let's start at the very beginning

Sunday, 9 May 2010

M.E. Awareness Week 2010 - The Year In Review

Big thanks to Justin Sherman of the Brisbane Lions for supporting ME/CFS Awareness – our inaugural celeb. Former Lions player, Alastair Lynch, was a sufferer. Ta also to my sister-in-law for organising the pic.

justin sherman supporting me/cfs awareness

For ME Awareness Week I’m reprising last year’s approach, which covered the main events relating to ME/CFS in the Western world. There is a collated list of other people blogging for ME Awareness in May here, add your name if you are too.

So. 2010 - what a year! Seriously! But I’ll endeavour to be brief, for my sake as well as yours. Here’s some of what went down…

THE USA: SCIENCE AND FORWARD MOVEMENT

XMRV

The Whittemore Peterson Institute for Neuro-Immune Disease (WPI) released a ground-breaking study suggesting a retrovirus called XMRV may possibly be implicated in ME/CFS.

Some feel this is a holy grail moment in the history of this illness, while others are more cautious. Most of us in the ME community are closely watching the science unfold. It’s early days yet, but if causation is able to be proven it will be a massive breakthrough.

Follow-up studies to the initial study did not seem promising, however they were not replication studies and used different technologies than the original study. As the WPI explain:

“Simply stated the only validated reliable methods for detecting XMRV in CFS patients, to date, are the methods described in Science. Failure to use these methods and validated reagents has resulted in the failure to detect XMRV. A failure to detect XMRV is not the same as absence of this virus in patients with CFS.”

A quick look at the authors and the patient cohorts speaks volumes. What is predictable is that the people who made notably negative utterances are the ones with the most to lose, those who have built careers on the psychiatric paradigm of ME/CFS. (Illness behaviour + deconditioning = disability, treatable with graded exercise/behavioural therapies.)

Annette Whittemore’s letter to Dr McClure summarises the issues of concern in relation to the negative studies after the WPI’s initial study. These concerns are regarding differences in patient cohort (an incredibly important issue in ME/CFS research) and differences in technique. I have enjoyed observing and learning from the patient community as they forensically dissect all the research as it comes out. The XMRV finding is a good news story for us. Whatever the final outcome, it has shone a much-needed spotlight onto biomedical research into ME/CFS.

If XMRV turns out not to be causative, the critical need for well-selected patient cohorts for future biomedical research will hopefully have been highlighted. The problem of diagnostic criteria used to select patients for research is an ongoing problem in the study of ME/CFS - until it’s addressed it’s hard to see how giant leaps forward can occur. I’ve said it before and I’ll say it again, all researchers should be using the Canadian Consensus Criteria. These were released in 2003 and it is outrageous that 7 years later this has not occurred. Yes, I’m a broken record.

Dr David Bell, long-time stalwart, has issued a personal appeal for donations to the WPI. He expresses great concern that the politics surrounding ME/CFS are now stifling research into XMRV. He’s been around for many years and has seen this happen before. He says:

“It is easy to dismiss my remarks to follow by saying that I am biased. And it is true, I am very biased and for twenty five years I have quietly sat on the sidelines believing that science will win out and true progress will be made. I am beginning to think this has been a great mistake. The profession I love has failed miserably.

and

“We cannot wait ten years for science to grind outs its conclusions.”

I urge you to read his letter and especially to consider his request for $10 donations to the WPI.

The XMRV discovery is such big news that I think we have to crown the USA as queen bee in the hive of interesting ME/CFS happenings this year. For more info on what’s new in XMRV see XMRV Buzz, updated by Cort Johnson. Interestingly, although they’re looking into it, the USA have not yet banned blood donations from people with ME/CFS as a precautionary measure to protect the blood supply, although other countries have.

THE CENTRES FOR DISEASE CONTROL. NOT CONTROLLING THE SPREAD OF ‘CFS’ SINCE…OH, FOREVER.

Meanwhile, at the CDC the times they are a changin’. Bill Reeves, boss of the CFS department, finally got himself ousted. Bill, Bill, we knew you well. We weren’t even surprised when immediately after the WPI’s XMRV study you said it would never be replicated. So pessimistic! Of course it wouldn’t be replicated, with you at the helm! Listening to your utterances was like watching the Titanic commence its slow descent into the deeps, in an alternate universe where the passengers were all safely on a life raft and waved at you happily as you disappeared from view. Goodbye and good riddance.

BIO BANKS

Two new bio banks are being established, each with slightly different approaches. This is awesome, bio banks represent exciting opportunities for future research.

One is being established by the CFIDS Association of America and is called the Solve CFS BioBank. The second bio bank is being established by the WPI, who state it will be the “world’s largest ME/CFS sample repository”.

Both projects look promising and are seeking donations.

CFSAC

The federal government’s Chronic Fatigue Syndrome Advisory Committee (CFSAC) meeting was held on May 10. As discussed on ProHealth:

“It’s a time of high tension in the ME/CFS community. Many wonder if and when CFS Advisory Committee (CFSAC) recommendations will be honored, whether meaningful research will be supported, and even whether this meeting may mark the Committee’s end (its charter expires in September).”

Mary Schweitzer is brilliant at expressing the issues, her excellent testimony is well worth reading or viewing. Annette Whittemore’s testimony is also worth reading or viewing. All written testimonies released before the meeting are here, and some spoken testimonies are here. Since I put this post up, the whole shebang is now available on YouTube and Hillary Johnson has written a totally fabulous and hilarious post on the meeting.

THE UK: PEDALLING BACKWARDS

The UK had a shocker last year and have followed it up this year with another. If the USA is 2010 queen bee, then the UK has to be terrorist drone bee. The rate at which things are going backwards is alarming. Last year the NICE guidelines were upheld. That was bad. The NICE guidelines tell NHS doctors how to (mis)treat patients.

THE USUAL SUSPECTS

This year the psych lobby mounted a rapid response to the initial XMRV study, pumping out dubious negative studies faster than I eat Vegemite on toast. The ubiquitous Simon Wessely was a naysayer:

"We're not going to go doing more and more tests to find out what was the virus because, frankly, even if we found it there's nothing we're going to do about it. We're in the business of rehabilitation."

As alluded to in the US section, the shrinks in the UK who have built careers on the psychologising of ME/CFS via the creation of diluted diagnostic definitions were quick to offer up ‘their’ patients for XMRV research. The outcome was predictable. The studies did not find XMRV. This is why veterans like Dr David Bell are rightly concerned about the future of XMRV research.

UNUSUAL SUSPECT

Recently the British General Medical Council, after 9 years of sniper fire, finally took down Dr Sarah Myhill, an ME specialist greatly valued by her patients. Although the establishment seem to have been after her for years, no patient had been harmed or made a complaint against her. An ongoing issue appears to be that some GPs are unhappy with her for prescribing B12 injections. It beggars belief that this would be the impetus for yet another complaint since she’s been cleared so many times before, and indeed the GMC didn’t run with that again until the most recent complaint, this time about her website, instigated by a member of an online community of (self-described) sceptics devoted to fighting ‘bad science’. The complainant expressed his surprise that the GMC paid attention to his email, albeit in a hostile discussion thread where members dismiss Dr Myhill as a quack and her patients as unthinking acolytes. I'm pretty sceptical myself on the whole, so to me all this is sad. If they had turned their attention to the actual bad science rampant in the study and treatment of ME/CFS, they could be a great force for positive change, rather than needlessly taking away a doctor whom many depend upon.

It is hard to explain to people outside the ME community how thin on the ground good ME doctors are, how important they are to the patient community - often a beacon in a storm of medical apathy. At the GMC hearing Dr Myhill lost the right to prescribe.

“The judgement of the IOP was based on no charges, no evidence and no case. The IOP response was irrational and not evidence based. The sanctions are completely out of proportion to the allegations made.”

- Dr Sarah Myhill

Of my personal friends with ME in Australia, I barely know anyone who isn’t prescribed B12, so from this side of the pond it all seems bizarre. I was also astounded at the degree to which the GMC lack consistency. In January this year, a doctor involved in the death of numerous patients had a GMC hearing and only lost the right to prescribe opiates. In that case the GMC took into account the 200 letters of support from patients and colleagues. In Dr Myhill’s case, the GMC received 800 letters of support, but did not take these into account and went out of their way to state they made their judgement without “fear or favour”. There are far too many procedural anomalies in Dr Myhill’s case for me to detail here, but people have described the GMC as a ‘kangaroo court’ and unfortunately it seems an apt description.

SMALL VINDICATION

On the bright side, the FINE trial failed. Hallelujah. This was a long-term, government-funded study into nurse-led CBT and GET approaches (cognitive behavioural/graded exercise therapies) and cost over a million pounds. They could have used that money for something useful, like biomedical research, but instead they used it to find out what we could have told them all along. It’s immensely frustrating. Hopefully the failure of the trial will induce someone in their bureaucratic ivory tower to see sense very soon. As Invest in M.E. said, “The FINE trials and the PACE trials seem to be the two ugly sisters of MRC policy on ME - leaving biomedical research eternally to play a Cinderella role.”

LIGHTS, CAMERA…

In other good news in the UK there is a doco about M.E. being made which looks like it’s going to be a ripper. Stay tuned.

AUSTRALIA: NOTHING TO SEE HERE

In light of the potential XMRV link, the Australian Red Cross amended their blood donation guidelines. Anyone ever diagnosed with ME/CFS is indefinitely deferred from making donations, whereas previously patients were only banned until ‘full recovery’. I think the revised approach is prudent, it’s better to be safe than sorry when it comes to protecting the blood supply.

The Australian Red Cross ban on donations has been reported in some places as if this were new, but the policy of not accepting donations unless an ME/CFS patient had made a full recovery, which had to be confirmed in a letter from the treating doctor, is long-standing. They will review the current arrangement in 2 years time.

ME/CFS Australia has a new management structure and is now to be administered by the Victorian group, which has access to more resources. ME/CFS Australia has a good blog (though infrequently updated, not that I can talk) and released a concise article about how dismally the Australian health system fails people with ME/CFS:

“Government funded ME/CFS research is approximately $1 per patient (compared to $400 for each AIDS patient)…

and

…Despite ME/CFS becoming prominent in the last 25 years, there are no Government-funded specialty programs treating people with ME/CFS (there are some fatigue clinics) and there is no Government-funded clinical or epidemiological research being conducted in Australia.”

Charmed, I’m sure. They care enough to stop healthy people receiving blood from our pestilent selves, but are otherwise leaving us to rot in our bedrooms.

NEW ZEALAND

New Zealand has also reviewed their blood donation guidelines:

“New Zealand's blood banks plan to reject donors with a record of chronic fatigue syndrome (CFS). The move follows research overseas which has raised concerns about the potential for a recently identified virus XMRV to spread through blood transfusions.”

CANADA: WE LOVE YOU

Canada has also banned blood donation from people with ME, and were the first country to do so. This year Canada officially recognised ME as a neurological illness. This is in alignment with the World Health Organisation’s categorisation of the illness since 1969.

They already have the world’s best guidelines for diagnosis and treatment, and now ME is formally recognised as a neurological illness which has major implications for welfare support and access to medical care. I'm sure it's a long way from being all roses for patients over there, but mad props for big steps in the right direction. Let’s all move and become patients of Dr Byron Hyde, shall we? I’ll start learning the anthem.

THAT’S ALL, FOLKS

I haven’t covered everything, just the major stories, and even then not in depth. Feel free to add any additional 2010 ME/CFS happenings in the comments. What have I missed that deserves mention?

Thanks for taking the time to read. I know this is not everyone’s cup of tea, and to be frank, I wish it weren’t mine, either, but I am passionate about fighting for improved quality of life for people with ME. When we’re both up to it, my good friend and I have short chats, he is very ill and sick in bed for some years now. His illness has progressed from moderate to severe, despite his diligence in seeking treatment. He is brave, never complains, and jokes that ‘CFS’ is short for ‘Chronically F***ed Situation’. I feel helpless in the face of his suffering and would do anything to be able to wave a magic wand to make things better. I’d love for him to be able to surf in the ocean, build things, drive his ute wherever he wants. It’s ordinary people like us who get this disease: anyone, any day, out of the blue. It was me, it was him, it could be you. Our story could be your story.

It doesn’t have to be this way. Good research can and will help, I dearly want to see progress in my lifetime. Please consider donating time or funds to one of the research organisations mentioned in this post, or doing whatever you can to raise awareness. If you blog, tweet or chat on facebook you can mention ME Awareness. I also have some blue ribbons, if anyone in Australia would like to spread the blue ribbon love, email a postal address and it’ll be on its way. (I have 2 left!)

blogging for me & cfs awareness

14 comments:

  1. What an excellent, well-written and thorough summary! Thanks for taking the time to put this together. It really has been an amazing year, hasn't it? Hopefully the positive progress of this year will outweigh any of the negative and lead to even more progress in the coming months. The answers certainly can't come soon enough.

    I loved your closing remarks as well: "It’s ordinary people like us who get this disease: anyone, any day, out of the blue. It was me, it was him, it could be you. Our story could be your story."

    Poignant and well said. Thank you for this point.

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  2. Great summary & great post, wish I would write like that

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  3. Thanks so much Laurel, it's certainly been an action-packed year, let's hope the coming year is too, and that the news is all good! You're so right, the answers can't come soon enough.

    Hi Ash, these posts take forever, you should see how bad the early drafts are! The good thing about words is they can be rearranged until things are coherent. ;)

    I really appreciate you both taking the time to read it all and leave a comment.

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  4. Thanks and greetings, dear Greenwords, from the zone of the terrorist drone bee. I can't begin to say how much I appreciate this summary - fine work.

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  5. Thanks so much for this brilliant and eloquent summary, Greenwords. It must've taken a hell of a lot of work. Your annual summaries are actually so good that I'm beginning to wonder if I can just ignore all ME happenings for twelve months and then check in here for the yearly update! ;)

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  6. Thank you for your time and great effort. It is lovely to read such order on my day of confusion : )

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  7. Signs, hello to you in the zone of the terrorist drone bee (am tempted to insert sound effects), and thank you!

    Hi sweet Amy, I considered not doing a summary this year, so thank you for your kind words. I'm sure there are important things I haven't mentioned but there have to be parameters or I'd rabbit on for pages.

    sleepysunshine, thanks for dropping by and for reading, can relate to the day of confusion, every day is one of those for me! ;)

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  8. It has been a busy year, hasn't it.

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  9. A very well written blog post. It seems in recent times there has been a lot of back peddling here in terrorist drone bee territory. I'm disgusted to read about Dr Myhill.

    There is a new broom sweeping the UK in the form of a new government: we can only hope the habit of back peddling will be consigned to the past (I won't hold my breath though). I'm going away now to add your link to my blog.

    Shirl x

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  10. A really busy year, cinderkeys.

    I was wondering today whether the new govt would help at all, Shirl. One can only hope!

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  11. I was very impressed that you got the ME/CFS Awareness celeb endorsement! I hope he (or the whole team) will do it again next year.

    Your writing impressed me even more. It is such a great and easy-to-understand summary of the year with your magical touch I love. ;-)

    Rachel

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  12. Anonymous25/5/10

    Thanks. As others have said, a brilliant summary. I have ME/CFS (I don't want to get into the name/definition debate, but it sucks whatever it is, and I'm certainly not "just tired"). I used to blog about it, but I found that the constant focus on my health dragged it and me down. These days I pretty much studiosly avoid such blogs or really any news from the ME/CFS world. But you made me feel guilty for not being more active in fighting for recognition and research.

    I'm so glad that you spent some precious energy on your yearly wrap-up. News filters through in a very diffuse manner, but summaries like this demonstrate so bleakly how little is being done for such a large cohort of sick people, and inspire people to fight for change. You've inspired me. Thanks.

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  13. Rachel, thanks for your generous words, as always.

    Anonymous, thanks for stopping by and for taking the time to share your thoughts. I'm sorry to hear that blogging kinda dragged you down, in that case it sounds like you made a wise decision to steer clear of things for a bit. I don't find blogging brings me down, but I don't think about ME-related stuff constantly, I can imagine that would be overwhelming. You're right that news filters through in a diffuse manner, it's hard to get a grip on it all sometimes. I really hope you can find a way to express your interest in advocacy in a way that's positive for you. Let me know what you get up to, or if you start blogging again!

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  14. Today no one needs to suffer with CFIDS, treatment is already known www.cfids.info

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