1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
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Brain Cells Making us Sick? The microglia connection in ME/CFS & Fibromyalgia
Simon McGrath looks at theories that microglia, the brain's immune cells, could trigger and perpetuate the symptoms of ME/CFS and fibromyalgia.
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Time for a Patient Revolution

Discussion in 'Phoenix Rising Articles' started by Mark, Jul 10, 2013.

  1. Phoenix Rising Team

    Phoenix Rising Team

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  2. Sasha

    Sasha Fine, thank you

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    Fascinating, Simon - great article. Lots to think about there and plenty of opportunities seem to be in the pipeline for the ME/CFS community. As you say, we've seen big successes in fundraising with MEandYou and Ryan Prior's film project. We're also winning most online voting contests we enter and there's plenty more we could be doing. Anyone who still thinks their small donation or their mouse-click or any small action that they could take doesn't matter because no-one else will do it hasn't been paying attention to how things have changed - and how fast they're still changing. It's all to play for.
    Nielk, taniaaust1 and Simon like this.
  3. Simon

    Simon

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    Thanks, Sasha

    As I wrote the blog I was amazed myself how much seems to be changing at the moment and how many opportunities are coming up. I think there will be a gulf between some of the fine words from the UK government, the BMJ etc, and reality on the ground, but it's going to be easier to advocate for change when the principle that patients need to be centre-stage has been conceded.

    And in the nearly 2 decades I've been ill there have never been such signs of radical change at the top. Interesting times. Or maybe just blind optimism from me :).
    Sasha, sianrecovery and Valentijn like this.
  4. Jarod

    Jarod Senior Member

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    planet earth
    Simon likes this.
  5. Sasha

    Sasha Fine, thank you

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    Nothing like being able to quote somebody back at themselves, though. :cool:
    peggy-sue, Simon and Valentijn like this.
  6. Sasha

    Sasha Fine, thank you

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    Superb TED Talk by e-patient Dave, there, by the way - just watched it and he got a well-deserved standing ovation at the end.
  7. taniaaust1

    taniaaust1 Senior Member

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    I think people are only just starting to understand the huge advantages there is in an internet age thou I think things could still be taken far further. The things I see being done using internet eg using competitions to gain funding, to use crowdfunding, making the knowledge known of the poor studies throu support sites, I see as just a start to things to come.

    In this day and age with the use of the internet, we should be able to set up patient ME/CFS research studie and then make the patient research known (just like it comes now to our attention the info on the bad studies being down out there.. If someone does a good study of 1000-2000 ME/CFS patients even if its an unoffical study.. I believe it will gain attention throu our sites etc. The new found knowledge from such studies would get out).

    I personally dont think there is a major necessarity to be needing to be going throu medical journals anymore when there are large ME/CFS interacting communities all over the place and patients who can set up unoffical studies and be doing better studies then currently being done in the medical journals!!! We have all became great analysers of bad studies, they stand out like sore thumbs and Im sick of seeing bad studies done,, even many of the better studies arent comparing the different subgroups in whatever they are studying. I think we need to be running our own studies (always comparing the subgroups while we are at it ..hence being research which wont go out of date when ME/CFS definitions change as it would then still be relevent) and we could do them far more cheaply too if we worked together and used the test results patients are getting back now.

    Im very interested in setting up an unoffical study to help answer questions we have about ME/CFS which arent currently being researched. If anyone else is interested in being involved in something like this (I do have an easy thing to research in ME/CFS which hasnt been researched yet in mind to do with the methylation cycle) but maybe someone else has other easy to research things we could focus on if we formed a patient research group), please message me. Im looking for others who'd be serious interested in setting up a patient ME/CFS research group to research various things in ME/CFS (looking at things in both ME and CFS subgroups).

    If you'd be a willing volunteer as a ME/CFS study guinea pig (only kidding thou I guess we could also do things like test out supplements or medications people get from their doctors which they want to trial anyway and not just look at peoples test results which is along the lines of what Im thinking about researching and analysing first being simple and without possible bad issues)... please contact me to with your email and I'll start making up a list of those who would be willing volunteers to be subjects in ME/CFS research studies done by a patient group once set up ( (No need to report me for a rule breach as Ive spoken to Mark and thou PR isnt involved at all at what I want to set up, he said its ok to try to do this off my own back).

    It is my belief that with the power of the internet we (those who have ME/CFS) as a large patient group, could do something like this which would help us all and have it succede. Maybe it would even make todays ME/CFS research community turn to us to find out how to better run ME/CFS studies! (without all the study disputes which go on now) once it came known the patients themselves were doing very well run studies. We could set a new ME/CFS research standard.
  8. Firestormm

    Firestormm Senior Member

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    Shame the articles being referred to are behind paywalls. Surely such topics should be open-access in the spirit of 'patient power' :)
    MeSci, Sean and Simon like this.
  9. Simon

    Simon

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    Now that is a revolutionary idea. And it makes great sense to use test results patients already have.

    However, I wouldn't underestimate just how difficult it is to do good research. There are a thousand different ways to mess up a study, and only a few ways to get it right. Just getting the data in the right format is hard enough, and doing robust statistical analysis is fiendishly difficult.

    To a large extent, something like OMI's OpenMedNet is providing the perfect platform to collect the information you want and to oganise experiments. A couple of things occur to me that might be easier to pull off, and achieve the same, are:
    • Bring together patients to agree priority research questions that need answering, and maybe suggesting experiments that would provide the answers
    • Approach OMI about using OpenMedNet to tackle said experiments. I don't know if they would be willing to play ball, but it could be interesting to ask. They may even be able to suggest researchers who would be willing to collaborate with patients on studies.
    There are certainly plenty of bad studies out there, and probably most in the scientific community would agree that the current system doesn't work very well. I do think it's important to have an independent view of any study write-up before it's published as that spots errors at least (if not all of them).

    On top of improving the current patchy peer-review system, people like James Coyne have argued that Post-publication review/critiques are enormously helpful - because it extends scrutiny to a much wider group of people. He is campaigning against the practices of limiting critiques to just a few hundred words, or of authors blocking any critiques of their studies. Another issue is that even if critics make good points that undermine a study, someone paying for access to the original study won't usually get access to any correspondence or critiques. This sort of thing is easy to organise through the internet and drives up standards, but there is a lot of resistance to it from authors who like to feel that once published their study becomes an unchallenged beacon of light, rather than something to be debated. Overall, I believe journals are better reformed than abandoned.
    SOC, MeSci, Tom Kindlon and 2 others like this.
  10. Esther12

    Esther12 Senior Member

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    Thanks for tying together all those different sources Simon. It does seem like lots of different sources of power are pushing a similar agenda at the moment, and one that has particular significance for CFS patients (although I don't thikn that the BMJ will want to recognise this).
    Simon and Sasha like this.
  11. Firestormm

    Firestormm Senior Member

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    Apologies Simon, but I've finally now cleared some time to properly read your article and wanted to comment a little further about our local action in relation to the GP Commissioners down here in hot and sunny Cornwall.

    Whilst the problems facing our ME Service had become apparent prior to the publication of this Bill, it certainly did serve to provide the impetus for Kernow Clinical Commissioning Group, the outgoing Primary Care Trust and indeed the Hospital Trust (who are responsible for the Service); to sit-up and take notice of what we as patients and representatives had to say.

    N.B. For anyone wishing to discover who their commissioners are. Try this if you are in England. :)

    I am a committee member of MESHcornwall. A small volunteer organisation (soon to become charity) that liaises frequently with the NHS ME Service. Professor Tony Pinching is our Patron, and it was his retirement that actually brought all the financial problems to light.

    And before any asks - I am responsible for the 'new' website information. So blame me for the fact that it isn't all perfik at the moment. I am working on it with my 'technical advisor' who is unpaid also and busy running his company at the moment. [Sigh] The 'third sector' can suck :zippit:

    Essentially, the Service was operating without any formal model and was costing far more than the amount allocated by the PCT. Generally, each new patient is allocated £X in the NHS. This however is often inadequate when dealing with a chronic condition - as I suppose we can all imagine.

    We became involved properly in 2011 and our principal concern at that time was a replacement clinician for the Professor. But we became embroiled in the controversy of funding vs. performance and it became apparent that the Service itself was under threat of closure.

    The overspend was being picked up by the Hospital Trust and they were themselves in financial deficit. So what to do? The Cornwall ME Service was very highly regarded by patients and in a 2011 Neurological Services report commissioned by CAN-DO (another group I had been assisting with and another project I helped to produce); the Service was highlighted as a 'good integrated working model' of care (page 26).

    That Report from CAN-DO actually draws on much of the 'no decision about me...' ethos of the Governments plans - although again the Bill had not been published and the Commissioners had not taken office at the time.

    So, while the Service - with Tony Pinching at it's head as Service Lead - was seen as something worth saving; it was costing more than was available and the Hospital Trust were desperate for a solution.

    Incidentally, Tony did not cost anything really. His salary and time were picked up as a part of his contract with another part of his professional role. So losing him was not a financial benefit to the Trust. It was felt as a loss all round.

    But what can you do? We are so desperate for clinicians to come onboard. We as patients could only protest the need and indeed, we still are. We have gone from Tony, and 2 GPs with special interest working part-time; to a single GPwSI and a Neurology Specialist.

    In terms of medical manpower we are down. And our remaining GP might indeed be considering his role - he has to travel from Torbay to Truro to attend clinic. The ethos extends you see to having GPs in Primary Care carrying a greater share of the 'burden' and then Secondary Care i.e. the ME Service: complementing them.

    Our Neurology Specialist I have yet to meet. It took some effort by our current Service Lead (Carol Wilson) to snag Julie's interest I think. A case of bypassing the system of advertising, and bureaucracy, and knocking on her door! Not ideal perhaps, and Julie is new to ME, but - seriously - what can you do?

    So. Once we knew that Kernow Commissioners had come on-line. We also discovered that GPs generally wanted - some quite desperately - the ME Service to continue. Had this ground-swell not been there then perhaps things might have been different.

    Point here is that we had already established the infrastructure locally. We had the networks. Alongside MESHcornwall we have Seven Community Support Groups across the county - Cornwall is very large and rural. We had CAN-DO a recently new organisation; and we had national input and awareness - principally with the ME Association. But much was done by MESHcornwall and especially by our Chairman.

    Through our Newsletter we kept our 200 members in touch with what was happening. We have formal quarterly meetings with the ME Service and the Hospital Trust decision-makers; and these meetings were increased to monthly almost throughout the 18-24 months this dragged on.

    Letters were written of course, phone calls, etc. with the Trust executives, PCT, and Commissioners; all made through our Chairman. It helped to keep things streamlined and enable relationships to be established. I was a background bod, offering support and writing crap :lol:

    We also negotiated a BBC Radio Cornwall feature. Our Chairman read the letters from patients pleading for the Service to remain open and better funded. Relating their experiences of help and support. This feature ran throughout the morning show. And believe me - almost everyone in Cornwall listens to this radio. It IS very influential.

    Our meeting with the Kernow I remember very well. I had actually reviewed the NICE Guideline with the aim of trying to impress upon them how the remaining Service was not fulfilling the expressed need. Accompanying the Guideline by the way is a rather useful 'costing template'.

    The link there is to the pdf. but there is also an Excel document that enables you to add your own population data and it will compute a cost estimate for their ideal of a 'model' service. It's extremely useful I found for comparisons - its the only one I came across.

    When it came to the meeting, there I was armed with my nicely typed - taken forever - reports and the five of us were ready to rock n' roll. Only they had overrun with - of all people - CAN-DO!! Still we got our points across succinctly - and presented the reports. I never knew if they'd read them but when I got home I followed them up with emails - damned if I was going to see all my efforts wasted!! :zippit:

    Oh there were moments of panic on the journey and we aren't out of the woods yet by any means. At one point the suggestion from the Hospital Trust was to provide a Liaison Psychiatrist to oversee our Service and the Pain Management Clinic. But we sidestepped, and dodged, and ducked and dived; and punched a few noses... you get the point :)

    Main thing was to keep talking. Keep engaged. And try to make sense and not talk with emotion. Although emotion is very useful at times - like the radio for example.

    Another aspect to all of this has been the development of the Referral Management System. Not sure if other parts of the country have similar systems for GPs to use? It is intended to streamline referrals. There is some bumf on there as you can read about ME.

    Our Service is now formally taking Moderate, Severe, and Very Severe. It is better funded than it was. The system still has flaws and these we will be hoping to address next week and at our next Liaison meeting in August. Home visits are made - I should know because I get them. The medical side has been downscaled but this might be corrected if we can recruit someone new.

    Am in danger of losing the plot now... and have written enough for everyone to turn off I suppose. One final point. In Cornwall we now have these people: Healthwatch Cornwall

    I haven't really had time to look into them very closely but they are I think another aspect of the Bill. My overriding concern with all of these changes and with the ethos is one of EFFECTIVENESS and MEASUREMENT.

    Ritto, peggy-sue, taniaaust1 and 3 others like this.
  12. Sasha

    Sasha Fine, thank you

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    Firestormm - my brain went 'pop' partway through your very interesting account there so apologies if I'm now talking rubbish - will try to reread later - but I wonder if this isn't a great case for telemedicine (another new direction that the NHS is trying to head in).

    The benefits to PWME of telemedicine would in general be huge. Who among us bedbound/housebound patients get adequate care? We desperately need the NHS to take advantage of even the phone (!) in dealing with us, rather than requiring us to visit surgeries and hospitals or do the impossible and get a housecall (difficult for GPs, impossible for specialist care).

    Can ME be a leader in this field? And led by patients? It would be a good way of emphasising to the NHS and the public in general that we are so physically disabled that we're incapable of accessing care in the normal way.
    peggy-sue, MeSci and Firestormm like this.
  13. Firestormm

    Firestormm Senior Member

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    Thanks Sasha for the 'like'. Hope it bloody makes sense. Have been editing. I always hit the return button too soon. Anyway, that's me done for the day. You have a good one :)

    Re: Tele-medicine. Yes. Carol is trialling a system for people with ME. I am struggling now but it had to do with the telephone and a black box :ninja: Something about pain management and advice and medication. I believe she said - this was last year - that it held recordings or it might have also been a 'hot-line' for people who became rather desperate for advice and couldn't get to the GP. I shall endeavor to follow-up on this. Thanks for the reminder :)
    MeSci and Sasha like this.
  14. Sasha

    Sasha Fine, thank you

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    Better to hit the return button often than not at all, I think!

    Take it easy! Sounds like you need a rest. :sleep:
    peggy-sue and Firestormm like this.
  15. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    Wow - you sure have been doing a lot! :)

    I couldn't find names for your clinicians on the MESH site. I recall seeing that a researcher on a recent article posted here was based in Devon - can't find it again or remember his name but it was a 'double' surname without a hyphen. Whom do you have?

    Not sure about this but I'm sure you will reach a lot of people who wouldn't come across the issue otherwise through that station. I don't listen to Radio Cornwall - my radio is almost permanently tuned to Radio 4, Radio 4 Extra and occasionally BBC World Service, Radio 3 and Planet Rock! I don't think my best friend listens either, nor another close friend.
  16. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    Agree 100%. I think there has been at least one trial of telemedicine in Cornwall, but only for certain conditions. With the long distances, the low car ownership and the poor public transport system it can be hard for many people in Cornwall to access health services. The volunteer driver services are overwhelmed, and those using them often claim back the cost as they are on low incomes. This must cost the NHS a fortune.

    I visited my GP recently, taking the best part of the afternoon to get there and back on the bus, just to check my blood pressure! I have my own BP monitor so it was really unnecessary and inconvenient.
  17. taniaaust1

    taniaaust1 Senior Member

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    "Now that is a revolutionary idea. And it makes great sense to use test results patients already have."

    The issue with this if one used the test results of tests the patients already had, is that it would only be accurate if patients were enrolled BEFORE they had the test done as otherwise if they knew a certain thing was being looked at, those who know already that they have this issue may be more likely to join, which would then not give accurate population rates of the issue. Hence I was thinking people would have to be enrolled before the test (which they were planning to get done anyway) was done (and then everyone who had the test, would have to be followed up both positive and negative results).

    Of cause if a large group of patients were enrolled as test participants and all their test results were looked at rather then focus on just a certain area, then one wouldnt have biases towards certain results (I guess the OMI works like that?) . If a patient group thou collected things in such a way (unless OMI allowed a patient group to access all their info which I doubt it would), it would be too hard thou for a patient group to be looking at ALL the test results at once and hence I think just a few things at the most should be focused on at a time (one cant go and try to answer all the questions at once unless one had technology at ones fingertips to be analysing everything)..

    I also think something like OMI is limited as does it ask for ALL tests the patients have had, all abnormal findings found? Ive found that data collections of things esp in the field of ME/CFS.. certain things are never asked or looked at . and if they arent, well they arent in the data base. Is OMI giving out what subgroup ME/CFS patients are, along with the data? or just data?. (thou i do think I read somewhere that OMI does look at gene stuff.. but how could a patient group or someone who wants to find out what percentage of ones with ME/CFS in certain definitions, have certain polymorphisms access the info from there?. Unless those who want questions answered can get the info from there, OMI is unfortunately useless to them.

    "OpenMedNet streamlines data collection"

    And what about data which hasnt been collected yet? (Im interested in looking at things in ME/CFS which havent been looked into yet.
  18. taniaaust1

    taniaaust1 Senior Member

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    I was just thinking.. maybe OMI would allow a patient group to work with them to collect info on certain test results and then pass them on the info so they can put out the info??? (this may be worth at least asking them about). I know they have their own set focuses but I wonder if they would allow a group of others to do the work for them on other ME/CFS things? (and take on the costs of that research).

    Im wondering if anyone has a contact email for Andreas Kogelnik? (founder/director of OMI If so, could you please pm it to me as I'd like to ask him about my idea of a patient group gathering up info on other ME/CFS research things and if that info them could be passed on to OMI. I'd like to start up a research patient group which could work with OMI
  19. Simon

    Simon

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    Thanks for explaining som much about your battles, Firestormm, think you wrote an article there! Think you deserve a medal too, both for perserverance and effectiveness (sorry, only balloons available :balloons:) . Congrats to all at MESHCornwall.

    I've highlighted what I thought were some of your key points below, but it's still a lot! So, mainly for my benefit I've summarised what struck me as key issues in all this at the end- you can let me know how i did

    Key points (I think)
    • The 'No decision about me, without me' principle helped the discussion
    • Money and budgets were hugely important but you spent a lot of time addressing this and that seems to have paid off
    • Showing how valued the service was by GPs was a very smart move
    • Tying up Cornwall's radio waves for ME was a cool
    • That liaison pyschiatry option must have been alarming - it's what happened in Leeds.
    Fantastic you have home visits. Amazingly, my consultant came out to see me at home when I was very ill but have used phone and letters since, which has worked well. I didn't even meet my new GP for 6 years until I was able to see them this spring - everything was done by phone.
    Sasha and Firestormm like this.
  20. Erik Johnson

    Erik Johnson Senior Member

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    Dr Cheney and Dr Peterson are awesome, but what happened to us in Incline Village was so unbelievable...
    that frankly, neither of them could believe it.

    There was more going on, but you had to be there to feel it.

    http://www.cfsuntied.com/toxicmold.html
    merylg likes this.

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