Thank You Ian Swales MP

Posted 9 February 2011 by rachelcreative
Categories: cfs, letter, m.e., MP, politics

A thank you email I sent to Ian Swales MP in response to the Parliamentary debate on ME 2nd February 2011 as well as his EDM 778 on ME Research

9 February 2011

Dear Mr Swales

Although I am not one of your consituents I just wanted to write to thank you for your comments in the debate on ME/CFS on 2nd February 2011 as well as for EDM 778 on ME Research.

I was diagnosed with ME/CFS 4 years ago but have been ill with the condition for at least 6 years. Although I would now describe myself as a moderate sufferer I am still housebound, unable to work, unable to attend to basic self care needs and a long way from living what would be considered a normal productive life.

It took nearly 18 months of seeing GP’s in my practice before one gave the ME/CFS diagnosis which allowed me to address the downward spiralling of my health so that I could rest and begin to pace.  Knowing the nature of the illness I had allowed me to make small gains in improvement but by that time I had lost my job leaving my husband to have to juggle caring for me and working full time. I know first hand the prejudice of many GP’s against ME/CFS.  Their ignorance or arrogance devastated my health and my life.

I have managed to access medication privately from 2009 which has helped me regain some function and relieve some symptoms so long as I continue to carefully pace and manage my condition.  This private medication came as a result of my own efforts and research. Although GP’s can prescribe this medication off licence for ME/CFS my practice would not allow it.

My GP is helpful and supportive but not proactive and not able to offer me much in the ways of NHS treatment other than attempting to manage symptoms and to offer CBT and GET (two management strategies I decline after bad experiences with local physio’s not understanding my illness and already having CBT skills I use day to day).

Whilst the Minister for Health Care Services, Paul Burstow, stated in the February 2nd debate that the NICE guidelines are merely guidelines, in practice they limit the options that GP’s may either be able or willing to explore.

The issues you raised in the debate are so important to me. Research, biomedical research, I think has to be the key to moving forward both in establishing diagnosis and treatments.  There are already clinical markers that when considered together could diagnose ME but the NHS seems to want a single, inexpensive and uncomplicated test for what is a complex condition.

Being a ME/CFS patient I am well aware of the splintered and often angry responses to debate about ME/CFS and that for many it makes them wary of speaking up on behalf of sufferers.  So I wanted to thank you for your efforts and to know they do not go unnoticed or unappreciated.

Where once I worked and was an upstanding citizen, now I sit at home waiting every day waiting to feel better, waiting for new treatments, waiting whilst life carries on without me as a significant part of it. I am invisible to the bigger world most of the time. My fear and anxiety is palpable that I may lose my DLA because of changes to an assessment process where my condition is already not a good fit for the prescribed tick boxes and scoring systems of benefits.

Day in day out I have to contend with my illness and make best efforts not to let debility worsen.  Every minute of every day for at least 5 years I have been and felt ill. There is never a respite.

I do not have the energy or function available to fight to raise myself and others out of the plight we find ourselves in through no fault of our own. So when someone, like you, is willing to speak for me it means more than you can know.

Thank you

Rachel Groves

For those outside the UK where the BBC iplayer clip of the debate may not work there is a transcript of the debate.

If I can’t get any support from my own MP I may as well do my bit to encourage and thank those MP’s willing to stand and be counted with us PWME’s (Persons with ME).

#4 Letters to my MP on APPG on ME

Posted 12 August 2010 by rachelcreative
Categories: activism, cfs, chronicfatigue, health, letter, m.e., MP, politics

I now have the Minister’s reply to the letter my MP wrote on my behalf as part of our correspondence on the APPG on M.E.

The Minister, Mr Paul Burstow, talks about the National Service Framework (NSF) for Long-term Conditions and their Quality Standards. He also talks about the work of the group formed in 2008 at the Medical Research Council (MRC) who are looking at new approaches for research into ME/CFS, the MRC CFS/ME Expert Group which is definately progress for ME/CFS research funding in the UK.

I’m very glad The Minister says “As a neurological condition of uknown cause, the Quality Requirements of the NSF apply equally to CFS/ME as they do to any other neurological condition”.  It’s always good to have a Minister re-iterate the Chief Medical Officer’s report findings in the early 00′s that ME/CFS is classed a neurological condition.  Even if a lot of GP’s don’t seem to know that. Which brings me to the next point.

He doesn’t make any mention of the concerns of the West Midlands ME Groups Consortium (WMMEG) , which I raised, over the British Association for CFS/ME (BACME), who have taken over as the training forum for NHS staff involved in the care of people with ME/CFS.  I clearly raised with my MP that:

“The WMMEG feels that BACME “needs to be more publicly accountable, would benefit from wider patient participation and is too much under the influence of the psychiatric lobby.”

 Also “not only is BACME not monitored by the Department of Health, but neither are the NHS services for CFS/ME”.

Perhaps the Minister thinks he covers this when he talks about the NSF’s Quality Standards and perhaps the suggestion is that BACME should be aiming to achieve those standards too. Also perhaps he is addressing this when he says how “it is for local NHS organisations to plan, develop and improve services for local people.  These bodies are therefore best placed to respond to patients’ concerns and needs”.

But I’m not sure that is relevant to addressing the accountability, transparency and approaches of an organisation responsible for delivering training to key NHS staff nationwide.  Perhaps I’m not joining the dots here or perhaps the Minsiter is dodging the issues?

I suspect that the response doesn’t really address the issues raised and I need to ask my MP to write to the Minister again to clarify – focusing on one or two key points.  That’s going to take me a bit of time to figure out.  Firstly because it’s complex and secondly because I have a slightly broken brain thanks to ME/CFS.  So it’s going to take some energy and effort to distill the relevant points into a tidy succinct letter.

All of this reminds me of the last Government and politician’s response to the barrage of criticism of the NICE guidelines for ME/CFS from patients and their groups.  Saying that NICE is an independent body so the Government is powerless but thanks for your letter.  Even if you are questioning accountability – such as did NICE use bias when drawing up the guidelines – most MP’s and Ministers are powerless and in fact say they value NICE’s findings despite patient groups saying the guidelines are not fit for purpose.

Like when questions were asked between 2002-2008 when the MRC spent almost all of  three million pounds on psychologically based research studies into ME/CFS - MP’s and Ministers said MRC is independent and so we can’t do or say anything but thanks for your letter.

Creating these bodies as independent was supposed to give more autonomy, control and fairness but it just seems to be a neat way to pass the buck and give away all the power – or should that be responsibulity? Unless you can commit to make them properly accountable, open to public scrutiny and answerable to someone who upholds the best interests of those directly effected by the outcomes of that organisation how can we ever be sure that they are operating properly and spending that public money well?

You can see I am having difficult right now in pinning down one or two succinct points to raise with direct relevance to the Minister and being sure those are things that Parliament could take action over.

But I am sure there will be a follow up letter/email to be sent – and writing this blog post has helped me a little to see how that letter could take shape.

My MP’s cover letter in full:

13 August 2010

Dear Mrs Groves

I have now received a reply to my letter from the Department of Health regarding Myalgic Encephalomyelitis.

I am enclosing the Minister’s Reply which, as you will see, sets out the current situation with regard to this issue and confirms the website address on which further information can be found.

My thanks, again, for having raised this important matter with me.

Your sincerely

pp Michael Fabricant

The Minister’s response in full to my original emails forwarded by my MP:

2 Aug 2010

Dear Michael

Thank you for your letter of 20 July on behalf on your constituent Ms Rachel Groves of xxxxx, Lichfield, WS13 XXX about chronic fatigue syndrome/myalgic encephaloyelitis (CFS/ME).

I assure your constituent that we understand how distressing CFS/ME is for individuals and their families and carers.

The National Service Framework (NSF) for Long-term Conditions, which was published in March 2005, set out a clear vision of how health and social care organisations can improve the quality, consistency and responsiveness of their services and help improve the lives of people with long-term conditions, including CFS/ME.  NHS organisations are expected to demonstrate that they are making progress towards achieving the level of service quality described in the NSF.  As a neurological condition of uknown cause, the Quality Requirements of the NSF apply equally to CFS/ME as they do to any other neurological condition.

Funding for CFS/ME services is currently a local matter for Strategic Health Authorities and Primary Care Trusts.  Although the Department provides strategic leadership to the NHS and social care organisations in England, it is for local NHS organisations to plan, develop and improve services for local people.  These bodies are therefore best placed to respond to patients’ concerns and needs.

Your constituent may also be interested to know that the Department of Health funds research for health policy development, clinical and applied health research in the NHS, and the NHS costs incurred in supporting research funded by other bodies such as the research councils and charities.

As far as current UK research into CFS/ME is concerned, the bulk of the publicly funded work is being undertaken with funding from the Medical Research Council (MRC), which is one the main agencies through which the Government supports medical and clinical research.  In 2008/09, the MRC’s total expenditure realting to CFS/ME amounted to £728,000.  The MRC is an independent body that receives its grant-in-aid from the Department for Business, Innovation and Skills.

In 2008, the MRC set up a new group to consider how it might encourage new high-quality research into CFS/ME and partnerships between researchers already working on CFS/ME and those in associated areas.  The Group is chaired by Professor Stephen Holdgate and brings together leading experts in CFS/ME and from associated fields that may be involved in the underlying mechanisms of CFS/ME, as well as from the charity sector.

The aim of the Group is to look at new ways of encouraging new research in the CFS/ME field by looking not only at new technologies but also at associated areas that could help inform on the diverse range of symptoms and possible underlying causes of CFS/ME.  The mRC hopes that this will encourage new research towards understanding the causes and subtypes of CFS/ME and lead to an advancement of knowledge in this field and the development of new therapeutic approaches.  The Group has met twice and notes of the meetings can be found on the MRC’s website are www.mrc.ac.uk by typing ‘cfs/me group notes’ into the search bar.

I hope this reply is helpful.

Paul Burstow

Approved by the Minsiter and signed electorincally in his absence to avoid delay

#3 Letters to my MP on APPG on ME

Posted 6 August 2010 by rachelcreative
Categories: activism, cfs, chronicfatigue, disability, letter, m.e., MP

It’s time to report the third installment on my letters to my MP on the APPG on ME and the EDM’s I asked if he would sign. 

After the initial letters to my MP  he then replied saying he had referred my letter to the relevant Minister and as a Minister he was “not permitted to join All Parliamentary Groups or sign Early Day Motions“.

So I questioned why he had referred my request for him to join an PPG to a Minister and seeking some clarification because I had found out that as a Whip he was entitled to join APPG’s and even to hold an officer position.

Here is his reponse in full:

2 August 2010

Dear Mrs Groves

Thank you for your further very thoughtful e-mail of 28th July and for all the links you have kindly researched.

As a Government Whip I am indeed a Minister (Lord Commissioner to HM Treasury and The Government Pairing Whip) and will not be joining any All Party Parliamnetary Groups (APPGs) or signing any EDMs.  I am expressly forbidden from doing so by the Ministerial Code and have sought advice from the Cabinet Office regarding this.

This is not a personal snub to any constituent. Indeed, even when I was a Backbencher, there simply was not the time or point to join every single APPG brought to me attention by constituents, most of whom were more than happy that their concerns were, instead, brought to the personal attention of Ministers which is far more effective.  Being a member of an APPG, like signing an EDM, is passive and has little influence on policy.

I have no further comments to make on this whole matter except to reiterate that I am more than happy to write direct to Ministers on your behalf to ensure that your very important concerns are addressed.  As you know, I am currently in correspondence with the Department of Health regarding ME. However, if there are any other issues you wish me to raise, I am happy to do so.  Are there or not?

Your sincerely

pp Michael Fabricant

I’ve sent a short reply, but I rather wish I had also mentioned that I will take on board his comments that his writing to Ministers is more effective than EDMs and APPGs and try to adjust my thinking accordingly.  I didn’t say that – perhaps next time.  Here is what I did say:

6 August 2010

Dear Mr Fabricant

Thank you for your letter dated 2 August 2010 and for stating your position clearly.

I think it’s wise to wait for any feedback from the relevant Minister to whom you passed my original messages and take it from there.

Thanks

Rachel Groves

I’m new to this lobbying stuff – at least for anything beyond participating in mass lobbying like on behalf of Amnesty and Oxfam.  So I am learning.

I’m not convinced that APPGs or EDMs have to be passive.  But as my MP is not allowed to participate it’s dead end for me.  I’m going to have to try and figure out how to play to the strengths of what’s on offer.

I found some interesting advice about How To Lobby Effectively including that Ministers will not read letters sent from members of the public so I need my MP’s involvemebt to reach them.  However with some MP’s there’s a danger that they become little more than a post box between constituents and Ministers – so I need to watch for that too.

The most effective way to lobby, and the most challenging for someone whose political alliance doesn’t match their MP’s, is to find a way to make the issue relevant and interesting to the MP.  To make them want to be involved.

But I realise possibly the biggest obstacle I have to overcome right now is to be very clear and very concise on what I want to lobby for.  I realise that many of the problems people with ME face which relate to government can sound distinctly like conspiracy theories and that I need to avoid.  I need facts and evidence and to be very clear.

What I’d really like is for a lobbying group of ME advocates to direct me in what to ask for.  Do I focus on:

  • the difficulties we have accessing benefits and assistance
  • the unfairness of medical assessments on our fluctuating condition
  • the lack of funding from the British Medical Research Council on bio-medical research, the NICE guidelines which direct GP’s to offer CBT and GET (shown to be harmful to many with ME) whilst tying their hands to offer various other drug therapies and suppliments which can often give improvement
  • the specialist treatment centres for ME still only really offering CBT, GET and pacing advise as treatments often condeming patients to struggle on alone as they are or having to seek & pay for private treatment
  • the lack of diagnostic testing to be developed and funded, which could be offered to us on the NHS - where a combination of tests show abnormalities . Such as SPECT scans with blood flow to the brain and scarring, T-cell abnormalities, OI/POTS response, exercise testing over 2 days, developing gene expression diagnostics and more. 
  • the GP’s who still can refuse to treat or even believe ME as a physical neurological multi-system illness despite the Chief Medical Officer’s report as such in 2004 and the NIC guidelines - perhaps as many as half of GP’s currently practicing and continue uncheked to dismiss or belittle ME patients leaving them effectively without medical care
  • the cases of parents with children who have severe ME who are accused of child abuse because of a lack of knowledge, expertise and training from the professionals involved
  • how little attention, funding or prioritising ME has had from the government despite it costing the economy millions of pounds and laying waste to hundreds of thousands of lives which are lived in the shadows

There are more.  And with those I have listed there are more concise issues to be picked out and addressed.

I guess I might have to raise every single one of them. Drip drip drip.

Letters to my MP on APPG on ME

Posted 28 July 2010 by rachelcreative
Categories: activism, cfs, chronicfatigue, disability, health, m.e., MP, politics

I received a response to my letter to my MP on supporting the APPG on M.E. It took nearly a month but his letter made me pretty confused.

He said he was referring the matter to the relevant Minister at the Department of Health.

I wondered why he was asking a Minister about me asking him to join an APPG – so I wrote and asked.  I also asked if he would sign a couple of new EDM’s on Disability Living Allowance (DLA).

His response (quite a bit quicker this time) was that “as a Government Minister, I am not permitted to join All Parliamentary Groups or sign Early Day Motions“.

Now this really confused me.  Because first my MP is low level Government Whip and therefore although he does have a Parliamentary appointment,  that’s not what you class as a Minister.  So what’s this Minister role I don’t know about and that doesn’t appear on his web site or his www.theyworkforyou.com profile?

Secondly, Ministers *are* allowed to be members and even officers of APPG’s.  I found the relevant guide to the rules to send to him “Mostly they are run by backbenchers though ministers may also be officers or members of APGs and many groups choose to involve individuals and organisations from outside Parliament in their administration and activities”.

In fact @lizziebee3 on Twitter let me know that the APPG on Diabetes has the Liberal Democrat Chief Whip as its chairman

I also discovered that strictly speaking Ministers and Whips *are* allowed to sign EDM’s but typically they do not.  This I can understand even if I don’t like not being respresented as a constituent in this respect.

So I’ve written my 4th letter/email of this correspondance saying so and seeking clarification, especially on his reasoning for not joining the APPG on ME and his claim to a Ministerial post.

I suspect he’s not the least bit interested in the illness ME, the way people with it are treated or in supporting those doing valuable work to protect very ill, vulnerable and practically invisible people like myself.  He just doesn’t want to state what his real position is.

Since his party became part of the coalition government he seems to be more bothered in the interests of his party than those of his constituents, so I said that too.  Not that he’s ever engaged much with myself on ME or my husband on carer’s.

Here’s his first response to my original emails followed by the rest of the correspondance to date:

“20 July 2010

Dear Ms Groves

Thank you very much for your e-mails of the 24th June regarding Myalgic Encephalomelitis of which you are a sufferer.

I am grateful to you for writing on this important issue and have now referred this matter to the Minister responsible at the Department of Health, Paul Burstow.  I have asked Mr Burstow for his comments on the points you have raised and for confirmation of the Government’s intentions with regard to ME.

I shall, of course, contact you as soon as I receive a reply to my letter.

My thanks, again, for taking the time to write.

Yours sincerely

Michael Fabricant”

In my emails I had urged my MP to join the APPG on ME and provided an example of how important the work of the group was.  I specifically referred to

“The WMMEG (West Midlands ME Groups Consortium) is calling for role of the new British Association for CFS/ME (BACME), who have taken over as the training forum for NHS staff involved in the care of people with ME/CFS, to be examined by the All Party Parliamentary Group on ME (APPG) when the group reforms – preferably before the next BACME training and education conference due to be held in October 2010.”

I thought this would be of particular interest due to our local proximity to the West Midlands.

What I couldn’t understand was why he referred my letter to a Minister when I was asking for his support and for him to join the group.  So I wrote back:

23 July 2010

Dear Mr Fabricant

Thank you for your letter dated 20 July 2010.  However I am a little perplexed by your response.

I wrote to you asking you to lend your support to the APPG on M.E. which had a meeting to reform the group in June, (moved to 1 July 2010).

You tell me you have referred this matter to the Minister responsible at the Department of Health.

I do not see why you would ask Paul Burstow for his comments on my asking you to join an APPG?

I am grateful to the MP’s who did respond to the call to support the important work of the APPG on M.E. and ensured it was reformed.  These include colleagues of yours from the Conservative Party such as David Amess (the newly elected Chair), Graham Brady, Laurence Robertson, Peter Bottomley, Nigel Evans,  Iain Liddell-Grainger, Mark Garnier, Harriett Baldwin, Tony Baldry, Sajid Javid, Peter Aldous and Martin Vickers.

I’d urge you to read my previous emails again including the WMMEG paper which gives a briefing about BACME, a link to which I included in my last email and explained to you why it was so important

http://www.meassociation.org.uk/images/stories/wmmeg_statement_june_2010.pdf

While I am writing to you in regards to the APPG on M.E. (a condition of which I have) may I also take this opportunity to ask you to sign the EDM’s on Disability Living Allowance?

http://edmi.parliament.uk/EDMi/EDMDetails.aspx?EDMID=41309&SESSION=905

EDM 369 – EFFECTS OF JUNE 2010 BUDGET ON PEOPLE WITH DISABILITIES

and

http://edmi.parliament.uk/EDMi/EDMDetails.aspx?EDMID=41333

EDM 393 – DISABILITY LIVING ALLOWANCE

I receive both the care and mobility components of DLA and they make a huge difference to the quality of my life.  I do not claim other benefits, despite being eligible.  DLA recognises that I encounter additional costs because of the level of my disability which has nothing to do with how much I earn (or don’t).

I would urge you as my MP to support these two EDM’s as your party pledged all through the election to protect the vulnerable people in our society.  DLA helps me to be a little less vulnerable, taking it away will leave me with no support at all.  It would place a considerable burden on an already stretched single income from my husband who already works full time as well as having to care for me.

Thank you for your time

Yours

Rachel Groves

And here is the response I have received today:

27 July 2010

Dear Mrs Groves

Thank you very much for your e-mail of the 23rd July.

You may be unaware but, as a Government Minister, I am not permitted to join All Parliamentary Groups or sign Early Day Motions. I, therefore, referred the issue of ME to the relevant Government Minister in order that he is aware of your concerns regarding this illness.

With regard to the EDM on Disability Living Allowance, again, I cannot sign this, but if you have a specific point you would like me to raise with the relevant Minister, please let me know. I am happy to do all that I can to help.

Your sincerely

pp Michael Fabricant

So with the questions about the Minister position (I know about his being a Whip) and the rule I found that allows Ministers to be memebrs of APPG’s here’s my emailed response to him:

“28 July 2010

Dear Mr Fabricant

Thank you for your letter dated 27 July 2010.

I was not aware that you held a Government Minister position.  Please could you tell what position this is?

According to your own web site and to http://www.theyworkforyou.com you are a Government Whip but there is no mention of a ministerial position.

The rules on APPG’s do allow Ministers to be members and officers.

I direct you to paragraph 3) of the House of Common’s “Guide to the Rules on All-Party Groups” published April 2010:

“3) APGs are essentially run by and for Members of the House of Commons and House of Lords. Mostly they are run by backbenchers though ministers may also be officers or members of APGs and many groups choose to involve individuals and organisations from outside Parliament in their administration and activities.”

Here is a link to the guide and I also attach a copy

http://www.parliament.uk/documents/pcfs/pcfsgroupsrules.pdf

So strictly speaking it is not accurate to say you are not permitted to join or support the APPG on ME on the basis of being a minister.

Also according to http://www.parliament.uk Ministers and Whips are also able to sign EDM’s although they do normally do so.

http://www.parliament.uk/about/how/business/edms/

I understand not being permitted to sign EDM’s may be a party matter and due to your position as a Whip? 

I do find it very disheartening that you proudly point to the 54.4%of constituents who re-elected you as an MP on your own web site but now as a Whip you seem to have the Conservative Party’s interests above that of your constituents.

As for raising a specific point on DLA that you could pass to the relevant Minister, it seems you are asking me to pick just one point from a complex issue.  So I shall need to take some time to think about this and perhaps write to you again on that.

I look forward to hearing from you again.

Your sincerely

Rachel Groves (Mrs)”

Ever get the feeling someone isn’t answering the question you actually asked?

Letter to my MP on APPG on M.E.

Posted 7 July 2010 by rachelcreative
Categories: activism, cfs, chronicfatigue, health, letter, m.e., MP, politics

I wrote to my MP on 24 June 2010 urging him to lend his support to the All Party Parliamentary Group (APPG) on M.E. which desperately needs new bood after the last election saw several members leave such as a MP from a nearby town who had to retire for health reasons.

The first letter I sent was based on the draft letter provided by the ME Association with some personal things added – me being a constituent with ME.  Then after I sent the letter a report came to light from West Midlands ME Groups Consortium which helps to stress why the APPG reforming is so important .  And it can’t reform without the involvement of MP’s.

The text of the 2nd letter is below.  I am still waiting for a response to both/either letter.  The APPG on ME was due to meet on 30 June but now are meeting today 7 July 2010.  I wonder if my MP will be there?

24 June 2010

Dear Mr Fabricant

Further to my message earlier today, urging you to join the APPG on M.E., I would like to share with you a relevant paper from the West Midlands ME Groups Consortium (WMMEG) which has just been published.

The WMMEG is calling for role of the new British

Association for CFS/ME (BACME), who have taken over as the training forum for NHS staff involved in the care of people with ME/CFS, to be examined by the All Party Parliamentary Group on ME (APPG) when the group reforms – preferably before the next BACME training and education conference due to be held in October 2010.

It is essential that health professionals and students are properly trained about this serious chronic physical illness which affects over 250,000 people in the UK alone.  I have personal experience, as do have many of my friends with ME, of encountering doctors and trained health professionals who have little or no knowledge of our illness and therefore no understanding of how treatments and other medical problems can interact with ME.

You can imagine the impact that has on my health and wellbeing if you consider, for instance, a person with diabetes or high blood pressure being advised or treated with no consideration or recognition of their medical condition.  ME effects multiple body systems including my neurological responses to my immune, endocrine and cardiovascular systems so is not something that health professionals can afford to be ignorant of in caring for me.

The WMMEG feels that BACME “needs to be more publicly accountable, would benefit from wider patient participation and is too much under the influence of the psychiatric lobby.”

 Also “not only is BACME not monitored by the Department of Health, but neither are the NHS services for CFS/ME”.

 WWMEG has been raising concerns about the psychological bias of the education and training of health professionals around ME since 2007.

 It’s time this issue was taken seriously and I hope this demonstrates how important it is that the APPG on M.E. reforms so it can examine this issue.

 The APPG on ME can only be reformed with the support of MP’s like you as my elected representative. Many key members of the group are no longer able to contribute including Tony Wright, the former MP for Cannock, who had to stand down at the last election due to health reasons.

 Here is a link for the WMMEG paper which gives a briefing about BACME and the consortium’s concerns, as well as a report from the last meeting of the APPG by Dr Charles Shepherd of the ME Association (a prominent ME patient group of which I am a member).

 http://www.meassociation.org.uk/images/stories/wmmeg_statement_june_2010.pdf

 I tried to attach this to the message but got an error from the website.

 Thank you for your time.

 Yours sincerely

 Rachel Groves

Money (for charity) for Nowt

Posted 7 July 2010 by rachelcreative
Categories: charity, chronicfatigue, fundraising, m.e.

I’m loving www.easyfundraising.org.uk and as someone who does makes most of my purchases online it’s a fantstic way to raise a bit of money for charity really easily.

You register, choose your charity (for me it’s the ME Association) and when you want to make a purchase online check if the retailer is registered on easyfundraising, then click through to the site and shop like normal.

I’m averaging a 3% donation on purchases from eligible retailers and it’s a thrill to see the amount I’ve raised steadily climb.

I also get cashback on my Smile credit card – which ironically when I got it paid a better cashback rate than the charity credit cards donated to causes.  So I use my credit card for everything to maximise my cashback (not so great since the credit crunch but still a bonus) and keep a note of each month’s cashback.  Once I’m up to a tenner or more I’ll donate that to a charity – and of course as I use my credit card I get a bit of cashback on that too.

Quiet Blog Suspension

Posted 30 July 2007 by rachelcreative
Categories: misc

I’m putting Dizzy Sky blog on hold for the forseeable future, having not blogged for along time.

Originally I wanted a place to post all the inspired ideas I have and to comment on some of the ridiculous (and good) iniatives I hear about.

But my thinking is dulled and what is still sharp is directed toward other things.  Dazzling ideas are a little thin on the ground.


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