Latest release from the 25% ME Group:

9 September 2005

The 25% ME GROUP supports suspension of PACE and FINE Trials

The 25% ME Group is the only ME charity specifically supporting severely affected sufferers of ME (ICD10: G93.3). We represent the interests of severely ill ME patients, many of whom are so ill that they are totally bedridden, some of whom are wholly dependent on carers for the basic functions of daily living and others who are
lucky enough to be able to leave home in a wheelchair occasionally.

The 25% ME Group is pleased to learn that the ME Association is calling for the PACE trials to be suspended and would like to add its voice in support of this call.

We would also call to include the FINE trials in this suspension. These are aimed at the severely affected and are using techniques that are wholly inappropriate to the house and bed bound sufferer.

We would also agree with the MEA statement, based on feedback received from members that:

"We find it extremely disturbing that the evidence so far points to the main influence in the newly created CNCCs to be psychiatric and would ask for more input from Patient groups in the running of these centres and a move away from the outdated and harmful methods of treatment i.e. CBT and GET."

We demand and expect the MRC to fund research into the physical causes of ME and to withdraw funding from the psychiatrically influenced PACE trials and from centres promoting CBT and GET as treatments for the physical illness ME.

We deplore the fact that the two promising genetic research studies being conducted by Dr John Gow (Scotland) and Dr Kerr (England) are having to be funded through patient support groups and charities.

We also take this opportunity to call upon the "Wessely School" psychiatrists to acknowledge the wealth of research that discredits their view of ME as a 'somatic disorder', including but not limited to research into cardiac abnormalities, genetic abnormalities, immunological abnormalities, neuroendocine abnormalites and vascular anomalies.

25% ME Group
21 Church Street
Troon
Ayrshire
KA10 6HT
enquiry@25megroup.org
http://www.25megroup.org

For more about the Wessely School click here!

This is a very important post that I somehow overlooked. Mandy (Sleepydust Forum Moderator) took the time to draft a reply for all of us ME/CFS sufferers who wrote to our MPs recently and either got no reply, or were told they couldn't attend the APPG meeting.

Here's Mandy's post of 8th July 2005:

Dear All

Thank you to everyone who wrote to or e-mailed their MP.

I know that in light of Thursdays horrific attacks in London; you may find that you receive little or no reply from your MP for a long time on this matter, as I am sure they will be very busy discussing Thursdays events.

However, you may find that your MP didn't make it to the All Party Parliamentary Group meeting on the 6th July, I do feel that time may have been against us on that one, as most MP's I'm sure will have had other plans at that time, and changing plans at short notice can cause problems, even for the best of us.

However, I do feel there is more they could do to help than just sit back and watch, to see if the issues are raised within the House of Commons.

After all, they are there to serve us, and we elected them, as our representative in the government.

With this in mind, I have drafted a standard reply to any correspondance from your MP, stating that they could not make the APPG meeting on the 6th July, and with no record or reply from them regarding their signature on the EDM No. 260.

Please do make any necessary changes required so that the reply is more suited to what your MP has sent you.


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Dear (Insert your MP's name here)

Thank you for your reply concerning the APPG on the 6th July 2005. I understand that you were unable to attend the APPG meeting; I do hope there was someone there who was able to speak up for us (the sufferer). I did feel that we would be poorly represented, which was the reason I asked if you could attend this meeting on our behalf.

Please help me and others like me, who are currently too ill to be able to ask for your help; there are thousands of M.E. sufferers just in the UK.

Could you, or rather, would you be able to be my voice and the voice of all the M.E. / C.F.S. sufferers within your constituency, and write to the Minister of State responsible for Health Services, Rosie Winterton MP & Anne McGuire MP, the Parliamentary Under Secretary of State at the Department for Work and Pensions, on our behalf, letting them know that us sufferers are concerned about the new changes that were discussed at the APPG meeting on the 6th July 2005, and that we just want the fair recognition that everyone deserves.

Here to help you, is a link to the ME Associations website, where they show the major issues that are faced by all ME/CFS/PVFS sufferers in this country: -

http://www.meassociation.org.uk/fnatiss.htm

Also in closing, I unfortunately don't seem to have received any correspondence from your good self with regards to the Early Day Motion No. 260, and on checking the status of this EDM; I have noticed that has not yet been signed by your good self. Could you please let me know if there is any reason why you would not wish to help save some of the 3.5 billion GBP M.E. costs this government annually?

Many Thanks, from a severely affected ME/CFS/PVFS Sufferer,

(Enter your name here)

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Please do check and see if your MP has already signed the Early Day Motion No.260 before you include that part of the letter.

To find out for yourself who has signed the EDM, you can go to the following page and check the signatures. Click here!

Alternatively, you could go to this link and just click on your MP's name to see which EDM’s they have signed. Click here!

You just need to click on the fist letter of your MP's last name for your MP's name to appear in the list.


Hugs & well wishes to all

Mandy
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