My last update delved into politics. It was a move away from my usual blogging topics.
This update is asking for less politics. Especially in relation to the millions of us who are ill and caught up in political storms.
I am utterly pissed off with the politics and sniping that accompanies my illness. Yesterday, the Medical Research Council (an independent UK body that decides which research proposals will receive Government funding) made the almost unheard of decision to ring-fence £1.5m for the biomedical research priorities that the working party had identified. Note - biomedical... not Cognitive Behavioural Therapy or Graded Exercise Therapy!
The announcement was met with, on the most part, scorn by the 'community'. £1.5m isn't nearly enough - this is an empty token gesture - blah blah. Now, I know the sum involved isn't huge. But for fuck sake people, it's an almost unique scenario. Never before have I heard of the MRC giving such special treatment to specific research proposals. Change has to start somewhere and isn't always massive initially.
Then we have the two camps still bickering about whether XMRV is THE key or whether it's a load of bunkum and the fight should all be about separating M.E. from CFS. For ordinary idiots like me, I read one side of the argument and decide it makes sense. Then I read the opposing side and change my mind.
I'm ill. All I can know for sure is that I'm ill. I want to be made better. I want to be cured. In the absence of that, I want to exist in as positive an environment as possible and to provide support free from politics for others who are ill.
Why couldn't I have got a disease that wasn't so bloody political?
True very true.....told you there's a lot of nastiness out there ! Its not that we should be grateful for crumbs but it is nice to look at things positively and some people just like a good moan
ReplyDeleteCouldn't agree more Barry, I hate the fanatical way people will moan & dissect everything.
ReplyDeleteI won't go on forums to waste energy arguing about such things as the name, which comedian mentioned M.E in the wrong way, etc or to pick holes in every little thing. I for one am not qualified to say what is right or wrong. And M.E is exhausting enough without arguements between ourselves. So many conflicting views, so much whinging, all negative & gets us nowhere. Everyone of course entitled to their own opinions & we all have our own strong dislikes of certain aspects, eg, the psychobabble or mistreatment of patients gets on my goat more than anything. But what is the point spending hours arguing with someone over something you have no control of anyway? Let's spend that time doing something constructive if you feel that strongly about it.
I will stay skeptical, cautious about the "good intentions" of the funding but not knocking it either. Let's not shoot people down who are trying to change things, let's give them the benefit of the doubt.
As for xmrv we cannot afford to put all of our eggs in one basket, there will be no god like worship of xmrv here!
And as forest gump would say "that's all I've got to say about that" xxx
i find it difficult to know what to make of this. i do welcome it and hope that it marks a change in direction in this country but i feel cynical and wonder if the purpose was to silence criticism of the mrc. next weeks parliamentary adjournment debate about the need for more biomedical research into me/cfs will be a much smoother ride for the health care services minister.
ReplyDeletei doubt that many sufferers will be celebrating until biomedical research receives at least as much money as has already been wasted on quackery like get and cbt. as far as i'm concerned i'll reserve judgement until i see further evidence to prove this is the beginning of a change in direction, rather than a one off.
a couple of years ago i read the cost of me/cfs to the uk economy was £6.4 billion per year. how much is it worth spending to fix a problem this big?
I think the idea that this money is "ring-fenced" is a con. We'll have to wait a couple of years to find out - time and money that could or should, in my opinion, be used to fund an XMRV replication study. £1.5M - and none of it to do with underpinning/aetiology. The timing of this is so suspect with Holgate due to give this "good news" to the APPG on ME on 16th Feb. We shouldn't be giving anyone the benefit of the doubt after 25 years+ of obfuscation, denial, propaganda, misappropriation of funds, suffering and death etc. £1.5M does not placate me in the slightest, symbolically or otherwise. It is evidence of nothing. I bet the "sleep disorder" research will suggest measures one should take re sleep hygeine or some such. This progress may be a personal victory for Shepherd/ MEA but it isn't any kind of victory for the wider community. There are acres of publications on the "ring fenced" issues amongst the 5,000 papers already published. It is old ground that at best will be revisited. 20 years on from de Freitas' initial retroviral finding and we still aren't investigating XMRV, a novel retrovirus found in the vast majority of ME/CFS folk tested. I'm not putting all my eggs in one basket re XMRV, I just want this line of research thoroughly explored. The extent to which resources have been spent to persuade us and the medical community that XMRV is a dead end furthers my belief that this is an avenue that should be persued, at all costs. We have to get involved in the politics, otherwise we're gonna be sitting here in 20 years time (if we live that long) still observing the merry-go-round. We should not feel comforted by this announcement and we need our MPs to back our assertion that this is in no way good enough and a blatant distraction from the work that needs to be done to deal with the emergence of a new retrovirus that effects everyone, regardless of whether one has ME.
ReplyDeleteThe name (change) issue is important as is the issue of criteria used for diagnosis/ studies as both have a direct impact on which people/ illnesses are included in "ME/CFS" studies - for example, one of the priority areas highlighted by the MRC is to be "fatigue". Will this study concern fatigue within a tightly defined ME/CFS population (eg Canadian Consensus Criteria) or a looser, eg Oxford or "London" criteria, which will include folk with various illnesses not necessarily including ANY folk with ME/CFS? These results, based on the study of fatigue among folk with disparate medical entities, will then be considered genuine ME/CFS research. This is the way they have operated for decades - obfuscation - and this MRC money will doubtless be used to obfuscate further. Why would they change their tactics when it has clearly worked so well for so long?
."I am utterly pissed off with the politics and sniping that accompanies my illness."...Ditto to infinity..♥ to you Barry
ReplyDeletePreach it. I'm not sick, but I do some advocacy for ME. My goal is to educate healthy people. It's hard to do that when so much misinformation is pumped into the atmosphere. I can charge ahead with my straightforward message about what ME is and why people should care, but then they might read about the "contamination" studies and decide I'm deluded. I can address the politics and explain why they're wrong, but that's far too much information for people who don't feel they need to care.
ReplyDeleteI hate having the most politicized disease on the planet too. However, if we (as a patient population) aren't aware of the political realities that have denied us support and research dollars for so long, we will keep making the same mistakes, keep falling for the same garbage in new packages, and not realize when really important research is actively being buried. It sucks to sift through all the noise, but it would sucks worse to remain sick because we did not raise our voices about something that had a chance to make us better, or even get us well.
ReplyDeleteI'm not sure I understand the concern some have about putting all one's eggs in the XMRV basket.. the real issue is that right now quality XMRV-CFS research needs tons of funding (esp the WPI, who are very politically being shut out of funding here in the U.S.). Although we should remain as objective as any good scientist would about its role in ME/CFS, we should still focus all our advocacy efforts on thoroughly investigating what is undeniably the best lead we have EVER had into a potential cause or co-cause of this charming disease. If it turns out somehow to be a completely false lead, we move on. But this is an unprecedented finding in all the years of biomedical research on the disease (no other pathogen/potential cause has ever been so strongly associated to our disease, by so many complementary methods) and deserves unprecedented focus of advocacy and, unfortunately, requires very careful appraisal of the politics.
Quite a stir being caused by this update. I am happy to publish comments that are by named individuals and are respectful and rational. I will not publish anonymous comments or abusive comments. I should also probably publish the rants though as it does demonstrate my point better than my post ever could.
ReplyDeleteFor all those being directed to post here by ME/CFS Forums, be advised that I am aware my blog has now appeared on your 'advocacy' list and that I am receiving a huge amount of traffic from you all rushing to 'put me right'. This 'campaign' is yet more evidence of the point I was making.
Let me be clear if I haven't already. I am NOT against advocacy. I am NOT against the WPI. I am NOT against the principles of the name change campaign. I am NOT against the separation of ME and CFS if it has pragmatic benefits for all.
What I am against is that we are taken less seriously when everything is met with cynicism. What I am against is that we make no impact whatsoever by sending 300 standards letters to an email address. What I am against is people who provide nothing positive and are so consumed by bitterness that everything is negative and a battle.
I have utter respect for the history and the suffering of those who went before us. None of that is being attacked here. Going back to the MRC announcement, what is wrong with being cautious and skeptical but either saying nothing or saying something remotely positive?
I am ill, just as those unhappy with my post are mostly ill, I presume. I maintain the right to speak out about my views on the illness and the 'community' and no amount of concerted campaign by forums to 'put me in my place' will quieten me.
Don't lose heart, Barry. And don't lose sight of beauty in the midst of the storm. There is beauty all around.
ReplyDeleteThanks gracenote :) I'm okay, really. And I will be continuing to work on things that provide everyday benefits to others. It's my view on some of the less positive aspects of the community and I can happily stand by it whilst recognising there is so much good work being done out there. Perhaps I should balance this post by making my next one on a celebration of the supportive and pragmatic work that goes on our there.
ReplyDeleteI notice Dr Deckoff-Jones, now she has accepted and clarified the WPI position, is having to field some ridiculous accusations and scorn as a result of the WPI not being able to accept insurance for treatment. This is the one organisation who are supposedly the good guys, even amongst some of the zealots.
Wake up folks. Unless you want to alienate everyone who is working on your behalf.
How bl**dy horrible and predictable and tiring (not just in an M.E. way) that you should be receiving all that 'stuff'. That's exactly what I meant when we corresponded a few months back. Some people are so far down into their own woods/forests that they can't see the trees or the light anymore. I know that, despite everything, you will cope with it all but it's a shame you have to.
ReplyDeleteBarry - I think you hit the proverbial nail on the head. I have been ill with ME/CFS for more than 2 decades now.
ReplyDeleteI have watched the polital posturing and antics here in America (and have lately been watching what is going on in the UK) and find myself getting really frustrated. And more often than not, sad.
Because my life is the one that is being forgotten.
Because my life's quality and quantity has been degrad so being housebound 90% of the time.
Because my life experience and innate understanding has been repeatedly ignored, laughed at and criticized.
Instead of those who are in a position to help us doing their jobs, they have entered into this realm that accomplish a lot of ... nothing.
And in the end, they aren't the ones who suffer the consequences of their actions. We are.
So I so get your rant. Yup. I totally get. (unfortunately).
Hope you have a nice weekend.
Barry, that was a really good blog. I agree, it is an absolute insult-to-injury to be so sick, and to have to wade through some of the muckiest politics in the medical world on top of it.
ReplyDeleteI have been pretty active in advocacy, but sometimes I have to back completely off just to preserve sanity.
Thanks for sharing!
Love your post, Barry. I am sad to report that this sort of bickering has been going on at least since I became ill 16 years ago. Personally, I am happy for any and all research, big or small - maybe because it somehow validates that this is a "real" illness, maybe because I am just tired of fighting and negativity. As you said, "I want to exist in as positive an environment as possible..." Agreed. With limited energy, and feeling "well" only part of the time, I choose to focus on enjoying what I can of Life. If I'm going to live with illness, I'd rather live in gratitude and optimism - not bitterness and anger. Just my humble opinion...stepping off the soapbox for now.
ReplyDeletereally very sad to read about hostilities being directed at someone (especially you) from within this community...united we stand, divided we fall - as far as i'm concerned.
ReplyDelete(and i have my suspicions this will only make you stronger and more stubborn and driven, with a clearer purpose anyway)
Hey Barry, Is great you are feeling positive about MRC news - and of course 1.5 million is better than a poke in the eye with a sharp stick! - but I tend to agree with Sarah Lawry's points above, she has articulated my views almost entirely.
ReplyDeleteBut I am not here to shoot you down, honestly ;)
Re. XMRV, I have no idea how it relates to our illness, but I too believe it has to be studied exhaustively if only to be dismissed.
I also worry when I read about sleep hygiene studies...
But we cannot ignore that the ME fight is now political and really has been for many years now. We have to fight back, we cannot acquiesce, be grateful for crumbs...
Look at Egypt! - this is what happens when people say, No more to the dictatorship.
I have likened the M.E fight to the Middle East before and I firmly hold to this metaphor. Those in power do as they wish if they are not challenged and cause untold suffering; meanwhile, there are factions everywhere, in fighting between ordinary citizens abounds, extremism can take hold. But in the end the truth will win, it has to.
Hang in there Barry... ;0)
ReplyDeleteLike barry has said i don't want anyone here to think I am against the wpi, (quite the opposite),the importance of M.E being used instead of CFS, etc. I am simply sick of negative debates & arguements instead of constructive advocacy.
ReplyDeleteSarah you know I am totally with you on putting pressure on MPs as well as trying to raise funds for the Wpi for research. For those of us who haven't been as sick as long, the "positivity" we felt of the MRC announcement is perhaps because we haven't faced 20+ yrs being sick & had our hopes raised then destroyed as much. I am still extremely skeptical & suspicious and perhaps a little more naive. But incredibly grateful to all who continue to open my eyes to the politics behind this illness.
I understand the reasoning behind the doubts, the mistrust, I totally get it. I'm just exhausted of sniping, which only causes stress to those already sick. It is not directed at anyone who carries out advocacy & awareness.
Re xmrv, I simply meant to not put all our eggs in one basket as a way of protecting the community if xmrv is not associated with M.E. The disappointment of shattered hopes will be a huge blow if it turns out to be a dead end. I thoroughly support that it should be fully investigated.
Like khaly says sometimes you get to the point where you need to back away from all the politics to preserve your own sanity. It's the only way I can keep what's left of mine.
Barry - disgusted that your getting grief from forums, that is exactly the kind of nonsense none of us need & yes it highlights exactly what your post is saying. Xxx
Upon reflection, I think this has been a useful topic to discuss. I have tried to publish as broad a selection of comments as I can and hopefully I have shown that I am happy to publish comments from those who disagree. Otherwise, there could be no debate. I also think it has been a useful means of allowing others to come out and say they feel the same way as I do though, and I welcome that also.
ReplyDeleteI still feel the point is being missed by those who have said I am trying to ignore the politics or discredit those who fight the political fight. Aside from the ones who have thoughtfully called a fellow sufferer an 'idiot' (decided not to publish those), I hope most readers have at least been given pause to consider what I am trying to say.
If my message isn't clear then it is either down to my own lack of proper expression or the strong emotions around the subject that can sometimes cloud judgement. Assuming the former, I'm going to have one final attempt at distilling what I personally think.
We must engage in politics. I agree. However, we must engage in politics much smarter than we currently do. It is my view that the public relations attached to most of the campaign work going on is either non-existent or counter-productive. As someone who was been on the other side of the fence, working for large companies, I know the lack of positive impact attached to receiving 3000 standard emails demanding action on something. That impact is either benign or negative. It either is ignored or produces more hostility and division. Conversely, receiving 10 heart-felt individual emails can have much more impact.
Politics, whether we like it or not, involves tactical approaches, it involves a certain amount of 'playing the game' and getting the right people on side. This is never achieved by hostility and blanket negativity. I'm seeing, elsewhere, Martin Luther King and Malcolm X being referred to. If it is felt that a similar approach will win the fight for us here and now, I personally disagree.
Advocacy work is important. I have never said otherwise. Being skeptical and keeping decision makers accountable is also important. I have never said otherwise. But I look around me at some of the ongoing campaigns and I fail to see any positive outcomes resulting from them. I'm sorry if that's a hard truth for people engaged in them. I appreciate their intentions are probably good. That doesn't change the fact some of this blanket negativity and these bombardment tactics are doing more harm than good.
My own contribution to the 'community' is to aim to produce literature that can guide, comfort and support those amongst us who do not have the time or energy to research widely, who do not have the confidence to demand certain tests or treatments from their doctors, who do not currently feel as if they are part of a supportive network.
This does not mean I ignore the politics or I ignore the mistreatment of patients that stretches back decades. I do not. It means I choose to put my mind and energies into something that will help someone next week or next month. I applaud all who think they will change the political landscape but I recognise that there is also a need to do something more immediate and more tangible.
As I have said, my personal view is that a number of the methods being used to make our voices heard are counter-productive. I am content to hold this view until I see evidence to he contrary and I am content to be disagreed with.