M.E is real...

I discovered an e-petition last year whilst browsing relevant websites... which I immediately signed as I like many others wanted the government to realise that we are real people suffering a real illness.....

This petition was in due course to be submitted to 10 Downing Street.... and the contents of the initial petition are as follows....

The latest DWP Guidelines and PACE are still directing the Health Service to treat ME sufferers with GET and CBT (a tool used for mental illnesses) despite the mounting evidence from a vast amount of research proving that ME is an organic not a psychosomatic disease and that the treatments forced onto those affected do in fact cause more harm than good and can worsen the condition of patients. Money should instead be invested in research into the physiologocal aetiology of ME/CFS and its treatment. Patients should not be forced into becoming psychiatric cases or lose their benefits.

We the undersigned petition the Prime Minister to get the Health Service and medical profession to accept the WHO classification of ME/CFS as an organic neurological disorder and not as a psychosocial syndrome.

(Submitted by Konstanze Allsopp Deadline to sign up by: 22 January 2008 Signatures: 8,481)

The decision from the government was delivered on the 27th February 2008... and is as follows....

There is no established cause of chronic fatigue syndrome/myalgic encephalopathy (CFS/ME). A number of different potential aetiologies including neurological, endocrine, immunological, genetic, psychiatric and infectious have been investigated, but the diverse nature of the symptoms can not yet be fully explained. The World Health Organization classifies CFS/ME as a neurological illness, but we recognise that many others working in the field of CFS/ME believe that until research further identifies its aetiology and pathogenesis, there is a risk of restricting research into the causes, mechanisms and future treatments for CFS/ME. What is important to recognise that CFS/ME is a genuine and disabling illness and health professionals must recognise it as such.

As will all serious illnesses, it is important that patients, their families and the healthcare professionals looking after them have the best scientific information available and the PACE trial has been designed to help them decide for themselves what treatment is likely to be best from them. There is currently very little information about the relative benefits of cognitive behaviour therapy (CBT) and graded exercise treatment and a scientific trial is the only way to find out which is the most effective approach.

The aim behind CBT is to support a sustainable improvement in functioning and adaption to illness, via gradual steps that are mutually agreed and regularly reviewed by patient and clinician. Applied appropriately, CBT can help the patient cope confidently with their illness and help them adjust to some of the consequences of being unwell and to feel more in control of their illness. In common with other illnesses such as cancer where it has been successfully used, its use does not imply that the cause of the illness is psychological.

As with any treatment, an explanation of the benefits and possible harmful effects of CBT should always be provided before decisions are made to offer and accept the treatment. It is important that health professionals recognise that people can vary in response to the treatments available and that it is appropriate to review therapy if symptoms appear to worsen as a result.

The Medical Research Council's support for the PACE trial does not mean that money is not available for biomedical research and the Council remains committed to funding scientific research in all aspects of CFS/ME. Nevertheless it is important to maintain high standards in funding decisions and the MRC maintains a rigorous a decision making process, only funding research that is likely to make a significant contribution to knowledge and is a good use of tax payers' money. The decision to reject proposals is taken on the grounds of scientific quality and whether the research proposed would be likely to inform the knowledge base.

The report from the prime ministers office can also be viewed at:

http://www.pm.gov.uk/output/Page14656.asp

I think that it is a disgrace, that within this century, we as sufferers have to sign such a petition to gain recognition... C.F.S/M.E to date, has proven to be a disabling and devastating illness.... and many have lost there hopes and dreams.... suffered financial loss... fight with the benefits system and struggle to get by on a day to day basis....

The N.H.S regard us as being depressives.... and prescribe ant depressants.... ooppss... I wonder why they do not work.....

Society regards us as just being tired... we have our 8 hours or so like any one else.....

Regardless of the negative input... we struggle to get on, we have been left with a mere existence.... but to date our determination to succeed has became our bible....

It is about time that we gained at least an ounce of recognition.... after all many of us are still trying to remain in employment.... but then again, we are then subjected to the negativity of employers....

There are many so called, lazy people out there who simply do not want to work, drug addicts who are lead by the hand.... and those who have become alcoholics.... who bleed the benefits system dry....

All we ask is for is understanding.... as to be honest, many of us have worked for years and are still trying to work, pay tax.... only to find out that the leeches of society are living on our tax contributions.....

Asylum seekers are themselves costing the government millions.... and again it is tax payers money that is being invested into there well being.... and here we are as British Citizens, who are ill through no fault of our own, struggling to claim benefits, being dismissed from receiving Disability Living Allowance... etc...

The system is all wrong....

C.F.S/M.E within itself a very debilitating, disabling and misunderstood illness... and tonight I am inviting you to partake a journey of realisation.....

So if you are a friend, carer, parent, aunt, uncle, gran or grandpa... etc... please spare a moment of your time... and partake this journey of understanding... this within will arm you with the required knowledge to provide support to any close family members/friends.... that require understanding.... yes, I am aware of the factor that within... they look well... but it is a well known factor... that the naked eye... does not detect nor understand what it can't see....

Cancer in itself... is always a good conversation starter.... that we can understand... and can at least give support to those that suffer.... but we can not see it.... and to this day... it has been well reported, that a dog has the ability to smell it... and within this concept... is a virtue for many suffers.. whose life's have been saved.... by there pet dog....

Now what would happen if the detrimental effects of cancer were never publicized as being as horrific as they are.... and the knowledge of the secondary effects... due to trying to cure it as in radiation and chemotherapy left the person involved.... more helpless than the cancer itself.... with only a certain percentage of full recovery.... yes, sometimes... they reach a stage of remission.... until the cancer comes back.... but due to the advance in medicine... if the cancer is caught a early stages... then the sufferer can and does.... carry on a normal and healthy lifestyle....

So now you understand the concept of cancer... but do you understand exactly how that person is feeling... mentally and physically?

Me thinks not....

Now we approach the junction... and this road leads to the world of a C.F.S/M.E sufferer... and due to the controversy negative publication... you feel lost... but please do not despair... I know where we are going.....

Now we are approaching the publicized symptoms....

as in....

Other reported symptoms...

But we are still disregarded... looked on as being depressives....

But please take a minute, close your eyes... and imagine how you would feel if you had to suffer all or some of these symptoms at once.... bearing in mind... how poorly you would feel suffering only one symptom at a time....

I take it that you are feeling really bad... as realisation sets in... well imagine how we feel... and the press have publicized this as no more than yuppie flu....

Yes, I know what you are thinking... how dare I even use cancer as an opposite....

Well why not, as said above... people die from cancer... but what the press has not published is the factor.... that people also die from C.F.S./M.E.

SORRY, DID YOU NOT KNOW???

Well now you do...

Case scenario.....

Sophia Mirza

The above... is perhaps one of the most documented cases of neglect... amongst the health providers....

Can I ask one question.... after taking such a journey to realisation... would you, if you were a suffer expect to have to sign a petition to receive recognition and receive medical help for such an illness???

Me thinks not, but then again.... what the blood tests do not show... the eye cannot see.... well that is the doctors prospective of C.F.S/M.E and to date the diagnose itself is only given after elimination of any other case factors.....