ME in the Big Issue North, again

ME in the Big Issue North, again

Issue 722, 19 – 25 May

With acknowledgement to Trevor Wainwright for bringing attention to several letters published in response to Sir Peter Spencer’s comments in the Big Issue North in the wake of ME Awareness Week.

ME – DOCTORS UNHELPFUL

Doctors are still unsupportive to patients who have ME, according to a survey by Action for ME. One in three sufferers of the chronic disabling illness said their GP was either unsupportive or uninformed about the illness. “It is very disturbing to see figures like these six years after the Chief Medical Officer called for better treatment, care and understanding of ME,” said Sir Peter Spencer, Action for ME chief executive.

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Responses to:

Letters to the Editor, The Big Issue in the North, 10 Swan Street, Manchester M4 5JN
Tel 0161 831 5550
e mail: letters@bigissuenorth.co.uk

 

Response 1:

Submitted under the original title “Action for ME massage figures in bid to campaign for psychological treatments for physical Myalgic Encephalomyelitis, ME” and slightly edited for publication:

The methods and methodology by Action for ME used for their two surveys in 2001 and 2008 were completely different. A very large percentage of the 2008 survey was carried out online without any apparent check on who was an AfME member, or ME sufferer or carer for someone with ME.

AfME broadened the concepts of psychological graded exercise therapy and cognitive behavioural therapy and who can assume the role of the “therapist” so it appears that far more patients were formally treated than was actually the case, and that the results of this “treatment” were far more successful that was the case.

AfME did this in support of their “biopsychosocial” illness model of chronic fatigue, which has large psychological and social components and a small physical component – the prevailing view in the medical profession.

ME is not chronic fatigue as ME is defined by the World Health Organisation as a physical neurological disease and the WHO’s classification system is binding on the UK government. What we need is a charity that will stand up to the government for ME sufferers and carers and not work with government against us.

Ciaran Farrell, ME Sufferer and AfME member, London

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Response 2:

Thank you for printing the quote from Sir Peter Spencer regarding the Action for ME survey. However this is such old news, we could have told you this, years ago.  What is so sad is all the children and young adults who are suffering.

There are medical tests that GP’s should be allowed to do to see if enteroviruses are causing people to be ill but they are constrained. This is not the fault of the GP’s but our governments, in that education about the aetiology of ME is not given to doctors. Instead they are educated in the psychology of the disease – that it is all in the mind and in our belief systems.

Successive governments have treated other diseases such as asthma, autism, Parkinsons, and multiple sclerosis in the same way. People like us need your input to educate the public about what is really going on in the ME world. Please listen to the little people out there suffering ME and the carers – they know the truth.

Joy Rees

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Response 3:

This is the full version as submitted by Mr Wainwright; sections in italic and between brackets were edited out:

Yes, doctors are still unsupportive to people with ME (ME – DOCTORS UNHELPFUL, Issue 722, and subsequent letters). Sadly this is a fact that has changed little over the years. My daughter was diagnosed by a respected paediatrician and other doctors in 1993. All she could say was: “I don’t believe in it, there is no such illness and no information anywhere”. Never was anyone so wrong as we found three books about ME in the local library, two of them written by prominent doctors who suffer from the illness, and visible signs of the debilitation, with my daughter eventually ending up in a wheelchair.

The doctor also said alternative medicine would not work but it did, up to a point. My daughter now has limited health – unpredictable like most chronic illnesses but she is out of the wheelchair.

Yes, it is still disturbing that even six years after the Chief Medical Officer’s report we still have this ignorance. Equally as disturbing is the fact that for even longer we have had an All Party Parliamentary Group on ME and still we are no nearer better facilities or even a cure.

(Meeting after meeting discussing past issues but not moving forward and ignoring what the sufferers really want). There have been many initiatives from individuals and small groups, which sadly were not backed up by those who could have offered their support but did not wish to take part for fear of causing upset or political reasons.

As a result of this lack of co-operation and willingness there is still the failure today to recognise and offer support to sufferers and the newly diagnosed, as there was when my daughter was first diagnosed, (and even well before that. Even the fact that there are prominent celebrity sufferers has proved to no avail as they too have been reluctant to speak out has let to he continued ignorance. It is a sad fact that because the symptoms of ME can mimic other illnesses, and that there is as yet no specific diagnostic test, ME is an illness that makes everyone an expert, thus it has been easy to link it with Chronic Fatigue Syndrome trivialising an illness that has claimed many lives in the past, and may well claim many more in the future).

ME really is a serious illness, sadly lacking in leadership, (which shows in the ME community, which is why every event become just another fiasco).

Trevor Wainwright, Castleford

 

 

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