UK forum members - please help - I'm feeling defeated

[Bob]

I've been ill for about 6 or 7 years now, and for the past 3 to 4 years I've been doing my little bit to campaign for a better deal for ME patients, while watching so many other individuals and organisations in our community do an immense amount of work campaigning for our community. We've had MP's, members of the House of Lords, patient groups and organisations, scientists and charities speak up for us.

And then the latest UK research funding figures came out for 2009/10, and I realised that the progress we have made can only be illustrated by walking on a treadmill that's going in the opposite direction faster than we are walking.

I'm feeling really defeated at the moment, in terms of making any progress with UK government policy, research and services for ME.
And then to know that the LP research study on children is being carried out right now, as we continue to protest, with unknown damage being done to the children, makes me very sad.

The only thing that gives me some reason to carry on being politically active is to think where we might have been if the ME community had been doing nothing... In which case Wessely may well have got his way entirely.

I apologise to everyone for being so negative and for feeling so defeated, but I think I'm being realistic in pointing out that we seem to have achieved nothing!
It was the latest MRC funding figures that got to me, along with the ongoing LP study on children. Together, they have both made me feel that our community is very disenfranchised right now, and politically very impotent.

If anyone wants to give me a moral boost here, and tell me I'm wrong, then you'd be very welcome. Maybe I'm missing something.

I'm very tempted to do nothing, forget it all, and wait for the XMRV truth to unfold.

I think the UK ME community needs to have a big discussion about where we are, where we are heading, what we want, where we want to be heading, and how we can go about getting there. And I think we need to combine our resources and our efforts to get to where we want to be. The UK ME community seems to be very fragmented and uncoordinated.

I think the UK ME community needs to come together, combine its resources and efforts, coordinate its actions, and work as a whole. It's probably impossible to achieve this, but the way we are working right now, seems to be almost pointless. Apologies again for being so negative and defeatist, but the evidence is in the research funding figures, and the fact that services for ME are still solely based on CBT, and are not improving.

I'd like to make a list of politically active UK forums and UK patient organisations that I could send my ideas to, about coordinating our efforts.

Does anyone know of any politically oriented forums in the UK where I might make these suggestions, or is work already being carried out in the UK to coordinate the efforts of the ME community? If so, does anyone know who is involved?

Generally, I'm feeling frustrated and defeated and I think our community is politically impotent... So any feedback on this would be welcome.

 

[Esther12]

I have to admit that I share a lot of your pessimism.

If XMRV doesn't work out I think that there's a real chance that things in the UK will be worse than ever.

The big positive I see is that younger GP's seem to be much more morally and philosophically serious than the generation before them. There are still a lot of rubbish ones coming through, but I think that there has been a shift in medical attitudes, largely as a reflection of changing social attitudes. They feel like they have more of a responsibility to be honest with patients, to be cautious about the claims they make and to be sceptical of their own sense of superiority. We've still got a long way to go here, but I think it's an area where we're moving in the right direction.

Another positive thing about XMRV is that it's reminded everyone that they don't know much about CFS. No-one tried to debunk the WPI's PCR slides with 'evidence' in support of the biopsychosocial model. Even if it doesn't work out, I think that's been really helpful for us.

It's not as much of a positive as we'd like I'm afraid.

 

[justy]

Hi Bob, i really hear what you are saying. I have sent some letters etc when asked but otherwise i sit in my house all day alone, not knowing what to do to make it better in the U.K.

I dont know of anyone coordianting and i would like to be a part of that (illness allowing) Maybe we have such a diferent system and attitude here that it is so hard to change. Even on other UK M.E forums there is heated disagreement re the psychological basis!!!???? of M.E, which has left me feeling really down and alone in recent days.

Sorry if i,m not being more upbeat, i wish i could be. I live in Wales where we dont even have an M.E service or specialist, even if i wanted to follow the NICE guidelines and a completely hopeless GP practice who have completely abandodned me and my family. I do not know what to do to change this, but am willing to try.
Not the upbeat message you where hoping for, but ive been pretty beaten down by the system so far. Just wanting to say i agree and i am willing to throw my cap in the ring.

 

[ukxmrv]

Hi Bob,

I don't know if co-ordinating work is going to be the answer. I'm just tossing some ideas out here and I really hope that they help you. There are a lot of patients out there doing incredible work and they already have projects. I can think of half a dozen things being done that rarely get mentioned on these groups. Not many UK activists post here and some rarely post on the internet as they try to concentrate on their work.

The problem you have with co-ordinating is that someone (or a group) would need to find all these people and then agree a framework of projects to work on. That would be a huge job and I can't see it happening. Just the energy needed to find all the people, assess their projects and then argue on what they should be doing would be very hard.

I think that you have done a great job of being involved in UK ME politics. The reason you may be so down is that you don't know all the work that is going on that isn't being talked about here and is discussed amoung groups of activists in private or in small closed groups.

My own opinion is that there is a lot of wasted effort by new campaigners. People jump onto projects that have little chance of success or ones that I consider low priority. Obviously that's just an opinion and the people involved would probably disagree - that's fine with me - at least they are doing something.

There are also a few "show ponies" around in the UK ME groups who want power, publicity and simply cannot/will not work with other patients. It would be like herding cats. We have a huge range of opinion on what we want. My experience has been that the severely affected sometimes have very different ideas on the priorities over the mildly affected. Those newly ill can think entirely differently from the very long term.

Why don't you find a group of activists that you can work with and write a potential program plan? Then present it to a few other people and work that way? Alternatively brainstorm here and come up with some ideas.

Personally my feeling that that co-ordinating efforts would be too much to ask. It's hard for a group of desperately ill people to work together. When I try to work with a group on a project there can be weeks when we are all too sick to even email.

Before XMRV one of the top things on my list of would have been a new ME group to rival AfME and the MEA. Now that seems less important whilst we work out XMRV implications. More and more, I think we will need to look outside the UK for help.

I've fought the MRC, RSM, at the APPG and everything for a long time (20 years +) and I know how bad it is. It may be that you have discovered just how bad and how powerless patients are. My experience was that I was able to come to terms with the situation and still keep campaigning.

Given all of the above, I still feel very positive and more optimistic than I have done in years. I've got my own projects that I work away on and the occasional success. There is a huge momentum at the moment but even if XMRV is shown as the cause of ME, it will still be a battle and I'm ready for it.

 

[Tuha]

I am not from U.K. but I think I understand you - in my small country with 5 mil. habitants its the same - the things have to come from outside.
I think there is another posibility. I think we could try to make pressure on European Union. If we get attention of EU authorities they will certainly make pressure on U.K. authorities - so I think EU can be the key for europeans. EU countries often take decisions together

 

[Bob]

Thanks for the feedback everyone...

I am feeling very optimistic about the unfolding developments in the USA right now, and about the XMRV research in the USA, and I believe that XMRV is going to be very relevent for us all...

But the MRC funding figures for 2009/10, just released, really made me have a realisation about the state of progress in the UK.

Esther...
Yes, I agree that there are long-term positives, and I agree that some health service attitudes have changed, even since I became ill a few years ago. There seems to be more ME awareness by GP's and local health services... There has been some progress.

justy...
I am so sorry to hear how you are feeling so alone at the moment. I think I know exactly what you mean, as I had nowhere to turn in my first two years when my doctor just wouldn't take an interest in me. I felt really isolated and emotionally fragile. I've found local forums and groups to be totally invaluable for me. The online contact that I made with local people really transformed my situation. Are there no local support groups in your area?
Luckily, I was also able to change my doctor to a more sympathetic doctor, although she still couldn't offer me any help, but at least she was kind and sympathetic, and was honest with me. It was really helpful to be listened to and acknowledged.
If I find a forum that is more politically harmonious, then I'll let you know.
Have you joined any helpful UK forums?

ukxmrv...
Thanks for your interesting thoughts and your helpful suggestions.
I agree with you about the need for a new patient group to rival AfME and MEA.
I think you are right to say that I am going through a transitional moment, from optimist to realist! I think it takes time to get a full perspective on the political landscape, and to put it into the context of the historic situation.
Like you, I am feeling optimistic, in a global sense, when taking the USA situation, and XMRV research into account.
I totally understand where you are coming from with regards to "herding cats"... I did say, in my original post, that it would probably be "impossible" to coordinate the fragmented ME community.
I know what an immense amount of work people and organisations put into campaigning... I am in contact with a few different groups... But my point is that even though all this immense amount of hard work is being carried out by so many different people, over so many years, it seems evident, from the MRC figures, that very little progress is being made... The health services for ME patients are not being developed (although, admittedly, there were no specialist services when I became ill, so this is some progress, if you consider CBT and GET to be helpful), and the MRC research funding figures for ME are the worst on record to-date, if we ignore the 'zero' years from the MRC's statistics. So although you are right to point out all the hard work being carried out, right now, it feels to me that we are moving backwards, not forwards, and the immense amount of work being carried out by so many people has been fruitless. This is why I am feeling a bit defeated and deflated right now. It's not the work that's being done that I'm feeling down about, but it's the evident lack of results.
I agree with what you say about the difficulty of coordination because of the diversity of our community, and that people want to do their own projects...
But I think that just one coordinated campaign letter, sent from every UK ME patient and organisation, to the same minister, on the same subject, might just get as good a result as all the campaigning that has been done so far.
And a series of campaign letters, on the same subject, from all UK activists to the same minister, might really get him/her to sit up and take notice, just as the students have managed to coordinate and focus their protests against the student funding proposals.
There seems to be the beginnings of some interesting coordination in the USA at the moment, such as the ME/CFS Worldwide Patient Alliance.
Anyway, thanks for your thoughts umxmrv... Like you, I'm just tossing ideas out here as well... And exploring possibilities.

Tuha...
Yes, I imagine that you don't get many resources for ME in such a small country. (Although, it can't really be much less than our government gave to ME research in 2009/10!)
I'm afraid that I don't hold much hope for the European route, as I imagine that our individual voices would not be heard there. But I don't have any experience of the EU parliament... So maybe it would be more fruitful than I imagine.
Have you got any experience of getting positive results from EU MP's?

Thanks again everyone, for all the feedback.

 

[Wayne]

Hi Bob,

Sorry to hear you're feeling discouraged. Just want to mention I've appreciated yours, MEAgenda's, and others' efforts in try to stop the LP experiments on children; a very noble cause.

A little of my own personal philosophy: In the scheme of things, everything we do matters. Though the results of our efforts may not always be readily apparent, they create effects nonetheless. Perhaps part of the trick in doing any kind of advocacy is to be prepared when results aren't immediately forthcoming. I've read many stories of some of the biggest breakthroughs in people's lives occurring right after it feels like all is lost.

I wish I had a bit more energy to say more, but I just don't have it tonight. Just want you to know though how much I've been appreciating some of your efforts, and of others who do advocacy work. You're all trying to make a difference; I fell confident these efforts will eventually pay dividends in some form or another.

Regards, Wayne

 

[Wildcat]

Trying to stop the Lightning Trial may be a noble cause but its one in which the systematic disempowerment of patients and carers, and seeping aside of all valid concerns is especially apparent. And the charities should have spoken out much louder and much earlier.

As for the charities fighting for us - one charity (AYME) blatantly supports the Lightning Trial, another one obliquely supports it (AFME). And whilst the MEA did eventually make a public statement condemning the LP Trial, at present the MEA is sitting on the fence about the preposterous situation that Ed Staffords walk up the Amazon raising money for MEA for ME bioresearch at the same time as Ed promoting Phil Parkers NLP business. Any benefits from the funds raised towards bioresearch from the Amazon could be totally outweighed by the greater credibility and wide publicity given to Phil Parker by his association with Ed Stafford.

 

[Wildcat]

correction typo from post above:
"systematic disempowerment of patients and carers, and SWeeping aside of all valid concerns is especially apparent."

 

[jace]

Hi Bob,
sorry to hear you're feeling down atm - remember the rollercoaster, to go up you have to be down.

I'm finding people in the UK more and more likely to accept the XMRV message. Even Colin Barton (of Kent and Sussex ME Society) seems to be shifting his ground, and hedging his bets: Here's his recent statement

Retrovirus research - November

In October 2009 we published a statement about the research from the United States suggesting an association between a xenotropic murine-related retrovirus [XMRV] and CFS/ME.

In that study by Lombardi et al 67% of 101 CFS/ME patients were found to have XMRV compared with 3.7% of controls. The report stimulated several other studies around the world to see if the findings could be replicated. One study appeared to confirm the association between XMRV and CFS/ME but on closer inspection it is apparent that the study identified a genetically diverse group of Murine Leukaemia Virus [MLV] related viruses distinct from XMRV.

Five other studies have been published [2 from the UK, 1 from USA, 1 from Holland and 1 from China] which have found no evidence of an association between XMRV and CFS/ME in a total of 504 patients. Thus, although the initial report from the USA was interesting and potentially exciting, we still await its replication and at present we cannot recommend routine testing for XMRV in patients with CFS/ME.

Sussex & Kent ME/CFS Society
www.measussex.org.uk

And my reply:

I have copied Colin's statement above for clarity, and below this you will find a piece I wrote recently, which while being designed to be included with my family christmas cards this year, gives a fair picture of the state of play re ME/CFS and XMRV at present. You will note, I back my statements with references, fully cited. There are also a couple of useful links for further research.

Ah dear Colin, when will he open his mind and take the time to really understand what's going on here? Or doesn't he want to? I see this latest piece at least accepts that he may have to shift his position regarding XMRV and ME. There is evidence of this with many of the XMRV deniers.

There are many things wrong with his statement, one of which is the impression he gives of the number of positive studies finding XMRV - there are twelve, if I recall rightly. At the bottom of this email I have attached a few documents, and one of them is a pdf from the National Institute of Health, USA, It's called BWG XMRV .pdf, and gives a list of the XMRV studies to date, and whether they were positive or negative.

Colin refers here to his previous statement, authored by Murphy, that I was handed by my doctor last November. That to is full of holes, and I responded to my doctor at the time. Both documents are attached.

I also attach the additional supporting documents to the Lo/Alter NIH/FDA study, published last August. That's the "One study appeared to confirm..." and it is referenced at the bottom of my WPI appeal that's copied under Colin's piece. Harvey Alter and Shyh-Ching Lo, lead scientist of the study, both stated publicly (I have it saved somewhere and it may be reiterated in the document attached) that their findings did confirm the October 09 Science study by the WPI, the Cleveland Clinic and the National Cancer Institute.

Alter and Lo found fragments of a Murine Leukemia retrovirus, (MuLV) polytropic in habit (ie able to infect many species but not mice) which were (as I recall) 95% similar to XMRV. There is less difference between the MuLV's of Alter and Lo and the XMRV of the Science study than there is between the various strains of HIV1.

Colin still owes me sight of his accounts - it's nearly a year since I first requested them.

The advice supported by the NHS and Colin and Simon Wessely can have tragic consequences: I attach (this is the last one, promise) a transcript of a radio interview with Criona Wilson, the mother of Sophia Mirza, who died of ME (an autopsy proved it) aged 36. The sooner we move on to clinical trials of anti retrovirals (ARV's) for XMRV positive patients, the sooner we will know what's true. Here's a website of a current treatment with ARV's. http://treatingxmrv.blogspot.com/2010/06/week-16-of-treating-xmrv-wpi-study.html
Whew. That got me going!

I'm not reposting the XMRV WPI appeal, that I refer to above, as it is posted elsewhere. Unfortunately, PR does not support files of the size of the Alter-Lo further information or the UK trash-the-WPI that Colin was partially responsible for and refers to above. If you want to see them, pm me with an email addy - or I might split the files and add them when I have the strength.

We've had the Blood Ban Demo, and Bart's Birthday Party demo, both of which made small waves, and gave those who took part new heart and new contacts in real time. It's great to meet your online friends, and find that they are just as nice as you thought.

UK based Invest in ME continue to do sterling work, with their support of people like Justine Roache, with their annual conference, and hard-hitting advocacy pieces: their piece on the NICE guidelines is well worth reading;

Bob, we are in the same town. I'll pm you my phone number, in case you fancy a chat. The times really are a'changing, IMHO.

 

[ukxmrv]

Bob,

Thanks for the reply. That was very kind of you when so down.

When I got ME back in the 80's the medical care and attitudes I faced were far better than today, so I have seen in my lifetime the slip back that has occurred. I don't have access to any NHS medical professionals who understand the disease but in the 80's I had access to NHS and private doctors who were happy to try experimental things. I lived through the change from ME being treated as a physical disease to a psychological one and saw the NHS services changed for the worse. The NHS today can offer me nothing meaningful compared to what I had then.

My opinion would be that a campaign around a letter to a Minister would do nothing. I have had the chance to question Ministers (albeit Labour ones of course) at the APPG and have a plastic tub full of correspondence. I've already started on the new ones.

The corruption is right through the NHS, DWP and the medical profession and no Minister is going to tackle this.

We have in the past done some extraordinary things - have a look at the petition in 2002 that raised over 16,000 signatures and was presented to the MRC.

http://www.rime.me.uk/Petition_1.htm

It had no effect at all. I do feel that a letter to a Minister even if it attracted the same numbers, will do nothing at all.

The change will come from XMRV but it will be a long, slow battle. People cannot be complacement and expect it all to happen by magic. The WPI (and other allies) need our support. In the end it may be clinical trials in the USA that will make the difference in the UK. In the end we may find that private treatment in the UK leds the way for an eventual NHS treatment.

In the meantime we need to keep ourselves sane. For me, that means fighting, campaigning and getting all the facts together for what may be a huge, new court case.

People are looking at the European options already. We tried the Human Rights angle in the UK but have not been able to find any lawyers to act for us (and this has been tried for a long time - so no easy answers to this one please!). We have tried Amnesty and all the obvious things of course. No one in the UK will help us.

What some people are looking at is the disabled rights in the EU and Worldwide and putting together plans.

What you are describing is common in new activists when they discover that the system is rotton, that there is no justice and the majority ME patients are powerless to make change in the short/medium term. People get frustrated, burned out, disillusioned and withdraw.

I think that if we keep protesting (as per Barts, DOH) this story will be picked up by the media here. We already are putting together the framework for history here with these strong images. We are working on reaching people with ME who can do things but up to now haven't. New networks are being set up that weren't there before. This is an exciting time of change.

This is a hard and a long battle. In the future we will win and lose skirmishes. There will be a push forward and then attacks back. I'm here for the war, not an occasional battle.

 

[Bob]

Thanks so much to you all for taking the time to respond, and for all the really thoughtful, interesting and helpful feedback...
There's a really interesting mix of thoughts and perspectives... and I feel like my perspective has been renewed after reading all your replies...

I'm not feeling any more confident about progress within the UK government (actually, maybe even less confident after reading all the feedback!), but your solidarity, and your own experiences, have really helped me to to gain a bit more perspective and to feel a bit more confident and upbeat, generally speaking... Thanks so much...

It's easy to get caught up in everything sometimes, and to forget to take a bit of time out!
It's good to take a step back from it all sometimes, and you've all helped me to do that.

A big big thank you!

Bob

 

[Mark]

I'm so sorry to hear you feeling despondent Bob. You've been doing some really great work here in the last few months, maybe you got a bit burnt out from it. I suppose we all go through these ups and downs - I know I do. From one minute, thinking the case is so solid and compelling it can't fail, to the next minute, seeing it fail and despairing that the situation is just hopeless.

All I can say is that it's very important that we all carry on. What's that quote? Change happens very, very slowly...and all at once. I always think of the fall of the Berlin wall at such times, and the end of apartheid, and the way in which those changes happened suddenly, almost without warning, but as the result of decades of pressure from millions of people. This seems to be the normal way of things, so it's fairly likely to turn out the same way for us, in the end.

Of course, at the moment, everything does hinge on XMRV. If the XMRV results are confirmed (next week?!) then nothing else will matter much - that will have to be addressed and it will have to bring big changes. If XMRV were to somehow fall apart...well...we would just have to carry on. In that situation, we have still galvanised a lot of support and established that "a virus" is likely to be involved in ME, so we would still have a lot to build on, going forward.

Some interesting suggestions have been made in this thread and I'll comment on some of them and add some of my own...

- Action at the European level does make a lot of sense, it's good to know that's going on.

- I do feel this same need that's been expressed, for some co-ordination and communication amongst ME campaigners. There are quite a wide range of UK campaigners represented here on PR, and I'd like to see that situation extended. Forthcoming developments on the forum in the new year will hopefully make it more practical for a UK group to emerge. Perhaps we should set up a UK Campaigning group here, now? The groups feature isn't great, but it could provide a focus for us to gather together. It's high time we did that, actually: I think there are a lot of people who want to see something different, something more robust, and who want to gather together to achieve that, so I hope there is something coming, along those lines...

- Similar discussions are happening in the US, regarding pooling resources and communicating more effectively. So I think it's true more widely than just the UK, that the ME world is fragmented, lots of little groups, all doing great stuff, but lots of people starting to want to co-ordinate better. Both in the US and in the UK, the fundamental problem is that the major charities are failing miserably to present a strong public front and an opportunity for patients to rally together and campaign for change. That gap is being filled by ever more radical grassroots campaigning, but I think you're absolutely right that there is need for something new, to co-ordinate that activity. In my comments on the CAA thread, and elsewhere, I've tried to argue for a loose 'federation' of ME action groups, that tolerates significant differences of approach, but where we come together behind things we can all support. I think that applies here in the UK as well, although there are significant differences. Perhaps the biggest need is for a sustained, 'moderate' campaign for research funding, which everybody can get behind.

- One thing I think we should be gearing up for well in advance is May 12, International ME/CFS and Fibromyalgia Awareness Day. That is an opportunity to gather in London, and for actions across the UK, and to get some real attention. Again, I think it's a major problem that the major charities are failing to provide that focus, and I personally intend to be doing a lot more in the new year to pursue some of these issues. A lot of us are at the point of wondering what kinds of Direct Action are going to be necessary, down the line, and anybody who wants to avoid those sort of scenarios really desperately needs to start thinking about how to consolidate a significant moderate movement that's visibly campaigning for change. So I expect to be doing a lot around that in the early part of 2011. There is lots more to come, I feel...I reckon we are only just getting started at the moment...

- I've written a lot about it before, and will write more in the future, but I'll mention it again: I think one of the key things we need to do is get an understanding of who our enemies are, what their agenda is, and then to take the battle to them directly. Shine a light on the activities of the sceptics and pseudosceptics; their links to psychiatry, big pharma, and the insurance industry; their flawed and unpopular philosophy; and their underhand tactics and dirty tricks. With the battles over Codex Alimentarius to come, these issues are only going to get sharper, and I think we would all do well to read Martin J. Walker and get an understanding of how information is controlled in the UK through the Science Media Centre. Perhaps if we situated ourselves more accurately within the wider scheme of things, and lined up better with those who share a common enemy, we could achieve more. Reading these two might help...
http://www.satori-5.co.uk/downloads/dlf_168.pdf
http://www.scribd.com/doc/8401751/C...n-Goldacre-Quackbusting-and-Corporate-Science

I find myself struggling to find a positive note to end on though. I share your frustration, and I'll add to it a large dose of bitterness and anger. I keep having this feeling that this just can't go on like this much longer, that something has to give, and I keep re-dedicating myself to believing that change is going to come, one day, however hard that can be to believe. I think we are doing something really positive here, with Phoenix Rising, and I know there are a lot of exciting and positive developments happening behind the scenes that should bear fruit next year. We keep ourselves going with the hope of XMRV at the moment, of course, and in a way the way that is dragging on is putting everyone on hold to some extent. But at the end of the day, I suppose I just keep going because I feel I have to. I remind myself that all campaigns throughout history have faced the same blank walls of cynicism and indifference, and that all campaigners have had to sing quietly to themselves "We shall overcome some day..." - most especially at times when they didn't really believe it.

I don't know...like everyone else I started writing this hoping to send out some good vibes and I found that I just can't do anything else but agree with Bob's sense of hopelessness, echoed by others here on this thread. We all feel the same things, clearly, so it would be dishonest to pretend otherwise. But...we carry on...so I hope you'll continue to do so Bob, we all need all the help we can get...and just like Wayne said, I feel it does all count for something, in the end.

 

[Bob]

Hi Mark,
Thanks very much for being so supportive...

I'm so sorry to hear you feeling despondent Bob. You've been doing some really great work here in the last few months, maybe you got a bit burnt out from it. I suppose we all go through these ups and downs - I know I do. From one minute, thinking the case is so solid and compelling it can't fail, to the next minute, seeing it fail and despairing that the situation is just hopeless.

All I can say is that it's very important that we all carry on. What's that quote? Change happens very, very slowly...and all at once. I always think of the fall of the Berlin wall at such times, and the end of apartheid, and the way in which those changes happened suddenly, almost without warning, but as the result of decades of pressure from millions of people. This seems to be the normal way of things, so it's fairly likely to turn out the same way for us, in the end.

Thanks Mark, I'm actually feeling a lot more positive now, thanks to everyone's replies.
I took a step back from everything this week, and got some perspective on the whole situation.

Of course, at the moment, everything does hinge on XMRV. If the XMRV results are confirmed (next week?!) then nothing else will matter much - that will have to be addressed and it will have to bring big changes. If XMRV were to somehow fall apart...well...we would just have to carry on. In that situation, we have still galvanised a lot of support and established that "a virus" is likely to be involved in ME, so we would still have a lot to build on, going forward.

Yes, I agree with you... I'm looking forwards to the Blood Working Group announcement this week... It could be a very significant one.

- I do feel this same need that's been expressed, for some co-ordination and communication amongst ME campaigners. There are quite a wide range of UK campaigners represented here on PR, and I'd like to see that situation extended. Forthcoming developments on the forum in the new year will hopefully make it more practical for a UK group to emerge. Perhaps we should set up a UK Campaigning group here, now? The groups feature isn't great, but it could provide a focus for us to gather together. It's high time we did that, actually: I think there are a lot of people who want to see something different, something more robust, and who want to gather together to achieve that, so I hope there is something coming, along those lines...

Now, this could be a useful idea... Do you think we should have a UK-specific campaign section?
And, if so, should it be a members only section?
I don't like to post my advocacy/campaign letters and responses, on a public forum for various reasons. It might be nice to use the forum to formulate ideas and cooperate with creating letters etc, in private.
I don't know what others think about that idea?

I agree... This sort of forum brings such a wide range of UK campaigners together...
And I still think that some coordinated efforts between UK campaigners would be useful,
Although i agree with ukmmrv that to bring everyone together would be too much like herding cats.

In my comments on the CAA thread, and elsewhere, I've tried to argue for a loose 'federation' of ME action groups, that tolerates significant differences of approach, but where we come together behind things we can all support. I think that applies here in the UK as well, although there are significant differences. Perhaps the biggest need is for a sustained, 'moderate' campaign for research funding, which everybody can get behind.

Yes, I like that idea very much...
Definitely something to give a lot of thought to... Maybe it's something we could work on together.
If we could get lots of disparate UK campaign groups to sign up to one small specific letter-writing project, then it might make a difference.

- One thing I think we should be gearing up for well in advance is May 12, International ME/CFS and Fibromyalgia Awareness Day. That is an opportunity to gather in London, and for actions across the UK, and to get some real attention. Again, I think it's a major problem that the major charities are failing to provide that focus, and I personally intend to be doing a lot more in the new year to pursue some of these issues. A lot of us are at the point of wondering what kinds of Direct Action are going to be necessary, down the line, and anybody who wants to avoid those sort of scenarios really desperately needs to start thinking about how to consolidate a significant moderate movement that's visibly campaigning for change. So I expect to be doing a lot around that in the early part of 2011. There is lots more to come, I feel...I reckon we are only just getting started at the moment...

Some interesting thoughts there Mark...
I've heard about the two London protests and it sounds like they have been very effective in catching the attention of the local professional staff.
Maybe these protests will become bigger and more regular in 2011, due to their success.
I really admire the protesters.

- I've written a lot about it before, and will write more in the future, but I'll mention it again: I think one of the key things we need to do is get an understanding of who our enemies are, what their agenda is, and then to take the battle to them directly. Shine a light on the activities of the sceptics and pseudosceptics; their links to psychiatry, big pharma, and the insurance industry; their flawed and unpopular philosophy; and their underhand tactics and dirty tricks.

Yes, we definitely have common enemies, and that's where we should direct our efforts, if we were to get some sort of collaboration going.
Like you said earlier, it would probably be best to focus our efforts on funding for research, and it would also be useful to get Psychiatrists, like Wessely, removed from any positions of influence such as posts that advise government on issues about ME policy and research.

I find myself struggling to find a positive note to end on though. I share your frustration, and I'll add to it a large dose of bitterness and anger. I keep having this feeling that this just can't go on like this much longer, that something has to give, and I keep re-dedicating myself to believing that change is going to come, one day, however hard that can be to believe. I think we are doing something really positive here, with Phoenix Rising, and I know there are a lot of exciting and positive developments happening behind the scenes that should bear fruit next year. We keep ourselves going with the hope of XMRV at the moment, of course, and in a way the way that is dragging on is putting everyone on hold to some extent. But at the end of the day, I suppose I just keep going because I feel I have to. I remind myself that all campaigns throughout history have faced the same blank walls of cynicism and indifference, and that all campaigners have had to sing quietly to themselves "We shall overcome some day..." - most especially at times when they didn't really believe it.

Thanks Mark, for your thoughtfulness...
You make really interesting comparisons to other campaigns throughout history...
It's interesting to make that comparison, as I haven't ever done that... It's useful to draw some inspiration from history.

Now I feel like I need to give you some positive feedback, now that you are struggling to find a positive note...
I guess, like you say, we can focus our hopes on the XMRV research, and all the research that is building momentum in the USA now.

Personally, since the WPI announced the UK XMRV study preliminary results, I've been totally convinced that XMRV will be the answer for almost all of us. Up until that point, I was optimistic but not confident. Now I am almost totally confident about XMRV. This was backed up by Cort saying that he has tested XMRV positive, as Cort had slow-onset ME, and I think he has a slightly different pattern of disease to what some people consider classic ME to have (i.e. slow onset, and also, Cort complains more of pain than of brain fog.)
So if XMRV is being found in people with varying symptoms, then I think that the argument that ME is a heterogeneous 'syndrome' with different subsets/cohorts, and not a single disease, has been blown out of the water...

And the WPI's UK study were self-selected patients from the forums... They weren't specially selected for the study by researchers... It was just us lot getting tested.
So I really am convinced about XMRV now, after carefully studying all the developments. And, personally, I have confidence that this is not going to be swept under the carpet in the USA... I really believe that they are taking it seriously.

I don't know...like everyone else I started writing this hoping to send out some good vibes and I found that I just can't do anything else but agree with Bob's sense of hopelessness, echoed by others here on this thread. We all feel the same things, clearly, so it would be dishonest to pretend otherwise. But...we carry on...so I hope you'll continue to do so Bob, we all need all the help we can get...and just like Wayne said, I feel it does all count for something, in the end.

Sorry to make you focus on the negatives Mark! But you've really helped me, and you've had some very positive and encouraging ideas.
Interestingly, it's other people's honest and realistic thoughts about this that have really helped me...
The sense of solidarity really picked my up when i was down. I didn't really need positive encouragement... Just a sense of solidarity.
It was so nice to get support from everyone, when everyone is experiencing exactly the same sort of ups and downs as I am.

I just needed to take a step back from it all...
I think the UK situation is pretty bleak right now...
But luckily, I have a lot of confidence in the USA situation...
So I can carry on doing what I do in the UK because, like everyone has said, every little bit makes a difference...
But I can focus my optimism and hope on the USA.
Basically, if I don't have expectations of the UK, then I can't be disappointed or hurt.

But all our work makes a difference, and maybe the new coalition government will make some changes when they've had time to settle in. The LibDems had a very helpful opposition policy on ME, which we need to hold them to account on... But again, that's a lot of work that I think we need to collaborate on... A few letters from me is not going to make any difference. I've already written two letters about it to non-LibDems, and had negative responses. Also, there are now sympathetic people in the Dept of Health, such as Lord Howe. Willets has told the MRC to respond to Hoopers' enormous complaint about the MRC, and that is progress, because Hooper had hit a brick wall with the last government.

I wish I could remember the inspirational story that I'm thinking of...
I think it was from one of Cort's blogs...
It was the story of a very small group of campaigners who stood outside the White House in the snow, holding placards...
It was terrible weather and they left the protest feeling dejected and low...

It turned out that someone saw the small group and was struck by their determined actions in such horrible weather...
And it really did make a difference, although the protesters were not to know they had made a difference until many years later.

I'll have to dig that story out.

 

[Bob]

I wish I could remember the inspirational story that I'm thinking of...

Ah, I've found it...

I found this article very inspiring... it's about the effectiveness of protesting and campaigning...

Protest Works. Just Look at the proof.

http://www.independent.co.uk/opinio...est-works-just-look-at-the-proof-2119310.html


Here's the bit that I was referring to:

And protest can have an invisible ripple-effect that lasts for generations. A small group of women from Iowa lost their sons early in the Vietnam war, and they decided to set up an organization of mothers opposing the assault on the country. They called a protest of all mothers of serving soldiers outside the White House – and six turned up in the snow. Even though later in the war they became nationally important voices, they always remembered that protest as an embarrassment and a humiliation.

Until, that is, one day in the 1990s, one of them read the autobiography of Benjamin Spock, the much-loved and trusted celebrity doctor, who was the Oprah of his day. When he came out against the war in 1968, it was a major turning point in American public opinion. And he explained why he did it. One day, he had been called to a meeting at the White House to be told how well the war in Vietnam was going, and he saw six women standing in the snow with placards, alone, chanting. It troubled his conscience and his dreams for years. If these women were brave enough to protest, he asked himself, why aren’t I? It was because of them that he could eventually find the courage to take his stand – and that in turn changed the minds of millions, and ended the war sooner. An event that they thought was a humiliation actually turned the course of history.

http://www.independent.co.uk/opinio...est-works-just-look-at-the-proof-2119310.html

 

[Mark]

Now, this could be a useful idea... Do you think we should have a UK-specific campaign section? And, if so, should it be a members only section?
I don't like to post my advocacy/campaign letters and responses, on a public forum for various reasons. It might be nice to use the forum to formulate ideas and cooperate with creating letters etc, in private.
I don't know what others think about that idea?

I think this idea is somewhat overdue, it was suggested a while back but we got distracted. So I'm going to set one up, members-only as Bob suggests because I agree with those concerns. Watch this space...

Yes, I like that idea very much...
Definitely something to give a lot of thought to... Maybe it's something we could work on together.
If we could get lots of disparate UK campaign groups to sign up to one small specific letter-writing project, then it might make a difference.

I agree with that too, as a first objective for the group, to come up with some campaign that can command widespread support. As my proposal: I think the top issue to highlight is the lack of biomedical research funding in the UK and I think the approach they took in the US, of an advertising campaign, is the best way to achieve that, that hasn't been tried, but others will have other ideas I'm sure - in any case the idea of a single-purpose campaign that can command widespread support - working out what we all agree on - is the way forward.

I've heard about the two London protests and it sounds like they have been very effective in catching the attention of the local professional staff.
Maybe these protests will become bigger and more regular in 2011, due to their success.
I really admire the protesters.

I went down to the XMRV demo but I was thrown off for about a week afterwards and never got round to posting about it on the thread. One thing I can say for sure, is that it was just fantastic to meet up with people, and the spirit was just fantastic: I get a boost from thinking back on that day. I am up for some more of that, no doubt about it! Even a small number of people can make a big impact. I also think we should be thinking in terms of national days of action where people can demonstrate in their local area, because travel is so difficult for us of course. But we can discuss all that in the group...

Like you said earlier, it would probably be best to focus our efforts on funding for research, and it would also be useful to get Psychiatrists, like Wessely, removed from any positions of influence such as posts that advise government on issues about ME policy and research.

That's a good summing up of a core agenda as I see it. Going after the psychs would perhaps not be everyone's choice, there are ME groups with a more...nuanced position on that, but there's certainly a large and broad movement of people that could agree a form of words on that issue. Another one for further discussion...

You make really interesting comparisons to other campaigns throughout history...
It's interesting to make that comparison, as I haven't ever done that... It's useful to draw some inspiration from history.

It's funny that, I don't know quite when it was that I started to see our campaign alongside all those others, but somewhere along the line in the last year it just clicked with me that this is the reality. I take great hope from that: the knowledge of the justice of our cause, and the knowledge that history teaches us that such struggles do win out in the end, and after years of hard work by unsung heroes who must have felt at times that they weren't making any making progress. I do put us very much alongside all those other campaigns, and it's a source of inspiration. We shall overcome: it's just a matter of time...sadly, something which is continuing to run out for most of us, but we can take hope at least that change will come in the end, and by knowing we are part of something bigger than our own individual suffering. We can fight for each other, not just for ourselves: that's what keeps me going...

Interestingly, it's other people's honest and realistic thoughts about this that have really helped me...
The sense of solidarity really picked my up when i was down. I didn't really need positive encouragement... Just a sense of solidarity.
It was so nice to get support from everyone, when everyone is experiencing exactly the same sort of ups and downs as I am.

I've felt just the same about this thread. It makes such a difference to know you aren't alone with all this. I tend to focus on the positive these days and post less when I'm feeling down than I used to do. But I suppose it's best if we're just honest with each other about how we're feeling. This community can be so supportive when people are struggling - it's pretty inspiring.

Your story was spot on Bob, and I have seen the same thing often enough in my own life to know that what you're describing with that story is the rule, not the exception. Often I've been told of things people have done as a result of something I did years ago that I'd completely forgotten about and thought was a waste of time. Everything we do has meaning, and it all affects the people who we communicate with, in ways we can't predict, even though we don't perceive that effect most of the time. We just need to remind ourselves of that, from time to time, and keep plugging away...that dam's going to burst, one day...and what a day that will be!

 

[Mark]

UK Campaign Group

OK: I've gone ahead and created a new group, with a few discussions to get us started. The group name and description is just the way I see things, so it's over to our UK members to suggest alternatives.

As I've set it up, anyone (PR members) can join the group, and we can discuss there (on threads visible to group members only) how we're going to organise the group and what we want to do. Totally open playing field as far as I'm concerned...

From the 'Forum' link at the top, select 'Community > Groups' and you should see the UK Campaign Group there.

Onward and upward!