Correspondence with Scottish Government
Following the news on the Rituximab Study I decided to lobby the Scottish Parliament and my own MP to establish whether or not that news gives them concern regarding the way ME/CFS is dealt with within the UK.
The SNP are it seems keen to put clear water between them and the UK government as a whole and I hoped given initiatives like the one being discussed in this thread that they may lead in the respect of a UK based Rituximab study of any kind. Some of my mails may appear terse but Ive found when dealing with Government on a previous occasion that they tend to ignore you and do their taking, if there is any, to the press and unfortunately that doesnt let you know ahead of time whether theyre working on something or not, so I tend to get pushy.
At this time I would encourage anyone to lobby their own parliament and representatives, if you want change, keep pushing. Ill continue to update this thread with any advance in my correspondence.
27/10/2011 To Michael Matheson (MSP) Minister for Public Health
ME/CFS and recent Rituximab study in Norway
Dear Sir,
I open this dialogue today in the hope of gaining an understanding of both your own position, and that of the Scottish Government with regards to those patients who have been given a diagnosis of ME/CFS under the NHS.
You are perhaps aware that within the UK, while a quiet nod is given toward the WHO classification of this disease as an Acute Neurological Condition we also insist on a dual listing of the condition under psychology, in complete contradiction to those dictates. It therefore comes as no surprise that the only available treatments are CBT and GET, not that you commonly get access to either, with no ongoing investment in biological research.
Being within this illness classification I find myself like the quiet majority of the estimated 250,000 UK sufferers, being left to deal with this quite life changing illness on my own, partly due to the prospect of being seen by a doubting practitioner and partly due to the inevitable wringing of hands by doctors who despite themselves are unable to offer any help.
Indeed the statement an estimated 250,000 sufferers outlines the uphill struggle and lack of mainstream care we experience when no one even cares enough to keep count. This estimate has been touted certainly for the last ten years.
I have chosen today to break my silence however due to the recent publication of a Norwegian Rituximub study. Rituximub is a drug commonly used in the treatment of certain cancers and acute arthritis, the drug I understand to be an immuo-modulator which depletes a particular immune response mechanism known as a B-cell. This phase 1 double blind placebo study was conducted by two Norwegian oncologists (Mella / Fluge) who had noted several patients with Lymphoma and co-morbid ME/CFS who related an improvement in their ME/CFS symptoms following treatment with this particular drug.
The results were significant enough for further funding to be awarded and recruitment is now under way for a larger Phase 2 study.
The results also prompted one Bjrn Guldvog, Deputy Director General of the Norwegian Directorate of Health to make the following statement to the Directorate -
I think that we have not cared for people with ME to a great enough extent. I think it is correct to say that we have not established proper health care services for these people, and I regret that.
I would ask if the UKs position is any different.
If you are not familiar with this very recent news I would invite you to use the link below to read it at your leisure.
http://www.newscientist.com/article/dn21065-chronic-fatigue-syndrome-eased-by-cancer-drug.html
I would however presume as Scottish Health Minister that you are more likely familiar with the work done last year by Dundee University. With funding from a private charity, DU studied a group of child ME/CFS sufferers, and while unable to identify any particular active virus they found clear evidence of an active viral immune response within almost all of the child sufferers studied.
http://www.bbc.co.uk/news/uk-scotland-tayside-central-11204884
I have no interest in getting into a discussion on whether there is a viral cause or an immune disorder, what seems clear from following the wider literature, and this latest study in particular is that there is a significant subset within the ME/CFS diagnosis group who have one or more physical causes at their root of their illness, and that for this subset using CBT is both insulting and a waste of time while GET is a detriment to their health (for reasons I can expand upon should you wish).
Should this prove to be the case, what will Scotland and the UKs excuse be for the dereliction in their duty of care toward these patients, not for years but for decades. It seems to me that we have one of two problems, one, that we fail to distinguish between the physically ill and the mentally ill in both the UK and Scotland, and so are derelict in our care for patients with a physical illness. Or secondly that we are closed off to the mounting evidence for a biological root to this disease, holding instead a deep prejudice toward such notions and therefore appear backward and uncaring on the world stage.
What I would like from you is that you read up on this subject and give me your reaction in particular to the two studies I have noted above, Then to tell me where your conclusions leave you and the Government in terms of your responsibility to provide care.
For myself I would tell you that this is a devastating illness, affecting a large number of Scots across all sections of our society. It also has an unknown but significant impact on the economy and an even greater cost at the personal level with many being bed ridden for years.
I would hope that this Government take a lead, accept that there is significant reason to doubt the practices of GET / CBT for a significant subset of sufferers and invest both in terms of advancing the Norwegian studies and the attitudes of those providing care for those diagnosed with this illness.
As a Government you have my vote because you are not shackled by the history of the other parties nor it appears as yet compromised by vested interests, you take pride in placing Scotland at the cutting edge of innovation in both industry and medicine. With this I invite you to study the facts surrounding bio-medical research for this illness in the hope that through you Scotland can lead the rest of the UK both in research and care.
Regards,
31/10/2011 Standard Reply of acknowledgement
I am writing to acknowledge your recent letter to Michael Matheson regarding ME/CFS and
recent Rituximub study in Norway. A reply will be sent to you as soon as possible.
Yours sincerely
3/11/2011 To Scottish Ministers (web address offered under Nicola Sturgeon, Scottish Health Ministers, Page)
I forward this mail previously sent to Michael Matheson, I appreciate this only concerns the side issues of health and appropriate care provision, nothing in themselves when compared to Independence or minimum pricing for alcohol its true, but still, surely one of those tiresome side issues that must be dealt with between those greater services to the tax payer.
So, any chance I can get a response. If not, please forward details of where and when the Health Secretary conducts her constituency surgeries.
Regards,
NO REPLY RECEIVED
8/11/2011 To Scottish Ministers and Michael Matheson
Like David Cameron and his big question I still find myself waiting for any meaningful reply to my question, denied research, denied care and now denied any access to Parliament.
It seems it is true, that the only real agenda of this Government is their own selfish self perpetuation.
Time to raise this with the opposition and see if I can get any traction there it seems, if this wall of silence and unaccountability is Scotlands future I wont be voting for it again.
NO REPLY RECEIVED
At this point I visited my own area M.P. Michael McMahon (MSP Labour) at his surgery where I discussed the same topics, I have yet to hear back but as an opposition M.P. he was happy to pursue the question. Again, I will post any updates.
9/11/2011 To Nicola Sturgeon (Scottish Health Minister) to her own address which does not invite health questions, but rather Scottish National Party enquiries.
On the subject of the SNP's Policy on Accountability
Your site indicates that questions regarding health should be directed via the Scottish Ministers mail address, I have mailed this address twice and Michael Mathesons own address once without any reply which in any way indicates my question is being considered let alone answered.
So, may I ask you with regards to the SNP, exactly what is your policy with regards to the electorate, do you feel you are accountable and if so please outline how you connect and service that accountability so that I can access it. Otherwise please just confirm that it is as it looks, and that you consider our only part in your story is to provide power position and remuneration via the ballot box.
Alternately of course you can simply not reply and prove to me that theres not one of you to better another.
Regards,
9/11/2011 From Nicola Sturgeon
Dear -
I am not sure why you haven't had a response yet but if you re-send your query direct to this address, I will make sure it gets acted upon.
Best wishes
Nicola
Sent from my iPhone
10/11/2011 - Original Mail resent to Nicola Sturgeon with the following appended comment
This is a very fast moving subject and I would add that since sending this mail to Mr. Matheson on the 27th October there has been an announcement that the Norwegian Government will go ahead with a phase 3 trial as well as the phase 2, I have yet to ascertain if this is in conjunction with the phase 2 trial or to immediately follow it.
I hope you can take on board the significance of what is suggested by the results of Drs Mella and Fluge.
Best regards,
NO REPLY FROM ANY PARTY as at 16/10/2011
16/10/2011 T0 Nicola Sturgeon
Hi Nicola,
Another week and still no reply to my enquiry, not sure what the difficulty is after all Im simply asking to know the Governments position on the illness Im told I have. I for my part sit here with almost every joint and several large muscle groups burning to the degree Im distracted and unable to maintain the same position for more than a few seconds. Yet here I am, still earning and still paying my taxes.
The following is as good an example as any of the duplicity and ignorance with which the UK Government deals with those it has branded as CFS/ME, having read it ask yourself by whom and by what methods those neurological signs will be determined in order to have the case passed forward to a qualified medical professional.
if the position of the SNP is no better that that of the UK Government, and it is the case you have nothing new to offer, nothing new to add then at least have the courtesy and courage to admit it.
(As posted on the ME Associations site that day)
Parliamentary Question, WHO classification and Atos medical assessments, 14 November 2011
The Countess of Mar tabled a Written Question asking the Government why, in view of the fact that Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) is classified by the World Health Organisations mandatory International Categorisation of Diseases as a neurological disease, and that the Governments contract with Atos Healthcare requires a qualified doctor to assess employment and support allowance claimants for CFS/ME, the Department for Work and Pensions stated, in response to a Freedom of Information request of 23 March 2011, that any healthcare professional can undertake such assessments.
In a Written Answer on 14 November 2011, Lord Freud (Minister for Welfare Reform at the Department for Work and Pensions), replied:
The Governments contract with Atos Healthcare requires that doctors are used to assess claimants with conditions that are likely to have complex central nervous system examination findings.
The majority of claimants with CFS/ME do not exhibit such signs and therefore CFS/ME is not on the list of conditions that are required to be assessed by a doctor. However, if a claimant with CFS/ME has neurological signs, they will be passed to a healthcare professional with the requisite expertise.
Regards,
This mail elicited the following exchange with the Cabinet Secretary for Health, I have omitted the ladys name as she is a paid employee and not an elected representative
Thank you for your e-mail addressed to Ms Sturgeon, Deputy First Minister and Cabinet Secretary for Health, Wellbeing and Cities Strategy.
I can confirm that your correspondence is receiving attention. A full response will be issued to you directly in due course.
Kindest regards,
Myself: Thank you for taking the time to send me a reply which neither answers my question, convinces me of your sincerity nor puts any limit of time upon your giving me the answer I seek. This seems to be the way with the SNP and at this moment in time I feel quite embarrassed at ever thinking it would be different let alone having lent my support in the past.
If you cannot by return of this mail set a deadline by which I will receive an answer to the question I posted first a month back then I will assume that you are simply dismissing me and hoping I will go away. This you will find I will, however I will also attempt to make the avoidance of addressing my issues as embarrassing as I can for both the minister and the SNP. To that end I have already spoken with my own Labour MP and will now progress to outline your response to date, or rather lack of such on any and all internet sites I think may influence your voters.
Yours,
Cab Sec: I apologise if you have not had a response until now. I can assure you that your letter is now under attention and you will receive a reply from us addressing all the issues you raised. We are currently working on a 21 day deadline on all mail received which we strive to achieve. If you have not had a response by 7th December 2011, please contact me.
Kindest Regards,
Myself: Im quite sure Ill do no such thing, by 12th December youll have failed miserably and Ill have been motivated in other directions, surely if you were sincere in addressing such mails within 21 days you would make this a pledge within your automated replies rather than the somewhat dismissive in due course you supply. You would also in respect of my inquiry be telling me I could expect a reply by Friday
Michael Matheson on Rituximab study - 27/10/11
Scottish Ministers on Rituximab- 03/11/11
Scottish Ministers and Michael Matheson on Rituximab- 08/11/11
Nicola Sturgeon on Governmental accountability - 09/11/11
Nicola Sturgeon on Rituximab as per her request - 10/11/11
Nicola Sturgeon on Rituximab - 16/11/11
Or do you have to get annoyed before the 21 day count starts?
Cab Sec: With regards to your email below, I have now consulted with our officials who are in possession of your email and are looking into this matter. A full response will be sent to you within the next few days.
I would like to take this opportunity to apologise again if you feel that this matter has not been given its due attention. I hope that this response will assure you that we are taking this matter very seriously and it is being treated as a priority.
Kindest Regards,
Myself: Thank you, very much appreciated.
But thanks for acknowledging Canada.
