A Response to the ME Association Survey “Managing my ME : What people with ME/CFS and their carers want”

Stonebird : the Lived Experience of Severe ME

A Response to the ME Association Survey  “Managing my ME : What people with ME/CFS and their carers want”

Greg & Linda Crowhurst

28th May 2010 : Permission to Repost

This survey is hugely disappointing,  because it still perpetuates the myth that management is all that people with ME need; if only it was done better.

The Survey just does not ask the correct  questions : 

1. “ do you want a Biomedical service ?”; 

2. “do you want specific  Biomedical ME tests not currently available ” ?;

3. “and do you want real Biomedical treatments,rather than therapy, charading as treatment “?

The Survey does not adequately  reflect  that there  is an alternative path to the current psychosocial management approach; the biomedical path. This is even reflected in the unfortunate tile of the survey, which is already validating a “management “approach, right from the beginning.

 There are no apparent new options or innovative questions in this survey. 

Where was the question asking if people want better ME biomedical testing , currently not available on the NHS ? 

Where was the question that raised the point that there might be biomedical treatments available  , if only the NHS would provide them  ?

We know there are mitochondrial and pesticide tests. Why weren't they included as a possibility for people to say they want ? Where was the question “do you want proper brain scans, such as PECT and SPECT, which would show brain dysfunction ?”

Did the survey   ask people what definition  they want to identify their disease ?

 Did it raise awareness that the Canadian Definition  should be an option as opposed to the vague,  Oxford and Fukuda criteria ?:

Although the questionnaire asked who diagnosed you, it didn't ask whether the Doctor believed it was a physical illness. This is key to finding out who has ME and who has Chronic Fatigue. This is vital information which would highlight who specifically is answering the questionnaire and would verify its validity as truly representing people with ME.

Did it  address the needs of the severely and very severely affected ? Not in our opinion.

The survey concluded that the Severely Affected found it difficult to impossible to complete it ,  even though it could have been done in stages.  So how are the severely affected supposed to make their needs known ?

 There were no questions specifically geared to the severely affected, despite the fact that the current management regimes are failing them badly.

Most of these questions would not be relevant to the most severely affected, who cannot get to clinics, cannot participate in group sessions, cannot even undergo a pacing regime, because they do not have enough functional ability and are desperate for medical treatment, not management.

When it came to symptoms, the survey did not  raise any of the more serious   symptoms that are characteristic of severe / very severe ME, which again indicates that it was not geared towards the severely affected

How can it be that those who are most ill, most neglected, most dismissed and least helped , with such dire and severe , sometimes life-threatening  and deteriorating symptoms, were not adequately enabled o have a voice  through this questionnaire  ?

This survey claims to be a definitive document about the needs of people with ME. Yet the  more extreme experience of ME is not represented  enough in the questions, we feel. 

The most important result of  the questionnaire , we feel,  is that CBT and GET are not effective or wanted.  This confirms every other previous survey.

Our main concern is that the survey accepts the management approach, with no emphasis in the questions upon a fundamental change in ossible service provision and attitude.

There is no question that asks whether  people are happy to be treated with rehabilitation techniques without any proper ME -specific tests and  treatments , for  the underlying causes of their illness; which is the current NHS position.

It is  a travesty, we feel,  to call this  Survey “Managing my ME;  it sounds more like managing to ignore new possibilities. 

It is time for a change to the management approach.

Management is rehabilitation ,  which is bizarre given that  the underlying illness continues to go ignored, untreated and avoided.

The title implies agreement with the management approach, yet rehabilitation in general, comes after an illness has been treated – just not in the case of  ME. There is no way of knowing whether somebody has recovered enough to engage in rehabilitation techniques, so how can a management approach be the correct focus ?

This is a shame because it could have been an opportunity to really challenge the current lack of proper biomedical service provision for people with neurological ME.

The survey  failed to really raise  the issue of the need  for proper diagnostic criteria,  which would clearly separate once and for all people with ME from people from Fatigue . 

It could have been an opportunity to look with fresh eyes upon the whole  of ME service provision and ask people to comment on the lack of a biomedical approach in the UK. It's an opportunity disappointingly missed.

“Managing my ME” does not begin to address the real need, which is a biomedical service for all.