 |
Email the Society |
 |
Donations |
ME/CFS AUSTRALIA (SA) INC
Registered Charity 698
Mailing address:
GPO Box 383,
Adelaide,
South Australia 5001
Office:
266 Port Road,
Hindmarsh,
South Australia 5007
Ph: (08) 8346 3237
('834 MECFS')
Office Hours:
Wednesdays, 10am-3pm
Support Line:
(Mondays and Thursdays,
10am-3pm)
Ph: (08) 8346 3237
SA country callers:
Ph: 1300 128 339
(local call)
FIBROMYALGIA HELP: Contact Fibromyalgia SA at the Arthritis Foundation of SA 118 Richmond Road, Marleston 5033 Ph: (08) 8379 5711 |
ME/CFS Australia (SA) Inc supports the needs of sufferers of Myalgic Encephalomyelitis, Chronic Fatigue Syndrome and related illnesses. We do this by providing services and information to members.
|
Disclaimer
ME/CFS Australia (SA) Inc aims to keep members informed of the various research projects, diets, medications, therapies etc. All communication, both verbal and written, is merely to disseminate information and not to make recommendations or directives.
Unless otherwise stated, the views expressed on this Web site are not necessarily the official views of the Society or its Committee and are not simply an endorsement of products or services.
| Become a Member | |||
|
ME Association Survey
Tuesday 8 June 2010
MeShare reports on the results of a large-scale survey of ME/CFS patients conducted by The ME Association:
ME Association Survey
Today the ME Association published the results of probably the largest-ever survey of people with ME/CFS and their carers. With 4,217 questionnaires completed the evidence carries considerable weight. In the report the MEA explain their objective in carrying out the survey:
"The aim of the survey was to gather a wide range of patient and carer experience and evidence relating to all aspects of management. The survey also asked people what sort of services they wanted, which health professionals they wanted to see involved in their care, and where they wanted referral services to operate from."
The MEA have made the report freely available. The written analysis and comments seem reasonable and measured. The report states:
"Much of the feedback – especially in relation to approaches such as pacing, cognitive behaviour therapy (CBT) and graded exercise therapy (GET) – is in line with what we already know from previous questionnaires and anecdotal feedback. But some of the feedback is not. This obviously raises questions as to whether some of the generally accepted conclusions about management options, often based on less robust patient evidence, are correct."
The report includes a chart showing how respondents rated five common symptoms in order of severity. Just the numbers of which symptom respondents reported was their most severe are shown here:
|
1st |
Muscle Fatigue |
1730 |
Cognitive Dysfunction |
548 |
Pain (esp in muscles&joints) |
504 |
Sleep Problems |
461 |
Mobility Problems |
197 |
The MEA explain, "These results are very much in line with what has already been reported in the medical literature and used in various clinical definitions of what constitutes ME/CFS." It is interesting to note that while many reported 'muscle fatigue' was their most severe symptom, substantial numbers indicated that cognitive dysfunction, or pain or sleep problems were the most severe for them.
This information shows the variations seen amongst people termed 'ME/CFS', and raises the long-standing question of 'sub-groups'. Do people with different dominating symptoms have the same illness or are several illnesses involved?
The 'Affect on symptoms' of common therapies is likely to continue the debate over the Lightning Process. From 101 responses 55% did not improve with LP and 21% got worse. Only 26% 'Greatly improved' with this therapy and 19% 'Improved'. If LP is considered to be a cure then those who simply 'improved' might be considered failures of the therapy. Presumably people who 'Greatly Improved' are filling in a questionnaire for PWME because 'Greatly Improved' does not mean cured. I guess that people who were actually cured by the therapy are long gone and getting on with life, so their feedback is not included in the survey. It seems a shame that 74% who replied to this question in the MEA's survey spent a lot of money and energy without getting great improvement.
With CBT, out of 997 responses only 3% 'greatly improved' and 23% 'improved'. As suggested with LP, those who were cured by CBT might not be included in the survey; though I have yet to hear of anyone who was cured of M.E. by CBT. 80% of respondents who reported having CBT identified a medical or psychology professional as their source of 'Advice and Supply' - which makes the 74% failure rate for the therapy rather shocking.
Graded Exercise Therapy (GET) faired much the same, with 3.4% 'greatly improved' and 18.7% 'improved'; but seems to have caused more problems with 56% being made worse by this therapy out of 906 responses. In fact, according to the MEA's data, GET caused more problems than any other therapy listed in their report.
The report remarks on therapies for pain: "The best response was to opiate analgesics (63%). NSAIDS, aspirin, paracetamol and acupuncture all helped around 50% of respondents. Amitytriptyline, pregabalin andgabapentin all made around 30% of respondents worse. Aspirin and paracetamol had the fewest adverse effects (3%)."
For every pain drug included in the data substantial numbers of respondents reported 'no change' or 'worse'; and none stands out as a treatment of choice. I guess this means that experimentation is needed for PWME to find out if one of these will work for them. What is more, the very mixed results in this section suggest that considerable numbers of PWME might have inadequate or no pain relief either because these treatments are ineffective for M.E. pain or the drugs are not tolerated.
Medications for sleep problems had similarly mixed results, again suggesting for at least some PWME they have nothing to help with this common problem.
The survey report says about therapies for bowel problems: "Dietary modification was the most effective for bowel problems (69%). Antispasmodics were 58% effective, bulk laxatives 52% and increased dietary fibre 47%. Increased dietary fibre and bulk laxatives made 16% of respondents feel worse." Interestingly, over 50% of respondents provided data in this section, showing how common this problem is.
The results of question 23 will come as no surprise to many but are rather sad reading nonetheless.
"How would you rate your current standard of medical care?"
Average |
24.9% |
Not receiving any |
21.8% |
Good |
20.1% |
Poor |
16.3% |
Very poor |
11.3% |
Excellent |
5.8% |
Answered |
2965 |
I don't quite understand question 25; "Do you think that your medical adviser is sufficiently aware of the range of therapies available for ME/CFS?". As the NICE guidelines pretty much only recommend only GET and CBT, describing this as a 'range of therapies' seems rather generous, and these are all that doctors are required to be aware of.
It therefore seems stunning that only 27.7% of 3297 respondents answered this question 'yes'. Does this mean that many respondent's doctors are unaware of the NICE guidelines? They are not supposed to be - awareness of NICE guidelines is obligatory for doctors. Or could it be that many respondents were unaware that the NICE guidelines only approve these 2 therapies? It would be interesting to know how informed PWME are about issues like this that have such a major impact on their medical treatment.
This report includes lots of data about the kind of help people want, treatments they want and who they want to provide it. This is no doubt valuable information, yet I cannot help thinking that if M.E. was taken as seriously as any other illnesses that caused the degree of disability seen, these questions would not even arise. The bottom line is - there are no treatments because the research has not been done to find the cause or causes which could result in real treatments. The exciting work happening at the WPI and other places may take some time to result in effective treatments. So while it is important to do the best thing to help patients who are clearly being failed on an incredible scale, surely the best thing for all concerned would be some major investment in research.
The most impressive and depressing thing about the MEA's survey, is that it shows with considerable gravitas the scale of the problems faced by PWME, poor standard of care and the lack of progress.
Peter Kemp
Download the survey at:
http://www.meassociation.org.uk/images/stories/2010_survey_report_lo-res.pdf
The ME Association is at:
Tel: 01280 827070 (between 9.30am and 4.30pm)
The ME Association
7 Apollo Office Court
Radclive Road
Gawcott
Bucks
MK18 4DF
The article originally appeared here.
blog comments powered by Disqus
Previous Page |
