The Department Of Work and Pensions (DWP) is currently in the process of making some major changes to the way in which Disability Living Allowance, Attendance Allowance, and Carers Allowance will be issued.

The DWP's proposals include the preparation of new guidelines on the medical and disability aspects of ME/CFS for use in the decision making process on individual claims.

As a ME/CFS sufferer myself, I was horrified to learn that the DWP has, among other things, still chosen to ignore the UK government's recognition of ME/CFS as a neurological condition.

As I understand it, the ME Association deems the revised guidance on ME/CFS as:

"completely unacceptable in its present form"

This is something that, as ME/CFS sufferers, we should be very concerned about.

What hope do those of us who are severely disabled have of receiving the benefits we are entitled to, if the criteria against which the decision-makers base their decisions is incorrect???

If you would like to read the ME Association's formal response to the DWP's proposed guidelines, click here!

I urge you all to contact your local MP to persuade him/her to attend the All Party Parliamentary Group meeting on 6th July.

With the help of Mandy (Sleepydust Forum Moderator), I have drafted a letter to my MP, which incorporates some of the ME Association's letter to the DWP (mention above). I have included it below.

Feel free to use this letter as a template for your own letter to your local MP. Leave it as it is, change bits, or just use some bits and not others - I don't mind.

Whatever you do - just please - get in touch with your MP as soon as possible - the days are running out - the meeting is 6th July.

If you don't know who your local MP is, you can find out your local MP's name here!

Once you've found the name of your local MP, just visit the web page below. There, you will find a list of all the MPs in the UK, and their contact details (including their e-mail address if they have one).

Click here to find your local MP's contact details!

As Mandy, rightly said in one of her posts on the Sleepydust Forum:

"Remember your MP is there to serve YOU, it is their job, and that is what they get paid for, so lets make them earn their salary this month."

If you have a local ME/CFS support group, doctor, health practitioner, or friends who are ME/CFS sufferers, please show them this post.

This post's permanent web address is:

http://sleepydust-blog.blogspot.com/2005/06/uk-sufferers-lets-stand-up-for-our.html

Let your local ME/CFS support group know.

Tell your nutritionist, homeopathist, GP, therapist, occupational therapist, carer....

Post it in your online diary.

Scream it from the roof-tops!

Urge as many people as you can, to contact their MP (they can print out the template letter I have provided if they want) and send it to their local MP well before 6th July. Let's spread the word and make some changes.

We can make a difference if we all take a stand.

Please don't assume that others will take action - please take a minute to send a quick email to your local MP - at least then you'll know that at least one MP has heard from at least one ME/CFS sufferer!

It is up to us to put the DWP straight. Thousands of ME/CFS sufferers out there are being (and will continue to be) wrongly assessed and declined for Disability Living Allowance (and probably other types of benefits) all because the DWP's guidelines about ME/CFS are largely incorrect!

Let's stamp out this outrageous ignorance once and for all.

Lets get writing...

** If you prefer to send a letter to your MP by post, you can download the letter as a 'Word' document here!**

Alternatively, you can cut and paste the following into an email (if your MP has an email address)

Here is the letter template:

[YOUR NAME AND ADDRESS]

[DATE]

[YOUR MP'S NAME AND ADDRESS]

Dear [MP Name]

Attending The All Party Parliamentary Group on the 6th July - Re. New Department Of Work and Pensions (DWP) Benefit Guidance On ME/CFS

I am writing to you to express my deep concerns about the new Department of Work and Pensions (DWP) benefit guidance on ME/CFS.

I am also writing to ask if you could attend the All Party Parliamentary Group on the 6th July, to represent me and all the other ME/CFS sufferers in your constituency, so that we can get a fair hearing.

As I am sure you are aware, the DWP is currently in the process of making some major changes to the way in which Disability Living Allowance, Attendance Allowance, and Carers Allowance will be issued. The DWP's proposals include the preparation of new guidelines on the medical and disability aspects of ME/CFS for use in the decision making process on individual claims.

As a ME/CFS sufferer myself, I was horrified to learn that the DWP has, among other things, chosen to ignore the UK government's recognition of ME/CFS as a neurological condition.

I was also shocked to learn that the ME Association has not been invited to take part in the consultation process or in the development of the revised medical and disability guidance on ME/CFS.

As I understand it, the ME Association deems the revised guidance on ME/CFS as "completely unacceptable in its present form".

In their own words,"instead of helping to redress the current highly unsatisfactory situation whereby the only way for many people with ME/CFS to obtain any component of DLA is to take their case to Appeal, we believe this guidance is only going to make matters worse."

They also write about the revised guidelines on ME/CFS that: "the group who prepared them are clearly biased towards a psychosocial model of cause and treatment for ME/CFS"

The ME Association's letter from which I am quoting was addressed to Mr Craig Isherwood, Customer and External Relations Directorate (Disability and Carers Service, DWP), dated 20 June 2005. This letter was published on the ME Association's web site in order to keep their members informed.

In that letter, the ME Association explained that their rejection of the revised guidance was because (and I quote) the guidance:

"a) contains far too much biased opinion presented as fact;

"b) contains statements which indicate that the group who prepared the draft have a very poor understanding of certain aspects of this illness, especially in relation to the levels of disability and functional impairment that it causes - for example, the conclusion that severely affected patients are unlikely to require any supervision at home or out of doors since their impairment of cognitive function is usually only mild;

"c) includes terms such as 'perceive as damaging', 'potentially disabling', and 'subjective' in relation to symptoms and resulting disability - all of which indicate that the group believes that inappropriate illness beliefs are far more important than any underlying disease process.

"d) fails to take note of some of the key points relevant to areas being covered that were made in the 2002 Chief Medical Officer's report into ME/CFS.

We are therefore calling for a complete rewrite of these guidelines by a new and more balanced group of health professionals (two psychiatrists and no neurologist is unacceptable), and certainly one that includes health professionals who accept - as does the Department of Health - the WHO classification of this illness (i.e. ME, CFS, PVFS) as being a neurological disorder. There is, incidentally, nothing whatsover in the guidance about research findings relating to the neuropathology of ME/CFS."

The ME Association will be raising their concerns with the All Party Parliamentary Group (APPG) at their next meeting on July 6th.

If you would like to learn more about the World Health Organisation (WHO) classification of ME, CFS and PVFS (and the various myths surrounding what ME/CFS is and is not), please visit:

http://www.sleepydust.net/neurasthenia-chronic-fatigue-syndrome.html

And for an overview of the main political issues faced by ME/CFS sufferers (including welfare and benefits), please visit:

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

As I mentioned above, the ME Association will be raising their concerns with the All Party Parliamentary Group (APPG) at their next meeting on July 6th. I would be very grateful if you could attend the meeting, to represent me and all the other ME/CFS sufferers in your constituency, so that we can get a fair hearing.

It's sad to think that, despite recognition by leading authorities such as the World Health Organisation, bodies such as the DWP still choose to ignore the actualities of this illness.

There are thousands of ME/CFS sufferers just in the UK alone, who are not receiving the fair treatment and acknowledgement they so rightfully deserve. Please help me and other sufferers like me, and those who are currently too ill to even ask for your help, to be given the fair recognition we deserve.

Yours sincerely



A severely affected ME/CFS/PVFS Sufferer,

[YOUR NAME]

The ME Association have recently published this statement below about ME/CFS and Disability Living Allowance. I have included it for your information:

MEA rejects new Department of Work and Pensions (DWP) benefit guidance on ME/CFS

Background information

The government's Department of Work and Pensions (DWP) is currently in the process of making some major changes to the way in which Disability Living Allowance, Attendance Allowance, and Carers Allowance will, in the future, be administered.

On Friday June 10th The ME Association was invited to attend a meeting at which it was explained how the various changes are likely to affect people with ME/CFS who apply for these benefits.

Many of the proposals that were presented at this meeting - eg more personalised claims; improved gathering of further information; proper explanations as to why decisions have been made - appear to be genuine attempts to try and solve some of the problems that everyone agrees are part of the current process of benefit claiming, assessment and decision making.

The DWP proposals also include the preparation of new guidelines on the medical and disability aspects of ME/CFS for use in the decision making process on individual claims. This new guidance will replace that which is contained in the current version of the Disability Handbook.

The MEA has not been invited to take part in this consultation process up until now. Neither have we had any opportunity to take part in the process of developing the revised medical and disability guidance on ME/CFS. And it was not until the close of the meeting that the latest draft of this guidance was presented. Consequently, there was no time available to either read or discuss the content, and no further meetings between charity representatives and the DWP are currently planned.

Having now had an opportunity to carefully consider the content of the proposed new guidance, The MEA believes that it is unacceptable. As a result, the letter below has been sent to the DWP today. We also intend to raise our concerns with the All Party Parliamentary Group (APPG) at their next meeting on July 6th.

The issue of benefits is of enormous importance to people with ME/CFS and The MEA is determined to do all it can to persuade the DWP to provide guidance that is going to be acceptable to people with this illness. We will continue to update the ME Community on further developments.

In the meantime would urge both individuals and local groups to do all they can to persuade their newly elected MPs to attend the APPG meeting in July.



Letter to the DWP from The ME Association

Mr Craig Isherwood
Customer and External Relations Directorate
Disability and Carers Service
Room 103, Government Buildings
Norcross Lane
Thornton Cleveleys
Lancashire FY5 3TA


20 June 2005


Dear Mr Isherwood


Re: Disability and Carers Service Transformation - Improving Decision Making Forum held on Friday 10 June 2005


Thank you for inviting me to attend this meeting on behalf of The ME Association in order to discuss the way in which the DCS is aiming to improve almost all aspects of the decision making process relating to claims for Disability Living Allowance, Attendance Allowance, and Carers Allowance from people with ME/CFS.

As I said during the meeting, the basic proposals put forward in relation to many of the practical aspects of the decision making process all seem very sensible.

However, the same cannot be said for the revised guidance on ME/CFS which was circulated right at the end of the meeting. Consequently, there was no time at all to comment on the actual content of this very important information.

I have now had the opportunity to discuss this draft with ME Association trustees. Our view is that the information and guidance provided is completely unacceptable in its present form. This is because the guidance:

a) contains far too much biased opinion presented as fact;

b) contains statements which indicate that the group who prepared the draft have a very poor understanding of certain aspects of this illness, especially in relation to the levels of disability and functional impairment that it causes - for example, the conclusion that severely affected patients are unlikely to require any supervision at home or out of doors since their impairment of cognitive function is usually only mild;

c) includes terms such as 'perceive as damaging', 'potentially disabling', and 'subjective' in relation to symptoms and resulting disability - all of which indicate that the group believes that inappropriate illness beliefs are far more important than any underlying disease process.

d) fails to take note of some of the key points relevant to areas being covered that were made in the 2002 Chief Medical Officer's report into ME/CFS.

So instead of helping to redress the current highly unsatisfactory situation whereby the only way for many people with ME/CFS to obtain any component of DLA is to take their case to Appeal, we believe this guidance is only going to make matters worse.

We could, at this point, produce a detailed critique of the draft, but given the fact that no further meetings are planned which will involve patient representatives, this is not a satisfactory solution.

We must also point out that if anything like this draft is eventually presented as revised guidance, then the DWP will inevitably find itself facing a political campaign from a group of people who believe that their views are just not being listened to on many key aspects of their illness.

As was speculated on during the course of the meeting, there appears to be a fundamental flaw in the way these guidelines have been produced in that the group who prepared them are clearly biased towards a psychosocial model of cause and treatment for ME/CFS. We are therefore calling for a complete rewrite of these guidelines by a new and more balanced group of health professionals (two psychiatrists and no neurologist is unacceptable), and certainly one that includes health professionals who accept - as does the Department of Health - the WHO classification of this illness (ie ME, CFS, PVFS) as being a neurological disorder. There is, incidentally, nothing whatsover in the guidance about reseach findings relating to the neuropathology of ME/CFS.

We feel it is only right to place this response in the public domain in order to keep our members informed and will therefore be placing a copy on our website today. We also intend to raise our very serious and urgent concerns about the proposed content of this new guidance with the All Party Parliamentary Group on ME/CFS when they next meet at Westminster on July 6th.

For your information, we shall be sending by separate post a copy of the May 2005 ME Alliance report on Early Diagnosis and the latest (ie July 2005 - due for publication shortly) edition of our guidelines booklet for health professionals as the information contained in these documents is relevant to the guidance on ME/CFS that needs to be given to the decision makers. If you would like further paper copies of either publication please let me know.



Yours Sincerely



Dr Charles Shepherd
Medical Adviser

ME Association
4 Top Angel
Buckingham
MK18 1TH

Mononucleosis can be a cause of Post Viral Fatigue Syndrome, ME/Chronic Fatigue Syndrome .

I myself, came down with it years ago and it's what triggered the Post Viral Fatigue Syndrome that I still suffer from today.

What I didn't know, was that Mononucleosis (also known as 'Glandular Fever ') affects people differently, depending on their age. I've researched this area and have now written 3 different pages for you, one on each main age group it affects differently.

- To find out how Mononucleosis (Glandular Fever) affects babies, infants and children, click here!

- To find out how Mononucleosis (Glandular Fever)affects teenagers, click here!

- To find out how Mononucleosis (Glandular Fever) affects adults, click here!

I hope you find them interesting!

Claire
Editor of sleepydust.net