(An earlier version of this blog appeared on Phoenix Rising)
‘Let the Patient Revolution Begin’
‘Let the Patient Revolution Begin’A militant cry from those difficult ME/CFS patients unwilling to listen to doctors, researchers and government departments who only have patients’ best interests at heart? No, this dramatic call comes from that pillar of the medical establishment, the British Medical Journal (BMJ). It’s recent editorial argues that the healthcare system as a whole is 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, for instance, are practically queuing up to praise him. Yet many have had a terrible time with doctors who dictate to patients without really listening to them, and who sometimes 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 too many examples of patients having horrific experiences at the hands of the health service. And for the severely-affected there is often nothing on offer at all.
‘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 from many disorders have been calling for change for years. One of the leading advocates for putting patients centre-stage is e-Patient Dave, (Dave deBronkart) who says “The most underutilized resource in all of healthcare is the patient“.
The BMJ said “Patient engagement is seen as a way to help health systems become sustainable”. Some have argued 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)
Tom Ferguson, the medical editor of the hippy Whole Earth Catalogue, played a key role in Dave’s understanding of patient empowerment. Tom pointed out in the 1970’s that most healthcare consisted of healthy people looking after themselves, but somehow when people become ill, their healthcare became the provence of the health care system. So he coined the word e-patient, to describe a person who was Equipped, Enabled, Empowered and Engaged (to which others have added Equals and Expert), in actively treating their disease.
Then the web changed everything. Dave emphasized that the Internet lets patients find information and connect with one another. In his case, it allowed him to find local doctors using a new and aggressive treatment for his terminal-diagnosed cancer that ended up saving his life. The patients who lead him to the treatment 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 a miracle cure for ME/CFS can be found online, but it does show how online patients can access well-informed, highly relevant information that wouldn’t otherwise be available. The BMJ too emphasizes 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. ] 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?
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.
Things should be changing in the UK, at least in theory. The UK 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. This sounds good, but how well these ideals translate into better patient care remains to be seen.
Putting Patients at the Heart of Research
Medical research needs to change so that it serves the interests of patients as well. 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: their budget was $150m and they plan to spend $3.5 billion by 2019.
This year both the CFIDS Association of America and the Open Medicine Institute (OMI) applied for a share of $12 million to establish patient networks of individuals willing to provide clinical and self-reported data for research studies that promise to improve outcomes for patients. (Health Rising is supporting both applications. More about the OMI initiative below.)
In the UK, groups of patients, carers, and clinicians are focusing on 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, the authors 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 the patients in the trial met the fatigue or function ‘recovery’ criteria at the start of the trial, while simultaneously meeting criteria for ‘severe and disabling fatigue’.
Plus a quarter of the new patients seen in clinical practice had physical function scores that met PACE criteria for ‘recovery’. Surely the prime arbiters of what counts as recovery should be patients, who live the real-world consequences of the illness, not researchers who might be more concerned with making their study look good?
When it came to measuring treatment ‘Harms’, the PACE trial went further in collecting data than any previous CBT/GET study, but they revised the original protocol definition of ‘Harms’, making it harder to for problems to count as ‘harm’, and made it technically impossible for anyone to deteriorate seriously in the second 6 months of the trial.
It’s worth noting that ME/CFS patient surveys based on patients receiving normal clinical services rather than the highly controlled therapies 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. Patient advocate and researcher Tom Kindlon has highlighted the problems of poor Harms reporting in ME/CFS research in a peer-reviewed paper.
Raising Standards
Elsewhere, The Cochrane Collaboration has raised standards by producing systematic reviews of evidence on a topic, so that doctors can see the whole picture rather than relying on cherry-picked studies. 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 – though an undertaking has been made that patients will be involved in 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 and the often-moving testimony from sufferers seemed to make a difference.
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 will give patients the opportunity to share as little or as much of their clinical data, biological samples or both with researchers. Including devices such as Fitbit that monitor activity levels and sleep, will give researchers an unparalleled opportunity to study patients ‘in the wild’ rather than just in the lab. OpenMedNet has yet to go live, but the over 10,000 patients that have registered indicates a strong desire from the ME/CFS community to participate. The CFIDS Association of America is partnering with PatientsLikeMe to enable networking and data sharing between ME/CFS patients and researchers, and another similar venture is expected to come online soon.
Crowd-Funding Too
Patients 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. The fact that patients were resorting to funding their own research generated huge media and political interest, especially in Norway where Maria says it changed attitudes and helped prompt the Norwegian Research Council to switch direction and fund a large chunk of the Rituximab trial.
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, and, of course, the Canary in a Coal Mind crowdfunder raised an amazing $200,000 in 30 days.
Patients Rising
A raft of opportunities are coming together that could help the medical establishment 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. There is recognition too that patients are central to fixing the system.
The trend toward more patient input should mean better results.
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 organizations like the Open Medicine Institute creates 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 most other diseases. The problems with the IOM contract are an example of the HHS turning a deaf ear to patients and even to CFSAC.
Despite these setbacks I believe the new opportunities created by the movement to put patient views at the heart of health care and research, will make it increasingly difficult for researchers, clinicians and governments to block patients from taking a central role in deciding how their illness is studied and treated.
Credits: Thanks to OCAL at clickr.com for the revolutionary woman icon
I would love to find a doctor who would supervise my trial of B1, help me find the optimum dose, figure out what has caused problems, and gather the data.
B1 is helping me – and increase of maybe 20% in energy, somewhat less pain, and better sleeping – my husband has noticed the difference, and reminds me – but I’m doing this as a civilian guinea pig based on little real information, and with no way to measure, for example, blood levels of either B1 (water-soluble) or benfotiamine (the fat-soluble version) – so I could relate that to some measure of functionality. I’m fortunate that B1 is easily available without prescription, and has relatively few side effects (though I could use a doctor who know something to tell me if the problem I had was actually related to its use – instead of coincidental).
This should not be my job.
Alicia
Hi Alicia,
I am also doing the B-1 protocol with some success. But my Doctor is of little help to me. I developed chronic hives (a new symptom) after starting B-1. It seems there is little to do for chronic hives and my only choice is to give up the B-1 (which has changed my life) or live with the hives. Now I am researching histamine diets as a possible avenue for relief. I sure wish I had a doctor who could point me in the right direction.
Lynn
The internet and peers I have found via the internet have been my greatest resource. I saw a doctor who supervised my nurse practitioner while she was on leave over the summer. I told him I had ME. He asked me what it was. I asked for Naltrexone at a low dose, he had never heard of it being used for anything other than it’s labeled purpose. I explained what I could, how I had learned of LDN from peers and my own internet research. He told me he’d give me what ever I asked for so long as he didn’t believe that it wouldn’t cause me harm. If it wasn’t for the internet and e-peers I never would have learned of all the treatment options that have given me some improvement. If left to the doctors and what they believe, I’d be taking antidepressants that I don’t need and that only make me worse. Cheers to the e-ME-community!!!
I have pretty much totally given up on getting any help from the traditional MD’s! After 26 yrs with “chronic fatigue” and moving around a lot I haven’t found one single person in the medical profession who knows anything about my “condition” or seems to even care. They all seem to think it’s “just the depression/anxiety”!!! I’m so thankful for the internet. I found a very wise man who gave me a lot of wonderful advise in more natural treatments, but still need to find an MD who is willing to prescribe the natural form of Thyroid med, ERFA, oxytocin and possibly a month on cortisol to jump start things. Right now we have no insurance and I can’t afford to go to the Dr for even minor things…hoping that changes soon. I am trying to go grain-free, except for rice and oats, and I do think that is helping some…it’s hard to be strict, tho!
I don’t know where you are, I do know a doc who gives natural thyroid medicine, EHAC of St Louis. Since you mentioned it.
Hope people enjoy the article.
In a shameless plug of my tweeting (short, digestible nuggets on mecfs research) my twitter account is @sjmnotes https://twitter.com/sjmnotes.
I think the BMJ article is just lip service…
Let the patient revolution … with ME … and CFS [Rejected Letter].
Surmount the impasse around ME and CFS by using a diagnosis
based upon objective assessment of symptoms and biomarkers in research.
http://www.bmj.com/content/346/bmj.f2614/rr/665838
Good letter
To correct, “Canary in a Coal Mine” raised more than $200,000 in 30 days, not 90 days. Big difference, and shows the extent of support by those ill with ME/CFS and their supporters and caregivers and family members and great friends. It also shows how strong and dedicated these people are to get ME/CFS recognized as a legitimate and hugely debilitating disease.
This article is very forthright and enlightening. Glad to see that people from all over the world are putting more focus on ME/CFS research and treatment and making sure the message goes out that people’s lives are being changed drastically, negatively.
Yes, the Internet has made a tremendous difference in making available a huge amount of info for the patients and doctors; actually, more for the patients. Many are making their own diagnoses and going forth with their own treatments because of the lack of knowledge of most medical physicians. This has its bad and good sides.
Medical schools should be instructing would-be doctors about more diseases than they are presently. It’s heartening that more patients are being so vocal – they want help. And help is not so easily forthcoming. Doctors are oblivious, on the whole, to what patients are going through. It’s easy to believe that the doctors really don’t want to interest themselves in patients who complain too much!!
Thirty days – what an amazing display of the ME/CFS community to get their story out. Even now it’s a real jaw-dropper.
(I was responsible for the boo-boo, by the way. I asked Simon if I could put in a line about the film (Simon’s blog was made before the fundraiser), and I muffed the dates.)
Thanks, Carol
I started a website seven years ago to share information about my exhaustive search for effective treatments for CFS/FMS. Keeping in mind that we are all unique and what is helpful for some may not be helpful for others, I nonetheless found several cutting edge that contributed to a slow and steady recovery of my own health. These therapies were Oral Systemic Balance, LENS neurofeedback, and Nano Vi. Ironically none of these therapies were recommended to me by physicians. This is a reflection in my opinion of how broken and backwards our medical system is. I spent a small fortune and lots of time and travel pursuing many treatments and consulting with countless health professionals. Most of my health “adventures” were dead ends but eventually my efforts paid off. I am neither a physician or a scientist but I learned through trial and error how to heal my dysfunctional body and hopeful some of what I learned can help others. For more information go to my blog: http://www.fibrofriends.typepad.com
Congratulations on getting better, Darden. I haven’t heard of those treatments either – which, come to think of it, shows the power of the internet -as Simon suggested.
I think the thing that most excited me about Simon’s blog is the advent of relatively low-cost ways to gather data such as the IOM is pursuing. That will be very exciting when that comes on line. I imagine the CAA is developing something similar.
Plus one more group will be unveiling its new and very striking way for patients to find good treatments soon.
You tease! Looking forward to reading your blog on it.
Sorry for being off-topic but speaking of Cort’s blog, I just noticed there is now a search box on top – great thing to have!
Always, always, follow the money! Why is MECFS a threat to the medical industry’s bottom line? The number one complaint to the primary health provider is common tiredness, “fatigue”.
Developing a cure for fatigue, may kill the goose that lays the golden egg. Frightening. RP
Man’s Search For Meaning
In Victor Frankl’s book entitled ‘Man’s Search For Meaning’ written in 1945 after his his survival experience in a Nazi concentration camp, he had this to say about his situation as its author:
“We dislike talking about our experiences. No explanations are needed for those who have been inside, and the others will understand neither how we felt then nor how we feel now.”
To attempt a methodical presentation of the subject is very difficult, as psychology requires a certain detachment. But does a man who makes his observations while he himself is a prisoner possess the necessary detachment? Such detachment is granted to the outsider, but he is too far removed to make statements of real value. Only the man inside knows. His judgements may not be objective; his evaluations may be out of proportion. This is inevitable. An attempt must be made to avoid personal bias, and that is the real difficulty of a book of this kind.
What do we learn from this excerpt? Personal testimony is potentially flawed, but of equal importance, so too can it be powerfully relevant. Credibility can be ascertained by statistics applied to scientific data. But, as we see from historical masterpieces such as that if Victor Frankl, who, in opposition to the deniers of the Holocaust, demonstrates that credibility can be ascertained from the sincerity of voices, however quiet or silent they may be.
Dr John L Whiting
Hi John
That looks very interesting in it’s own right, but could you spell out how that relates to the blog in simpler terms, for those of us who struggle with more philosophical approaches? I’m sure I’m missing something profound. Appreciated.
Simon
Severe ME/CFS is ignored and yet so many people have this. They are almost beyond the reach of science but they still have relevancy. ePatients often belong to this group, but they are often too sick to speak out and do so only when they are able. Some die and do not have a voice. Science fails to reach them.
Lost in translation
Agreed, and with any other disease the severely affected get the most medical and research attention, not the least. But I also think that technology and the internet make it more possible for such patients to be heard eg skyping from their beds. Charities (non-profits) and researchers need to do more to include people in these situations, both their views and their participation in research studies, doing whatever it takes to involve them.
Yes technology and internet is there, but in my opinion it only reaches the cream at the top. I can physically do little research and yet am very capable.
What are the numbers of people that have suffered for years and not have this avenue available to them ? I know, how could we know. But those people are totally isolated in their nightmare called life. Still. How will we connect them?
so accurate. You as the prisoner can be the only judge.
so many people tell you that you are getting it wrong, you have more capacity than you realise, that you don’t realise how well you are doing, look etc. They THINK they know.
I find this so difficult to handle – I don’t want sympathy, but don’t ask me, then feed me your answer. I can’t explain to anyone the effort required to do the most simplest of things, when I don’t understand how it takes me so long or so much effort either. I was once so capable.
For what it’s worth:
from the James Lind Alliance Newsletter:
British Medical Journal looking for Patient Reviewers
The British Medical Journal is building a database of patients and patient advocates to review and comment on papers. If you would like to become a Patient Reviewer please go to http://mc.manuscriptcentral.com/bmj http://mc.manuscriptcentral.com/bmj and click on “Register here” to create an account. Please complete all of the required information and answer “yes” to the patient reviewer question and you will be added to the database as a patient reviewer.
We will asking patient reviewers to comment on randomised controlled trials and seeking comments on the patient-focused aspects of the study and paper, not methodology or originality – unless they also have that expertise Patient reviewers will be asked to send in their comments within 2 weeks. This is the time frame we give to all reviewers We will not be paying patient reviewers but, in common with all BMJ reviewers (none of whom get paid), they will get a year’s free subscription to bmj.com which they can opt to pass on to someone else if they already have access to the journal. We are designing an observational study to evaluate the feasibility and impact of this Patient reviewers who are sent papers will be sent a letter explaining about peer review and what we are seeking from them In Spring 2014 we plan to put all peer reviewers comments on research papers (to which access is open) on line so that the whole archive will be freely available to all.