Voices - The Prime Newsletter - December 2007

VOICES

Voices is the Prime Newsletter

December 2007

Welcome to PRIME voices, an email newsletter from the PRIME Patient Experience Database.

The purpose of the newsletter is to highlight important qualitative data on people’s experiences of ME/CFS.

We will send out ‘digests’ of some of the key findings from our research every other month. These will have a theme, for example the database contains over 150 experiences from patients and carers about coping strategies.

To find out more, follow the links at the end of each story on the right.

PRIME News

CHROME - New Information available!

PRIME has been working with CHROME (Case History Research on ME) to bring their dataset of the severely affected to a much wider audience. CHROME’s aim is:

“To collect data in the form of detailed case histories and to monitor the progress of patients diagnosed with myalgic encephalomyopathy who have deteriorated to the point where they are not able to care for themselves, and to publish the useful results of such research”.

Chrome Logo

The CHROME dataset, which has numeric and descriptive data from over 170 people over 12 years, has now been imported to the PRIME site.

You can read more about the CHROME data here: http://chrome.prime-cfs.org

You can search the CHROME data via the PRIME Patient Experience
Database: http://www.prime-cfs.org

Prime CHROME data

The severity of different symptom groups can be viewed over time:

  • Red: ability to self-care
  • Green: muscle pain
  • Dark blue: other pain
  • Pink: cognitive symptoms
  • Light blue: ability to stand
New Developments

We are now recruiting people to add their own experiences to the PRIME Patient Experience Database. This will enlarge the overall size of the database, and probably broaden the range of experiences. Both of these factors will make the database even more useful to researchers.

We are also testing on line, secure and confidential, self-management tools to help people with ME/CFS.

If you would like to get involved, get in touch via the PRIME website:
http://www.prime-cfs.org/?o=1482
Working with other groups

PRIME is a member of the ME Observatory Project, run as a collaboration between Action for ME, University of East Anglia, London School of Hygiene and Tropical Medicine and Hull University.

It aims to establish a research ‘observatory’ gathering data about the clinical and social factors affecting sufferers. The study also aims to increase availability of information about the illness, and reduce the stigmatisation, that can arise from a lack of understanding.
Severely affected

Difficulty standing

“I have continued to improve very slowly thanks to regular visits to the swimming pool for swims, exercises and relaxation. Several months ago I began to walk a few yards leaning heavily on a requested pulpit frame. It took 4 months now I can walk in the house and garden with a stick on good days but I do have to keep sitting back into my electric wheelchair when legs get heavy and weak, back aches and pains and I feel unsteady or dizzy. Just standing for a period is still a big problem for me.”

click here to read more

Effect of exams

“She improved to the state that she could walk short distances with one crutch. However, she still did use the wheelchair for distances. Both the tiredness and the pain got better at this time.

However, X slowly began to decline again in 1999, probably due to the physical and mental exertion she was under at the time due from revising for her two A levels which she did from home....” 

click here to read more

Getting a diagnosis

“During the first eleven years it was difficult to get a diagnosis due to the fluctuating nature of symptoms. I was my own worst enemy in the sense I truly believed that I could work off "whatever the illness was".
However the harder I worked and played the worse it became.

What made it more difficult in the early years to take myself seriously was the fact that I had periods of relative wellness ? never as well as before the original onset but able to keep going with periods of feeling very ill (when I felt better I could not believe I could have felt as ill as I did!)“

click here to read more

A coping strategy

“Over the last year I have used meditation as suggested by Dr W (XX Hospital). I think it is helping a little with my sleep pattern, however when I am exhausted or generally have a bad day, I find that I cannot meditate.

On the whole what helps me the most is firstly to stay clear if possible of any viral infection, and secondly to pace myself which includes diet and varying the activities - mental, physical etc.

I have had only one bad relapse this past year, (after viral infection) which lasted approx 5 weeks.

Mostly I am coping by sticking to my regimes of activity followed by rest. I am totally unable to do anything in the evenings. Chemical hypersensitivities remain one of my biggest problems, as they affect any form of social inter-action.“

click here to read more

Neuro-cognitive symptoms

“I think that it is very important that our illness retains the name ME until a more specific name is found. CFS is a less specific name and gives the misleading impression that we are mainly suffering from tiredness due to over exertion. The neuro-cognitive symptoms are completely disabling and isolating at their worst. Being unable to watch TV, read or have company are among the worst aspects of ME.”

click here to read more