RiME: Notice and Letters 11/5/10

Campaigning for Research into ME (RiME):  Notice and Letters 11/5/10

Shortlink: http://wp.me/p5foE-2Sw

www.rime.me.uk

From Paul Davies

11 May 2010

Campaigning for Research into ME (RiME)

Hi,

Thanks to those who have sent good wishes re. my bout of shingles. Slow progress…

Trying to catch up on correspondence… Because of increased and increasing support for RiME it gets increasingly difficult to reply to everthing. If you have sent a letter/email recently which you feel warrants a reply, please try again.

Good Wishes, Paul rimexx@tiscali.co.uk  www.rime.me.uk

Selected Letters Oct. 2009 – April 2010

Views expressed in the letters do not necessarily reflect those of RiME.

Ref: 799 Grampian

Thank you for sending me the latest newsletter. As always, the newsletter is realistic with regard to all aspects of the ME situation. When will this change in the UK?

The leading ME charities seem to go round in never ending circles achieving very little for neurological ME patients. It is as though they are reluctant to admit that they are representing both G93.3 patients and F.48 patients at the same time. Is this because they don’t want to choose between the two groups? Is this why they still back the ludicrous CFS clinics dolling out CBT/GET? Who profits from this approach?

Worryingly these are the groups who supposedly “represent” neurological ME patients in the UK. They should truthfully state which group of patients they represent. Or perhaps it is time for a new ME Group which truly represents neurological ME patients. Perhaps an alliance between some of the already existing smaller pro-neurological ME groups? I like the idea of one “UK ME Society” representing G93.3 patients only. Sounds quite a good name too because it incorporates all sufferers the length and breadth of the UK.*

It is incredible that following the latest XMRV research results the MEA is not recommending that research scientists should adhere to the stricter Canadian Clinical Guidelines for research patient selection. This says it all. Why does the MEA wish to leave the research door wide open to include F48.8 patients?** Do they really want both G93.3 and F48.8 patients to continue to be lumped together, thus watering down research results? Don’t they want to find a diagnostic test, followed by appropriate treatment? Or do they want ME patients to remain in the Chronic Fatigue/F48.8 mire for all time? If this is the case then a new UK ME Group is sorely needed…

Ref: 804 London

Thank you for the last Newsletter. Excellent. Yes, how we do get rid of AfME + MEA? Perhaps it’s something that needs to be discussed on the internet. Would you consider putting this letter on message boards? The point is: If the vast majority don’t feel the above are acting in their interests (indeed, many feel they are acting against them in that they are not really about G93.3 ME) then let’s robustly discuss that knotty problem ‘how do we get rid of them’?

1. It’s excellent to see their respective memberships nose-diving but the trouble is, will they not be propped up by Government funding? Could we petition the Health Department asking that Section 64 funding be withdrawn?

2. I find it difficult to think of anyone now who genuinely supports them. I know a few who still get their awful rags because ‘they want to know what’s going on’. Is there a way that more people can access their information but without subscribing ie share-swaps or info. being circulated via ‘net.

3. Challenge those groups who still support them – it never ceases to annoy me when I see a Local Newsletter which says at back ‘useful addresses – AfME, MEA… ‘ Too often the wrong people get to run local groups – there seems to be so many troglodytes and blissninnies who feebly accept the status quo; sadly, too few challenge what they do re. the larger picture.

4. The obvious way to get rid of the above is for us to start a new national ME Society*. But without the backing of a wealthy philanthropist, it won’t be easy… If the philanthropist doesn’t materialise, could one have a process where ME patients pledged money as they did re. the Judicial Review. Tricky. Would people be prepared to do it without knowing exactly what the end product would be?

Food for thought…

Ref: 806 Lincs

I wish I had the energy to write a long post about my NHS experience however to summarize:

I had similar experiences as people here.
Each session of the NHS CFS group was 2 hours long, this was at least 1hr too long. It made it a 3-4hr event.
They made us sit on school class room style chair, agony.
If/when you left they blamed you for not cooperating so it didn’t go into any statistics I went to 6 out of 8 sessions. When I left half had gone already. The ones that stayed seemed to have other conditions.
It sent me into a bad relapse.
It was even suggested I leave my wife and children to avoid stress.
It was horrendous, I didn’t get to see a consultant or even a doctor.
I had my initial assessment with a nurse and the sessions were run by an OT.
No tests or specialist help just relaxation and exercises to stop my negative thinking.

Bad bad bad…

Ref: 810 Glamorgan

APPG Legacy Document… This is a deeply depressing document.

Can we get anywhere while the Group pretends its remit is ME, but acts as if it’s CFS?

Perhaps the answer is to split it into two separate Groups. Those who favour the psychiatric clinics to call themselves APPG on CFS. Those who commit themselves only to ICD-10 G93.3 ME to use the existing name, the Canadian Consensus Criteria &/or the Nightingale definition of ME, and pursue biomedical research and treatments specifically for ME and provision by the DWP appropriate to a disabling neuroimmune disease?

You deserve several medals for plugging away at this so faithfully…

Ref: 813 Norfolk

… Just want to register at this point my ongoing gratitude and continuing support for your efforts to make us heard!
and also to applaud those efforts of the other-equally beleaguered-ME sufferers at these meetings – please don’t let them silence any of you – I only wish I was well enough to attend myself; alas have now been housebound for months
But you need to continue to speak up because you are just about the only people there who are actually stating the facts and representing the true needs of ME patients. Without your voices we will all be gagged.

Lady Mar should step down in my opinion, since she seems completely unable to control her temper it follows that she is hardly a suitable person to act as Chair…

Ref: 816 Yorks

… I must congratulate you. When you first notified me about the Inquiry, the common question was “will it try to concoct a favourable report and publish it in the run up to the next election?”

I think your actions have helped ensure that did not happen. It sounds quite awful what happened to you at the last meeting. The current APPG does not appear to be fit for purpose. Let’s hope after the election, the situation will improve.

A big “THANK YOU” for your sterling efforts, which hopefully is a step towards stopping the abuse of patients, given the unsupported diagnosis of ME/CFS.

I discovered the report on 10th January; it was unacceptable the way it was presented to the APPG. It was also very discourteous that Dr Turner did not even acknowledge receipt of papers people sent in. We were not told when the hearings took place. We were not told the Interim Report had been issued….

Ref: 822 Birmingham to Parliamentary Commissioner

… I understand that you have been contacted recently by ME sufferers who attended the APPG meeting for ME held on the 2nd of December last year. I wish to add my support to their complaint.

I think it may help if I give you some background information that has given rise to unhappiness that is surfacing at meetings. Currently there is tension amongst the ME community due to the fact that they feel their illness is not being taken seriously at Westminster. Part of the blame for this stems from what sufferers see as a failure of ME charities and their supporters to adequately represent them. Because of this, some feel they have no choice but to struggle to meetings in the hopes of trying to educate politicians as to how dire their situation is. People such as I who have been ill for twenty- two years cannot make the trip to London and are extremely grateful to sufferers who do make an effort; aware that many do so at a cost to their own health. Nevertheless and regardless of their efforts, politicians still only see ME charities as being representative of all sufferers and show favourable bias towards them. Whilst recognising that meetings only have a limited time in which to conduct business it needs to be borne in mind that the APPG for ME has been in existence for just over a decade, yet not one success can be pointed at to justify its cost to the taxpayer. The equivalent of a business plan has never been put forward. Had politicians developed one it would have shown a real commitment on their part, and gone some way to show to the public what expectations they should have, and what can reasonably be achieved by a group having APPG status. As a result dissatisfaction with the APPG group has steadily grown.

At the moment it is far too easy for group politicians to portray the public as being awkward or aggressive when the group’s lack of progress is being brought to their attention, but unfortunately that is what is now happening. In my view politicians appear to feel that just showing a willingness to be involved with ME, is in itself enough for nothing other than gratitude to be shown towards them. Whilst I and many others are grateful if a politician shows an interest, there seems little point if nothing of any substance ever materialises. As you know yourself living in a democracy allows people, if unhappy, every right to say so without fear. This ought to be obvious to the politicians involved. They should also be aware that they are displaying poor judgment when they show not only an unwillingness to listen, but believe it acceptable conduct to flounce out of meetings. Their actions only feed into underlying concerns the public in general have regarding the standard of politics in the UK. Concerns that are understandable given what is being currently being said in the media.

I am also worried that – as an election is on the horizon – there may have been some manipulation of events at the last few APPG meetings, in order to try to justify the current APPG not being reformed when a new Parliament reconvenes. This would leave only ForwardME as the only ME lobby group within Westminster; a group in which it has been made quite clear to the ME community that only people acceptable to it are allowed to attend…

(Ed. copies to RiME of letters sent to Parliamentary Commissioner go into double figures).

Ref: 830 Kent

Thank you for the summary of the APPG meeting, and for standing up for ME patients. I hope it didn’t take too much of your energy, it’s appalling that they respond in the way they do. R says don’t let the xs get you down….

Thank you again for your email. Surely there will be a breakthrough in someone’s research somewhere in the world and the politicos and Wesselyites will have to eat mounds of humble pie. Won’t that be bliss!

Ref: 832 Yorks to Daily Telegraph

A letter appeared Feb. 6 entitled ‘Breaking the ME Enigma’, which says in para. 4 ‘it is time the nation started taking ME seriously’. I wish to comment on the said letter by pointing out the following:

The rank and file have been trying to get the nation to do this since 1997… Often it has been done without any support from the main groups who seem content to let things ride referring to any such attempt as counter productive, and sitting on the side lines… Some representatives from these groups have even signed the letter.

Any progress in the nation becoming aware of ME of which there are many enlightened citizens has been done by the rank and file going among them, it is a sad fact that the establishment is not as enlightened, a point which the general public have often commented on at fundraising and awareness events.

Other signatories are members of the APPG on ME, which when it was formed as a result of action taken again by the rank and file between 1997 and 1998. In eleven years the APPG has not once championed the cause of ME biomedical research, but have debated other issues and when complaints have been made at meetings have threatened to evict anyone who disagrees, as a result of this dictatorial behaviour they have been reported to the Parliamentary Commissioners for Standards….

Yes ME has needed the enigma to have been broken and resolved but this should have been done long ago, by those whom we looked to for leadership but were sadly let down…

Ref: 835 Dorset

I hope you don’t mind me emailing you but x y posted your message about the latest APPG debacle on Facebook. Firstly, thank you for all you do. I am in agreement with your comments regarding certain members of the APPG. They seem to be conducting highly irrelevant investigations into what amount to highly irrelevant NHS services. I have pointed this out to many people including CS of the MEA but there seems to be a reluctance to admit any fault….

Anyway, I understand that Des Turner is stepping down as chairperson so it could be an opportunity for some new blood in the group. My MP, Annette Brooke (Lib Dem) might be somebody to approach about this. She has shown a lot of concern towards me and my worries about the lack of research into ME. You may have seen the adjournment debate she led in parliament a few weeks ago. I was partially responsible for this although I wasn’t entirely happy with the early part of the speech (I wrote the second half!) as it was rather too complementary about our local ME clinic/support group which quite frankly are a disgrace….

Ref: 837 London

… The Internet is a powerful tool which can work to ME patients advantage, especially in terms of exposing the national ME Charities’ errant ways. Running Internet Services is not an easy job, and there can be a fine line between freedom of speech and moderation. However, if a person makes accusations which are inaccurate and unfair, then one wonders if a line has been crossed. Critical comments have been made recently about persons attending the Dec. 2 2009 APPG meeting, with words such as ‘rude’, ‘aggressive’ and ‘disruptive’ being used.

I was there that day. For the record: No ME patient acted rudely. No ME patient acted aggressively. The only rude and aggressive behaviour came from politicians. Consequently, several have complained to the Parliamentary Commissioner.

Distorted and exaggerated accounts are too readily accepted by a few Internet users, and they need to be more careful what they write.

Disruption? That is a moot point. If there was, fine with me. The way the APPG Inquiry into ME/CFS Services was set up certainly needed challenging (with only AfME and MEA being consulted re. writing of Report). Moreover, if ME patients hadn’t spoken up at the start of the meeting, I dare say they wouldn’t have been given the chance.

The whole thing stinks. Talking to friends around England, I don’t get any good reports on the clinics set up following the CMO Report; indeed, the opposite – more GET, CBT… Yet the APPG, in conjunction with AfME and MEA, has published a Report which does not accurately reflect how ME patients feel…

‘Relax, we’re winning, XMRV… ‘ I don’t subscribe to that view; it smacks of complacency, if not Micawberism. The Government in cahoots with ‘Wesselyites’ will hold out for as long as they can. Why? Money, of course. If replicated test results from ME patients show anomalies, we still have a mountain to climb.

Note the evolution of the Wesselyite argument: First, didn’t they say ME doesn’t exist? Now, are they not saying that there is a biological element but it is still largely psychosocial; treat the latter, and ME patients will improve/recover? Their studies (not about strictly defined ME) provide the Government with a cheap option which I think they will cling to for as long as possible.

So, we must challenge clinics set up following the CMO Report upon the ‘Wessely model’. Congratulations to those who had the courage to speak out on Dec. 2; they deserve our loyalty and support…

Ref: 842 Lancs

Dear Mr Turner

You are to be commended for your courage in taking the chair at any meeting concerning ME. Obviously you must have been aware previously that there is a sizeable bone of contention between certain factions of those people who are focused on progressing the interests of ME sufferers. That such a rift exists, reflects the wide variations in the severity of the condition (a variety mentioned by the Minister himself) and is a considerable factor behind such bitter disagreement.

From the minutes of the last APPG meeting it seems patently clear to me that you (and the Countess) do not acknowledge a similar act of courage to your own from ME sufferer Mr Paul Davis and some of his supporters given the severity of the condition encountered by these people. Merely attending the meeting is in itself an ordeal which prevents others with similar problems from playing any part in fighting their corner. Mr. Davis’s efforts are truly Herculean and the Chair, whatever the difficulties, must recognise this and, on all occasions, give respect, at least, to his views. Mr Davis and his supporters are fighting for their very lives and this cannot be said, with the best will in the world, in respect of the “professionals” who represent the large charities. Mr Davis does indeed carry the hopes of many sufferers of severe ME who, however, are effectively disenfranchised by the fact that government and the APPG meetings both operate from a far corner of the UK so that, given their debilitating illness, they find the time and distance to be problems which they are completely unable to endure. Let this never be forgotten.

Quite frankly, your treatment of Mr Davis was nothing less than appalling and revealed a complete lack of skill for anyone acting as Chair. You openly admit, as reported in the minutes, that AFME and MEA were the only groups consulted, a fact which needed to be brought to attention at the outset. Your “reason” for carrying out this act of impartiality being “because they are the only people who assist with the running of the Group” (APPG) is completely outrageous and does not bear thinking about. (I trust that this is not a usual Parliamentary practice). Given the widely known polarised views on ME, this impartiality is a blatant slap in the face for Mr Davis and his supporters in RIME.

To the injury supplied to Mr Davis above you then had the audacity to add insult. Your recorded stab at Mr Davis “I know you feel that you represent MILLIONS of patients” was unacceptably contemptuous. (It is, however, pertinent to state what the Minister himself said, that the number of ME sufferers is not actually verifiable, which is a comment in itself about the progress made with M.E.). To cap it all, the minutes record that, in repost to a supporter of Mr Davis that “important points” had been made by Mr Davis and his colleagues, you retorted “I have yet to hear one.” Bias, Mr Chairman? You supply any synonym you like….

Ref: 844 Kent

… I’m so sorry to hear that you’ve got shingles; really nasty. I hope it soon abates. It was a great pity that you had to miss the latest APPG meeting; I’ve been trying to get there for the past year or so, but it’s still beyond me at the moment.

Was really glad, though, to see – on ME Agenda – Chris Ellis’s excellent letter condemning the treatment you were afforded at the previous meeting, behaviour which was truly appalling and at the same time cutting to the chase on what the APPG should really be about. Will they take notice I wonder…

Not a lot of hope out there for us at the moment with the conflicting XMRV test results floating about. Have just finished reading Hillary Johnson’s Osler’s Web… fascinating and illuminating, bringing home how serendipitously ME (or CFS as it was in the States) became ‘associated’ with psychological problems, and in such a cynical way.

Have just read the APPG Governance procedures, which seem to indicate that the Chairman is always right…

Please don’t respond, you’ll have enough on your plate coping with yet another painful and debilitating symptom; just wanted to get in touch to give you my support. Will try to take some action on the Report.

Ref: 846 Surrey

To RiME,

Letter to Lady Mar… Don’t let the Blissninnies and PollyAnnas get you down.

Dear Lady Mar,

I have read the full transcript of this meeting (APPG on ME Dec. 2 2009).

Myself and others associated with ME congratulate Paul Davis RiME on the points he made at the beginning of the meeting. He was quite right to ask who was consulted regarding the writing of the Report on ME/CFS Service Provision, and to raise concerns in that respect.

These were valid and legitimate points.

I don’t know anyone, incidentally, who is attending the clinics set up following the CMO Report 2002.

Can I ask, therefore, why you asked for him to be evicted? …

Ref: 851 Leader of Manchester Group

Charles. Yes it is a funny old world. The whole scenario reminds me of the fable of the Emperor’s new clothes. A case of collective denial. I don’t know where you’re getting your feedback from maybe you could share it with us.

There is not one single children’s NHS clinic that doesn’t treat ME as a psychosocial illness. The APPG report doesn’t see this as a problem. It ‘accidentally’ omits the advice of the TYMES Trust and repeatedly quotes Esther Crawley, the staunch Wessely School specialist. If Des Turner gets his wish and CFS/ME children’s clinics are funded throughout the UK we will almost definitely see more of the same. The number of children being forced into harmful/abusive psychosocial treatments will dramatically increase. Why on earth would people with ME want to thank Des Turner for that?

The MEA’s repeated excuse of supposed ‘feedback’ to try and justify their atrocious position on the clinics is beginning to grate.

The MEA justify their backing of the clinic (which almost entirely consist of psychosocial treatments) by quoting feedback of those who most probably have psychological chronic fatigue.

*Ed: The ME Association has already registered “The ME Society” with the Charity Commission as an alternative name to its operating name.

**Ed: If the author is referring to ICD-10 Neurasthenia, the ICD-10 code is F48.0, not F48.8.

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