Time for a Patient Revolution

by Simon McGrath

revolutionary-woman2Let the Patient Revolution begin‘. A militant cry from those difficult, demanding ME/CFS patients unwilling to listen to doctors and researchers who only have patients’ best interests at heart? No, this dramatic call comes from a pillar of the medical establishment, the British Medical Journal (BMJ). Its recent editorial argues that the healthcare system as a whole is, far from being benign, actually badly broken and can only be fixed by an active partnership with patients:


[Most patients face] tests and treatments whose merits are hyped and harms underplayed…

Practice is informed by an incomplete research base bedevilled with selection and reporting bias, and at worst fraud. The preservation of institutional bureaucracies, as well as professional and commercial vested interests, have consistently trumped the interests of patients. The healthcare industrial complex stands accused of losing its moral purpose…

How better to [fix this] than to enlist the help of those whom the system is supposed to serve—patients?

BMJ Editorial: Let the patient revolution begin, May 2013

The BMJ may not have had ME/CFS in mind specifically, but their comment “Far more than clinicians, patients understand the realities of their condition, the impact of disease and its treatment on their lives, and how services could be better designed to help them” sums up the ME/CFS predicament perfectly.

Some patients have good constructive relationships with their physicians – Dan Peterson’s patients are practically queuing up to praise him. Yet many have had nightmares, with doctors who want to dictate to patients without listening to the reality of their condition, and who sometimes seem to think this illness isn’t much more than an attitude problem. It varies a lot – I’ve experienced both sides of the coin myself – but there are way too many examples of patients having horrific experiences at the hands of the health service. And for those severely-affected, there is often nothing on offer at all.

Things should be changing in the UK, at least in theory. The Government’s new Health and Social Care Act aims for there to be “no decision about me, without me” for patients and their own care. How well these high ideals translate into better patient care remains to be seen.

‘Healthcare won’t get better until patients play a leading role in fixing it’

That quote comes from the BMJ editorial, again – but, of course, patients across diseases have been calling for change for years. One of the leading advocates for putting patients centre-stage is e-Patient Dave, (Dave deBronkart) who saysThe most underutilized resource in all of healthcare is the patient“. While the BMJ said “Patient engagement is seen as a way to help health systems become sustainable. Some have argued that it is the “blockbuster drug of the century” and will deliver equivalent dividends.”

Patients Rising: TED talk from e-Patient Dave

The e-patient (and how the web changed everything)

Dave says that a key figure in the development of patients who were partners in their own treatment was Tom Ferguson, medical editor of the hippy Whole Earth Catalogue. Tom pointed out in the 1970s that most healthcare consists of healthy people looking after themselves, but somehow when people become ill, their healthcare is all down to someone else. So he coined the word e-patient, who he called Equipped, Enabled, Empowered and Engaged (to which others have added Equals and Expert), to describe patients actively engaged in treating their disease.

Then the web changed everything – Dave emphasised how the Internet lets patients not only find information but also connect with one another. This makes new things possible, including in his case patients finding doctors in his region that were experienced in using a new and aggressive treatment for his terminal-diagnosed cancer. The patients said it probably wouldn’t work, but it might – and in his case it did (see his BMJ article: “How the e-patient community helped save my life”). This isn’t to suggest that there is a miracle cure for ME/CFS out there waiting to be found online, but it does show how online patients can provide well-informed, highly relevant information that wouldn’t otherwise be available. The BMJ too emphasise the value of patient communities:

Online patient communities where patients meet, talk, support, inform, and coach each other are empowering patients… They also provide a rich and as yet largely untapped learning resource for health professionals. Examples include [not Phoenix Rising, sadly!] There are salutary lessons in the gulf between conversations in the clinic and the concerns patients share with their peers[BMJ editorial]

Unfortunately, not all doctors see patient forums so positively.

Clinics that give patients what they want?

As the BMJ said, “Far more than clinicians, patients understand the realities of their condition and how services could be better designed to help them” and this is probably nowhere more true than for ME/CFS.

The UK Government says the ‘no decision about me without me’ approach also applies to the design of health and social care services. @Firestormm, for example, found the new GP Commissioners in Cornwall were willing to listen to patients when the NHS CFS/ME Service was under threat in 2011/12, and that these talks led to the preservation of a much needed service and actually saw funding increase: I’m hoping he’ll post more in the comments section. However, it is early days for the new system of GP Commissioners, so it’s not yet clear if this new initiative from the Government – to give decision-making and funding responsibility to local GP experts – will translate to better, more responsive ME/CFS services right across the country.

Putting patients at the heart of research

omiAs well as medical care itself, medical research needs to change too, so that it really does serve the interests of patients. The United States government has set up a new agency, Patient-Centred Outcomes Research Institute (PCORI), to focus on outcomes that matter most to patients. This is serious work: last year they had a budget of $150m. This year both CFIDS and the Open Medicine Institute (OMI) are applying for a share of $12 million to establish patient networks of individuals who (choose to) provide their own clinical and self-reported data for research studies that promise to improve outcomes for patients. Phoenix Rising is supporting the OMI application, so if it’s successful we could be part of that network, helping to power better research. More about the OMI initiative below.

In the UK, groups of patients, carers, and clinicians are focusing on the questions about treatment outcomes – good and bad – that researchers need to answer. The results is DUETS, a database of uncertainties about the effects of treatment. Unfortunately, such an enlightened approach has yet to reach ME/CFS, as was shown by the world’s largest CFS clinical trial, the £5 million PACE study, which defined success and failure without consulting patients.

Not everyone wants to collaborate with patients…

The PACE Trial’s recent paper claimed that 22% of patients ‘recovered’ with CBT or Graded Exercise (compared with 7% without). However, they had abandoned their original protocol definition of recovery and created a new version with much looser criteria. To give an idea of how far-fetched some of the new ‘recovery’ criteria are, 13% of patients met the fatigue or function ‘recovery’ criteria at the start of the trial – while simultaneously meeting criteria for ‘severe and disabling fatigue’. And a quarter of patients seen in wider clinical practice had physical function scores that met PACE recovery criteria.

Patients were not consulted about what should define recovery, not were participants asked if they considered themselves recovered. Surely the prime arbiters of what counts as recovery should be patients, who live the real-world consequences of the illness?

When it came to measuring treatment ‘Harms’, the PACE trial did go further in collecting data than any previous study of CBT and graded exercise. But they revised the original protocol definition of ‘Harms’, making it harder to for problems to count as ‘harm’, and made it technically almost impossible for anyone to deteriorate seriously in the second 6 months of the trial.

As well as ‘no decision about me without me’, perhaps we also need a commitment from the Government there should be ‘no research about me, without me‘. There is progress here, and the National Institute of Health Research, one of the biggest UK funding bodies for clinical research, now actively encourages researchers to involved patients in all stages of research, as partners rather than simply as trial participants.

It’s also worth noting that ME/CFS patient surveys – based on patients receiving normal clinical services rather than the highly controlled therapy of research trials – consistently find high levels of adverse reactions with CBT and graded exercise. This information hasn’t always been taken very seriously by researchers and clinicians.

Elsewhere, The Cochrane Collaboration has raised standards in medicines by producing systematic reviews of evidence on a topic, so that doctors can see the whole picture rather than relying on cherry-picked studies for information. Every Cochrane Review has a plain language summary aimed at patients, and they’ve gone further with the creation of the Cochrane Consumer Network, ccnet, that involves patients and patient advocates in preparing reviews – to make sure that Reviews address the issues that matter most to patients. Sadly there is no patient involvement in the forthcoming review on exercise therapy for CFS. There will, though, be an opportunity for patients to publish comments on the review – and hopefully patients will be involved in the future Reviews.

Other organisations show new signs of being willing to listen too. The recent FDA workshop gave over much of the first day to patients talking about their experiences. It quickly became clear that many at the FDA had no idea of the level of suffering of ME/CFS patients, but the often-moving testimony from sufferers did sem to make a difference.

Give us our data!

It’s pretty hard to be an engaged e-patient if you can’t even read the research, and most CFS papers are currently locked away behind a paywall. Ironically, even the ‘Let the patient revolution begin’ BMJ editorial initially couldn’t be read by patients as it was paywalled, but credit is due to the BMJ who made it open access when the problem was pointed out to them. Nonetheless, its series of patient essays, including e-patient Dave’s, remain paywalled despite their obvious value for patient engagement.

Fortunately, most new publicly funded research both in the UK and the US has to be made open access, though compliance is not enforced and that still leaves decades-worth of research locked away from patients. There is also a new movement for ‘Open Data‘ that believes all scientific data (suitably anonymised as needed to protect patient confidentiality) should be available for anyone to analyse, even patients. Not all researchers are keen on having their data scrutinised, but the UK government is backing calls from the Wellcome Trust to make research funded by the government and charities freely available.

Patients doing it for themselves

Patients are increasingly becoming a driving force in research, rather than simply being consumers or particpants:

Crowd-sourcing to speed up research

The Open Medicine Institute’s OpenMedNet gives patients the chance to share their clinical data, biological samples or both – sharing as much or as little as they wish with researchers who will suddenly have the chance to conduct studies with thousands of patients.  There are plans to let patients add data from devices such as Fitbit that monitor activity levels and sleep, to give researchers an unparalleled opportunity to study patients ‘in the wild’ rather than just in the lab.  PatientsLikeMe is another site that lets patients network and share data with other patients and researchers, though not specifically for ME/CFS.

Crowd-funding too

meandyouPatients aren’t just giving researchers data now, they are starting to directly fund research themselves too. Maria Gjerpe’s incredible MEandYou initiative raised $430,000 in 90 days for the planned Norwegian multi-centre trial of the potential ME/CFS drug Rituximab. But MEandYou achieved far more than that. The fact that patients were resorting to funding their own research generated huge media and political interest, especially in Norway where, as Maria says, it changed attitudes and helped prompt the Norwegian Research council into funding a large chunk of the Rituximab trial, having earlier turned it down.

Crowdfunding is catching on: Ryan Prior turned to patients to fund his ‘Blue ribbon’ documentary exposing the terrible neglect of ME/CFS – and reached the $12,000 target in half the planned 36 days.

Patients Rising

There are a raft of opportunities coming together that could help tackle the major problems faced by ME/CFS patients. The medical establishment is finally beginning to wake up to the need for radical change, no doubt prompted by years of advocacy from patients pointing out that their needs are being ignored in healthcare and research. And there is recognition too that patients are central to fixing the system. Legislation in the UK will, at least in theory, give patients a much greater say. Research is being opened up to patients, while new technology and a can-do spirit from people like the Open Medicine Institute creates brand new ways for patients to contribute.

Not everyone will welcome a patient revolution, and I suspect that the medical establishment will resist more when it comes to ME/CFS than with most other diseases. It’s crucial that ME/CFS patients keep up the pressure and exploit these new opportunities, but I believe there has never been such a promising time to get a better deal for ME/CFS patients.


Credits: Thanks to OCAL at clickr.com for the revolutionary woman icon, and to those who contributed ideas including Esther12 (who set up the thread that sparked this off) and Tom Kindlon.


Simon McGrath tweets about ME/CFS Research


How You Can Help

Phoenix Rising is a registered 501 c.(3) non profit.  We support ME/CFS and NEID patients through rigorous reporting, reliable information, effective advocacy and the provision of online services which empower patients and help them to cope with their isolation.

There are many ways you can help Phoenix Rising to continue its work. If you feel able to offer your time and talent, we could really use some more authors, proof-readers, fundraisers, technicians etc. and we’d love to expand our Board of Directors. So, if you think you can help then please contact Mark through the Forum.

And don’t forget: you can always support our efforts at no cost to yourself as you shop online! To find out more, visit Phoenix Rising’s Donate page by clicking the button below.



Share this!