, the question is, was the first group chronic fatigue syndrome? And eventually, when they were asked, they told the research community that, this is in Lisbon, at the end of last year, that all the samples came from an outbreak of chronic fatigue syndrome in one village in Lake Tahoe.
And when you actually go and have a look at all the research data around that outbreak, everybody at that time thought it was a viral infection. And nobody could find the virus.
So most of us think that that was probably the issue – it was probably a viral outbreak that has certainly caused chronic fatigue syndrome but is not necessarily going to be relevant for us here in the UK.
[Slide]
It’s not clear about the PCR operator, the person that looks – it’s not clear from the paper, whether they were blinded. There might be issues about whether you work in a virus free lab, remember they showed that this was infectious.
And there’s a big question here [Ed: indicates on slide] – this XMRV virus was initially described with prostate cancer and the prostate research community has shown this in prostate cancer in two studies in the USA. These are different labs in different studies but no association in Europe.
So maybe this is a virus that’s important in America but not important in this country – it’s not clear.
And I think this is of interest. Within a week of their paper being published they produced a test for the XMRV virus at $650 a test. [Ed: Slide reads, at point 4: Conflict of interest?].
And if I was developing a test, I would declare that as a conflict of interest on the paper – “I’m developing a test for this.” Then people can make up their mind about whether it has affected the results. We don’t know, it wasn’t declared they’d produced a test.
[Slide]
Why are patients so upset?
OK, well I don’t know and you’ll probably be able to tell me more than I can tell. But I think when they first publicised this they went on everything, lots and lots of American television.
[Slide]
[Reads from slide]
“Vindication” they said, “This “[new] report has intrigued scientists, been seen as vindication by some parents [Ed: corrects herself] – patients and inspired hope for treatment.”
Well you know, the history of this condition is that patients have not been listened to, they’ve been dismissed, they’ve had a terrible time and if a virus comes along as a cause, that is going to be seen as a vindication – I can understand that.
And it’s very disappointing, isn’t it, the negative replications?
[Slide]
But I do think that there’s been other stuff that’s been going on that I have particular difficulties with. When I prepared this talk for an infectious diseases conference, I went through and I just got some quotes off the web from the research team.
[Slide]
Look at this:
[Reads from slide]
“Here you’ve got your immune system working well and the virus and the immune system are coexisting just fine and then some other bug, whether it be Lyme, a flu, anything gets you…and then you’ve just tipped the scale to where your immune system can’t handle [XMRV] or anything, and every day you’re seeing new infections.”
[Slide]
And then at one point, rumour has it (and I couldn’t find any evidence for this) that they started to suggest that patients with chronic fatigue syndrome should have anti-retrovirals, ie HIV drugs.
They’ve taken that back, and this is all I could find:
[Slide]
[Reads from slide quoting Dr Judy Mikovits; the “she says” refers to Dr Mikovits]:
“While it’s not advisable to take highly toxic anti-retrovirals [without tests confirming effectiveness], she says some available therapies may help, including: immune modulators; anti-inflammatories, because inflammation activates XMRV, things that improve natural killer cell function; medications that help [level progesterone levels, because progesterone up-regulates XMRV in lab tests]; avoiding stress.”
It appears – and this really upset me, OK. All of their studies are in adults. OK, all in adults. And then they say:
[Reads from slide]
“Early infection in children can lead to more severe disease later on.”
Early detection?
Oh, that’ll be that test that they produced for $605 [sic] a pop.
[Reads from slide]
“and intervention important to keep viral loads from getting high.”
I find that really frightening. If I had a child with chronic fatigue syndrome and I read that on the web, the first thing I’d do, I’d go and buy the test, and the second thing I’d be doing would be phoning an infectious disease doctor which is what’s happened and ask about anti-retrovirals for my child, having read that.
So I do feel as researchers, we do take some responsibility for saying “This is a first paper! Let’s wait and see what happens.”
You know, I think it’s really interesting, it look likes they did find something in a group of patients and we haven’t found it here. That’s really interesting and is deserving of more research. But let’s just say, it’s interesting at the moment, rather than all of this speculation, which I think can be very harmful for patients.
[Slide]
The future for infection
OK, I gather that this may well already have happened, not been published, the way forward in these things is to replicate the studies in both labs and try and look at why there are differences.
I think it may be important for a subtype of chronic fatigue syndrome.
I very much doubt it effects all of them, as they claim.
It doesn’t appear to be important in this country.
And there’s actually very beautiful research which we need to understand more, looking at the relationship between genetics, infection and other things like mood.
OK. After a whistle-stop tour of most research on chronic fatigue syndrome, this is now my summary slide – this is what I’ve talked about.
[Slide]
There are two arms for research in chronic fatigue syndrome and I don’t believe that one replaces the other. The funding for both arms is different in this country and they both need to be done together and both influence the other.
[Slide]
The first is important for providing services and treatment:
We need to know more about how common this is.
We need to understand who it affects.
And we need to know about the different types of chronic fatigue syndrome.
We need to understand how the different types influence treatment.
We need to know much, much more about the impact of this devastating condition on patients and carers.
The second one is that we need to know more about the aetiology, about the causes of this condition and in my view, the fastest way forward is to use the large, very large sample sizes that we have available in this country to conduct rigorous genome-wide association studies and I’m not so certain about the role of infection but I do think there is an interesting story with XMRV that we need to get to the bottom of.
And it just remains for me to thank my funders – I’m funded by the National Institute of Health Research and my Clinician Scientists Fellowship, the Linbury Trust, Action for M.E. and I’m the Medical Adviser for AYME.
[Slide]
And this is where I work.
Thank you very much.
——-
There was a Q and A session which included questions about the RNHRD NHS FT/University of Bristol Lightning Process pilot.
“It has taken Rebecca huge determination and commitment to get to this stage,” said Mrs MacDonald, who hopes new research being led by Dr Esther Crawley, consultant paediatrician at the Royal National Hospital for Rheumatic Diseases NHS Foundation Trust, will go some way to getting the training accepted by the NHS.*
“It really can benefit lots of people who feel there is no hope – we’re proof that you can overcome ME and CFS. Hopefully research will provide us with a better understanding of how it works and enable the NHS to support it,” said Mrs MacDonald.
*For background to this controversial pilot study see ME agenda 5 July report:
A FORMER Truro teacher who made a “miraculous recovery” from being wheelchair-bound by ME has helped transform the life of a Redruth schoolgirl by ‘training’ her to overcome the same condition.
English teacher Julia MacDonald, who spent nine years in a wheelchair being spoon fed puréed food by her husband, made a remarkable recovery after taking part in a training programme that draws on the techniques of life coaching and osteopathy.
So inspired by the Lightning Process training, Mrs Macdonald now runs her own three-day courses.
Life-changing
“I became reliant on my husband for everything, then the training changed my life,” said Mrs MacDonald.
Rebecca Burns, 16, of Redruth, who recently completed the training, which is currently not recognised by the NHS, believes her own “amazing” recovery is down to the same technique.
“I was 11 when I had a bad bout of flu – I never really got over it and my symptoms got worse over time,” said Rebecca, who spent the next five years going back and forth to various clinics and hospitals hoping to find a diagnosis for her mystery illness.
“I was suffering pains in my stomach and legs, nausea, and memory loss,” said Rebecca, who was pulled out of school by the time she was 15 because her condition had become so severe.
“I was in a wheelchair and virtually housebound because I was so nervous of meeting people and going outside.
“My parents were very anxious as no one was able to identify what was wrong, then they diagnosed ME and chronic fatigue syndrome (CFS). It was a relief at first, until they said there was nothing they could do to help me.”
Desperate to find a cure or treatment for their daughter, Rebecca’s parents signed her up for the training, although sceptical of its benefits at first.
“I’m not sure they were totally convinced it would work and they didn’t want to build my hopes up,” said Rebecca who went on to make a full recovery.
“On the first day I remember feeling excited and saying to myself this will work.
“I went home and walked the dog for the first time in a year. And then on the second day I woke up and saw colour in my face. Instead of being gaunt and tired, I knew then that I had turned a corner.”
“It has taken Rebecca huge determination and commitment to get to this stage,” said Mrs MacDonald, who hopes new research being led by Dr Esther Crawley, consultant paediatrician at the Royal National Hospital for Rheumatic Diseases NHS Foundation Trust, will go some way to getting the training accepted by the NHS.
“It really can benefit lots of people who feel there is no hope – we’re proof that you can overcome ME and CFS. Hopefully research will provide us with a better understanding of how it works and enable the NHS to support it,” said Mrs MacDonald.
Rebecca now hopes to complete her education by embarking on a course at Truro College, something that she never thought would be possible.
Will this new trialled process really aid the ME sufferer?
Dr Esther Crawley will, no doubt, receive questions about her proposed research using the Lightning Process in children diagnosed with CFS/ME (‘Money for Min children’s study, Bath Chronicle, March 4) relating to the validity and reliability of her experimental design, her subject selection, the statistical analysis, as well as any additional particular ethical considerations of working with children.
But I have some more fundamental concerns even before these are raised.
The reality is that there is no reason to believe – whether it has any ameliorative effect on any organic illness at all – that the Lightning Process will cure, or aid recovery in, people with ME and there is a possibility that it could even have a negative influence or be harmful.
Despite attempts to give the Lightning Process some scientific respectability by claiming some theoretical chemical or neurological processes and claiming support from academic researchers, there is none that can be relied upon.
There are at least three serious problems underlying any claims for its use with ME sufferers:
(1) only hearing one side of the story;
(2) distorted statistics and;
(3) the relatives of the celebrity endorsers may not have had ME at all.
We only ever hear positive testimonials because any negative ones have been selectively edited out of the Lightning Process website, where only favourable testimonials and press coverage seem to appear.
The extravagant 85 per cent success claim is distorted, primarily because most people with ME would not be able to make it to the place where the Lightning Process is given, or have the stamina to do three days together, so are not even in the reckoning.
It is difficult to check the claims of the celebrity endorsers of the Lightning Process without possibly compromising the patient confidentiality of their relatives, for whom they claim such great success.
The most severely affected people with ME (not the CFS/ME mongrel) will not have even been considered; the Lightning Process will be promoted, in addition to as endorsed by celebrities, as a mainstream treatment worthy of study by reputable academics and yet there will have been no significant return to school, work or resumption of a normal lifestyle.
It is not true to say that if the Lightning Process does no good it will not do any harm.
For people who have had ME for many years and who have tried everything on offer that hasn’t worked, this may be yet another disappointment or even the last straw.
I hope that Dr Crawley will prove my predictions wrong.
I beg her to, at the very least, postpone her proposed research until she has addressed these serious underlying issues.
DR JOHN H GREENSMITH ME Free For All. org Downend Bristol
The “Lightning Process” is controversial, unregulated and untrialled.
According to information obtained under the Freedom of Information Act, this proposed RNHRD NHS Foundation Trust Bath/University of Bristol pilot study led by Dr Esther Crawley has yet to obtain research ethics approval.
The pilot study seeks to involve children as young as eight. Children are considered a vulnerable research group and the Medical Research Council (MRC) and other institutions, like the Royal College of Paediatrics and Child Health (RCPCH) and the General Medical Council (GMC), publish specific ethical guidelines for research using children and young people. MRC guidelines are clear:
“Research involving children should only be carried out if it cannot feasibly be carried out on adults…
“…Have previous laboratory studies, animal research, studies with adults, or other data provided a sufficient basis for proceeding with research involving children?”
To date, no rigorous randomised controlled trials (RCTs) have been carried out in adults and there is no reliable data on the safety of the application of the Lightning Process in adult patients with CFS and ME.
On 4 August, two of Britain¿s leading ME and CFS charities, The ME Association and the Young ME Sufferers Trust, issued a joint statement and press release condemning this proposed pilot study as unethical and calling for it to be abandoned.
The two charities say:
“We are issuing this joint statement due to widespread public concern, together with our own serious reservations, about a forthcoming study of the psychologically-based Lightning Process on children.”
“We cannot approve of a study involving children as young as eight when no rigorous trials have first been undertaken into the safety, acceptability, long and short-term effects of the application of this controversial and unregulated ‘process’ with adults.”
It is feasible to carry out research into the application of the Lightning Process using adults with CFS and ME but the research team has provided no rationale for seeking ethics approval to undertake research using a vulnerable patient group first.
With no access to robust data, the research team and the Research Ethics Committee(s) considering the application for ethics approval are not in a position to determine that overall the likely benefits of the research outweigh any risks to child participants diagnosed with CFS or ME.
Furthermore, parents, and children considered competent to give consent, are not in a position to give informed consent because there is no data from adult RCTs.
It is also a matter of public interest that the Dr Crawley’s research team has sought to obtain the advice, guidance and involvement of a Lightning Process practitioner who, in June, was subject to an Advertising Standards Authority (ASA) ruling in relation to claims being made in an advertisement about the efficacy of the Lightning Process for CFS and ME.
The Advertising Standards Authority¿s remit does not extend to website content but there is public concern that there are websites for practitioners offering the Lightning Process to adults and children where unsubstantiated claims are being made that clients have “recovered from, or experienced significant improvement” from diseases and conditions which, in addition to ME and Chronic Fatigue Syndrome, are claimed to include “…urinary infections, coeliac disease, crohns disease, blood pressure, cardiac arrhythmia, type 2 diabetes, hyper/hypo thyroidism, autistic spectrum disorder, dyspraxia, ADHD, lymes disease, glandular fever, epstein barr virus, multiple sclerosis, cerebral palsy, parkinsonian tremor and motor neurone disease.”
Suzy Chapman, Dorset, UK
commented on 09-Aug-2010 19:46
The following response was submitted to eBMJ Rapid Responses on 15 July, and is currently unpublished. A copy also appears on the ONE CLICK website.
Re: Failure to appreciate pain is a symptom not a diagnosis is what leads to bad medicine
Suzy Chapman,
Carer
Dorset
15 July 2010
Send response to journal: Re: Re: Failure to appreciate pain is a symptom not a diagnosis is what leads to bad medicine
In his response “Failure to appreciate pain is a symptom not a diagnosis is what leads to bad medicine”, Dr Munglani, Consultant in Pain Medicine, West Suffolk Hospital, recommends the Lightning Process [1].
The Lightning Process is a three-day course said to be based on neuro-linguistic programming (NLP) and life coaching. It is marketed not as a therapy or a treatment but as a “training program”. It is unregulated and its practitioners are trained and “licensed” by the Phil Parker organisation. Many of those who train to become Lightning Process instructors are former “trainees”, themselves.
I note that Dr Munglani has a provided a number of personal testimonials for the pages of the website of a Suffolk Lightning Process centre [2].
The website states that there are now NHS and private consultants, GPs and occupational therapists referring patients to the centre, and that NHS clinicians have attended as observers of the work carried out there. Visitors to the site are encouraged to contact an OT at the James Paget University Hospital pain clinic or OTs at the Norfolk and Suffolk ME/CFS service, for which contact details are given.
On one of its web pages is the following:
“What does the Lightning Process work for?
“People using the Lightning Process™ have recovered from, or experienced significant improvement with the following issues and conditions
“ME, chronic fatigue syndrome, PVFS, adrenal fatigue, acute and chronic pain, back pain, fibromyalgia, rheumatoid arthritis, migraine, injury, PMT, perimenopausal symptoms and menopause, clinical depression, bipolar disorder, anxiety and panic attacks, OCD and PTSD, low self- esteem, confidence issues, hay fever, asthma and allergies, candida, interstitial cystitis, urinary infections, bladder and bowel problems, IBS, coeliac disease, crohns disease, food intolerances and allergies, blood pressure, cardiac arrhythmia, type 2 diabetes, restless leg syndrome, hyper/hypo thyroidism, insomnia and sleep disorders, autistic spectrum disorder, dyspraxia, ADHD, lymes disease, glandular fever, epstein barr virus, weight and food issues, anorexia and eating disorders, multiple sclerosis, cerebral palsy, parkinsonian tremor, motor neurone disease”
On 16 June, the Advertising Standards Authority (ASA) published an adjudication against a Bournemouth company following its upholding of a complaint about a Lightning Process advertisement [3].
The ASA records their concerns that “the company did not hold robust evidence to support their claims that the lightning process was an effective treatment for CFS or ME. We therefore reminded them of their obligations under the CAP Code to hold appropriate evidence to substantiate claims prior to publication. Because we had not seen any evidence to demonstrate the efficacy of the lightning process for treating the advertised conditions, we concluded that the claims had not been proven and were therefore misleading.”
The company was advised to ensure “they held substantiation before making similar efficacy claims for the lightning process”.
The Advertising Standards Authority’s remit does not extend to website content. But I hope that Dr Munglani, who provides personal testimonials for the Suffolk centre, has satisfied himself that this centre is able to provide robust evidence to substantiate its claims that people using the Lightning Process, said to be based on neuro-linguistic programming (NLP) and life coaching, have “recovered from, or experienced significant improvement” from diseases and conditions which, in addition to ME and chronic fatigue syndrome, include urinary infections, coeliac disease, crohns disease, blood pressure, cardiac arrhythmia, type 2 diabetes, hyper/hypo thyroidism, autistic spectrum disorder, dyspraxia, ADHD, lymes disease, glandular fever, epstein barr virus, multiple sclerosis, cerebral palsy, parkinsonian tremor and motor neurone disease.
This is a very topical issue because in March, the Royal National Hospital for Rheumatic Diseases NHS Foundation Trust, also known as the Min, and the University of Bristol announced a pilot study looking into interventions and treatment options for Chronic Fatigue Syndrome [4].
Funding of £164,000 from the Linbury Trust and the Ashden Trust has been awarded to a research team led by Dr Esther Crawley, Consultant Paediatrician, Royal National Hospital for Rheumatic Diseases, Bath, CFS Clinical Lead for Bath NHS FT and a Senior Lecturer, University of Bristol.
The pilot study, scheduled to start in September, will look at the feasibility of recruiting children aged 8 to 18 with CFS and ME into a randomised controlled trial (RCT) comparing the Lightning Process and specialist medical care. The study has the involvement of Phil Parker and colleagues.
“The study will involve in depth interviews with the patients and their parents, and the primary outcome measure will be school attendance after six-months. It is hoped that over 90 children aged between eight and 18 and their families will be involved in the study. They will be recruited after assessment by the specialist team at the Min.”
The Medical Research Council (MRC) produces specific guidelines for research involving vulnerable patient groups. The document “MRC Medical Research Involving Children” is clear:
“4.1 Does the research need to be carried out with children? Research involving children should only be carried out if it cannot feasibly be carried out on adults.” [5]
No rigorous RCTs into the application of the Lightning Process in adults with CFS and ME have been undertaken.
Data from two large patient surveys carried out by Action for M.E./AYME (published 2008) and by the ME Association (published May 2010) show similar levels of worsening of symptoms in CFS and ME patients following the three day “training program”, or of no improvement at all (AfME/AYME: Worse: 16%, No change: 31%; MEA: Slightly worse 7.9%; Much worse 12.9%; No change 34.7%) [6].
With no robust data from the application of Lightning Process in adults, how can the research team determine that overall the likely benefits of the research outweigh any risks to child participants and that undergoing the training program would not be detrimental to a child’s current health status and psychological well-being, as a patient diagnosed with CFS or ME?
There are considerable concerns that an NHS paediatric CFS unit should be planning a study involving children as young as eight when no rigorous trials have first been undertaken into the safety, acceptability, long and short-term effects of the application of this controversial and unregulated “process”.
Not only is it feasible to carry out research into the application of the Lightning Process using adults with ME and CFS, many feel it unethical not to do so first.
Poll: Do you think it is ethical to undertake a pilot study looking at the feasibility of recruiting children aged 8 to 18 with CFS and ME into a randomised controlled trial (RCT) comparing Lightning Process and specialist medical care when no rigorous RCTs into the application of LP in adults have been undertaken?
Home for good? Black Mountain couple regains custody of son
by Nelda Holder in Vol. 16 / Iss. 31 on 02/24/2010
Statement from P.A.N.D.O.R.A., Inc.
FOR IMMEDIATE RELEASE
26 February 2010
By Marly Silverman, Founder & President
The case of Ryan Baldwin is an ominous wake-up call of the need for awareness of Pediatric Chronic Fatigue Syndrome
Nelda Holder’s article on young Ryan Baldwin and his family (“Home for good? Black Mountain couple regains custody of son” Mountain Express 2/24/2010) shines a long-anticipated and much needed spotlight on more research, proper diagnosis and treatment options for children and young adults under the age of 18 stricken with Chronic Fatigue Syndrome (CFS).
The sad case of Ryan Baldwin and his family underscores the dangerous lack of understanding as to the serious nature and special care of children with Chronic Fatigue Syndrome, as well as current objective medical research on the illness.
Clearly, as was the case of the Baldwins, government officials need better understanding and awareness of the complexities of this illness that strikes 1 to 4 million Americans including children, teenagers, young adults, adults, and the elderly, according to the Center for Disease Control and Prevention (CDC).”
CFS community advocates for Ryan
In 2009, Pat Fero, director of the Wisconsin CFS-ME association and Jerry Rice, the Baldwin family’s local advocate in their home in Buncombe County, North Carolina brought Ryan’s situation to our attention. County officials had removed Ryan from his family, alleging that his parents have not provided him with “mental health care and access to a pediatrician.”
Along with 23 other patient advocacy non-profit organizations, P.A.N.D.O.R.A. mobilized an awareness campaign that included letters and petitions to North Carolina Governor Bev Perdue, NC State Legislators and NC Federal legislators on behalf of then 16-year-old CFS patient Ryan and his family.
We were elated when Ryan was finally reunited with his family. We were even more excited when Lisa Baldwin, Ryan’s mother, joined P.A.N.D.O.R.A. early this year to help with creating awareness of the issues that surround families with children with Chronic Fatigue Syndrome so that no other family will have to go through “the hell” that the Baldwin family did.”
To further address the need for better understanding and awareness of CFS in adolescents, P.A.N.D.O.R.A., a nationally recognized patient advocacy group which stands for Patient Alliance for Neuroendocrineimmune Disorders Organization for Research & Advocacy, Inc., is creating its first patient and physician CME committee to help plan a conference explicitly dealing with pediatric Chronic Fatigue Syndrome.
The Pediatric Chronic Fatigue Conference aims to provide the medical community and government authorities with the proper training and resources to launch important educational initiatives that will ensure that children with CFS and other chronic pain illnesses and their families will be treated with the respect and care that they deserve.
For additional information about the P.A.N.D.O.R.A. Pediatric Chronic Fatigue Syndrome conference committee, contact Marly Silverman at: contact@pandoranet.info .
About P.A.N.D.O.R.A., Inc- Patient Alliance for Neuroendocrineimmune Disorders Organization for Research & Advocacy P.A.N.D.O.R.A. was founded on July 1, 2002 by Marly C. Silverman, a Chronic Fatigue Syndrome and fibromyalgia patient. Our mission is to raise awareness of the plight of persons with chronic fatigue syndrome, fibromyalgia, Gulf War illness, multiple chemical sensitivities, environmental illnesses, and persistent Lyme disease and advocate on quality of life issues.
In 2008, P.A.N.D.O.R.A in partnership with the Lanford Foundation-Lifelyme, Inc. , established the NeuroEndocrineImmune (NEI) CenterT, a community, patient-driven grass roots project to be based in New Jersey. The NEI CenterT will be the first research center dedicated to understanding and treating chronic neuroendocrineimmune illnesses.
ME: Biomedical Research: Appearances can be Deceptive
Sir,
A letter appeared Feb. 6 entitled ‘Breaking the ME Enigma’. In the final paragraph it says, ‘Above all, we should fund biomedical research to resolve the enigma of the underlying pathology of this illness… ‘
This is all very well, but please note that three of the signatories are officers of the All Party Parliamentary Group on ME (APPG), with two others – the ME Association and Action for ME providing the secretariat. Over the eleven years the APPG has existed, the British Government has not put a single penny into ME biomedical research, preferring instead to fund psychological models of treatment, notably Cognitive Behavioural Therapy.
The APPG has to date devised no effective strategy for addressing that deficiency.
ME patients are frustrated in that the APPG does not adhere to accurate definitions of the neurological illness Myalgic Encephalomyelitis. Disappointingly, it supports Government Reports which are more to do with poorly defined fatigue and which recommend cheap, inappropriate options (psychological models of treatment) as far as ME is concerned.
The pivotal issue of biomedical research rarely appears on the agenda at APPG meetings; indeed, recent meetings have been largely about the clinics set up following the CMO Report on ‘CFS/ME’ 2002; clinics which offer the type of treatment described above and which ME patients throughout England condemn as inappropriate, if not irrelevant, to their plight.
RiME wrote to all 646 MPs in 2008 asking whether or not they think the British Government should be funding research into the underlying physical causes and disease process of ME. Only 66 have so far ticked the ‘Yes’ box. Many members of the APPG, including its Chair, have not even replied.
‘Breaking the ME enigma’ Daily Telegraph, 6 February 2010
SIR –
The death of Lynn Gilderdale and the humane verdict in the trial of her mother brought home to many people for the first time what a devastating illness myalgic encephalomyelitis (ME) can be.
Many of the estimated quarter of a million people with ME in Britain experience not only extreme pain and disability, but also incomprehension, ignorance, lack of sympathy and at times outright hostility, not only from the public but also from professionals responsible for their care.
Such lack of understanding even extends to blaming parents for the severity of their child’s illness.
It is time the nation began to take ME seriously. Provision of adequate clinical and other services by properly informed and sympathetic professionals is currently subject to a postcode lottery. Such provision should avoid inappropriate treatments, and range from support for home tuition for school-age children to respite care for the severely affected.
Above all, we should fund biomedical research to resolve the enigma of the underlying pathology of this illness. We should build on recent scientific advances to develop effective treatments, so that no one in future need experience the pain, isolation and despair that were Lynn Gilderdale’s fate.
Countess of Mar Secretary, All Party Parliamentary Group on ME
Dr Neil Abbot Operations Director, ME Research UK
Jane Colby Executive Director, The Young ME Sufferers Trust
Anne Faulkner Hon Director, CFS Research Foundation
Tanya Harrison Chairman, BRAME
Malcolm Hooper Emeritus Professor of Medicinal Chemistry, University of Sunderland
Andy Kerr MSP
Dr Jonathan Kerr Consultant Senior Lecturer, St George’s, University of London
Simon Lawrence Chairman, 25 per cent ME Group
Kathleen McCall Chairman, Invest in ME
Dr Luis Nacul Consultant in Public Health, London School of Hygiene and Tropical Medicine
Professor Derek Pheby National ME/CFS Observatory
Neil Riley Chairman, ME Association
Dr Charles Shepherd
Dr Nigel Speight
Sir Peter Spencer Chief Executive Officer, Action for ME
Des Turner MP Chairman, All Party Parliamentary Group on ME
Dr William Weir
Mary-Jane Willows Chief Executive Officer, Association of Young People with ME
Andrew Stunell MP Vice Chairman, All Party Parliamentary Group for ME/CFS
SIR – The death of Lynn Gilderdale and the humane verdict in the trial of her mother brought home to many people for the first time what a devastating illness myalgic encephalomyelitis (ME) can be.
Many of the estimated quarter of a million people with ME in Britain experience not only extreme pain and disability, but also incomprehension, ignorance, lack of sympathy and at times outright hostility, not only from the public but also from professionals responsible for their care.
Such lack of understanding even extends to blaming parents for the severity of their child’s illness.
It is time the nation began to take ME seriously. Provision of adequate clinical and other services by properly informed and sympathetic professionals is currently subject to a postcode lottery. Such provision should avoid inappropriate treatments, and range from support for home tuition for school-age children to respite care for the severely affected.
Above all, we should fund biomedical research to resolve the enigma of the underlying pathology of this illness. We should build on recent scientific advances to develop effective treatments, so that no one in future need experience the pain, isolation and despair that were Lynn Gilderdale’s fate.
Countess of Mar
Secretary, All Party Parliamentary Group on ME Dr Neil Abbot
Operations Director, ME Research UK Jane Colby
Executive Director, The Young ME Sufferers Trust Anne Faulkner
Hon Director, CFS Research Foundation Tanya Harrison
Chairman, BRAME Malcolm Hooper
Emeritus Professor of Medicinal Chemistry, University of Sunderland Andy Kerr MSP Dr Jonathan Kerr
Consultant Senior Lecturer, St George’s, University of London Simon Lawrence Chairman, 25 per cent ME Group Kathleen McCall
Chairman, Invest in ME Dr Luis Nacul
Consultant in Public Health, London School of Hygiene and Tropical Medicine Professor Derek Pheby
National ME/CFS Observatory Neil Riley Chairman, ME Association Dr Charles Shepherd Dr Nigel Speight Sir Peter Spencer
Chief Executive Officer, Action for ME Des Turner MP
Chairman, All Party Parliamentary Group on ME Dr William Weir Mary-Jane Willows
Chief Executive Officer, Association of Young People with ME Andrew Stunell MP
Vice Chairman, All Party Parliamentary Group for ME
meagenda.wordpress.com 