Chester Clinic

 

Me-foreningen.info

Managing my M.E.
What people with ME/CFS
and their carers want
from the UK's health and
THE RESULTS OF THE ME ASSOCIATION'S MAJOR
SURVEY OF ILLNESS MANAGEMENT REQUIREMENTS
Published by The ME Association, May 2010
OUR AMBITION?
A comprehensive management programme
welcomed by the vast majority of people with
ME/CFS – and an NHS willing to embrace it
During a period of over four months, which ended in September 2008, The ME Association
conducted a comprehensive questionnaire survey involving all aspects of ME/CFS
management. A paper version of the questionnaire was sent out to ME Association
members in our ME Essential magazine. An on-line version was made available to a
much wider audience through the MEA website.
Overall, 4,217 people took part – making this the largest ever survey of patient and carer evidence on issues relating to ME/CFS management. A total of 3,494 people took part using the on-line version. Another 723 completed the paper version. Almost all of those completing the paper version (97%) were members of The ME Association. Most people who completed the on-line version (77%) were non-members.
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. There was a separate section for carers.
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 results of the survey are set out in detail in this report. A preliminary report was sent to the All Party Parliamentary Group on ME to assist them with their Inquiry into NHS Service Provision and part of the final MEA report has been inserted into the APPG report. The information in this final report will form an important part of our submission to NICE when, as is scheduled for later in 2010, they review their current guideline on ME/CFS. If we are going to send patient evidence to NICE that presents alternatives to CBT and GET, then we require good quality evidence on the use of these approaches, and the more acceptable alternatives, upon which to base our case. So the aim will be to use all this information to develop a comprehensive MEA management programme that would be welcomed by the vast majority of people with ME/CFS. This will also offer a real challenge to some of the unpopular recommendations contained in the Funding for this research came from The ME Association's Ramsay Research Fund.
The ME Association wishes to thank co-opted trustee Janet Thomas for devising the questionnaire
and Dr John Bottone FORS for doing the statistical analysis.
Dr Charles Shepherd wrote the discussion segments that accompany the results to each question.
A more detailed statistical analysis of the results, including cross-referencing, has also been
carried out. These results can be obtained as a separate summary, which is available on request
from The ME Association.
This report has also been made available for open access at The ME Association website:
www.meassociation.org.uk The ME Association, 2010
Section for people with ME/CFS
Question 1
Are you a member of The ME Association?
MEA member?
Overall, only 37% were members. Of the respondents to the online questionnaire, the majority (77%) were not members – whereas for the print version, Answered question:
distributed with our ME Essential magazine, the majority (97%) were members.
Question 2
Where do you live?
Which area of the country do you live in?
England (SE)
In terms of regional population statistics, respondents in England (Midlands)
England (SW)
Scotland, Wales and the Midlands are under-represented in this England (NW)
England (NE)
Elsewhere
Scotland (S & Mid)
England (E)
Question 3
England (S)
What is your age?
Wales (S)
Ireland (N)
Scotland (Highlands) 2%
Research evidence from published epidemiological studies Wales (N)
indicates that most people with ME/CFS are between 20 and England (W)
50, certainly at the start of their illness. This is similar to the findings reported here. However, the percentage in the 51-60 age group in The ME Association survey is significantly higher than reported in research evidence. The fact that those answering the printed version were older may reflect the prob- ability that people using The ME Association website are more likely to be newly diagnosed and patient support charities have a membership that is biased towards people who have become more chronic or severely affected and are therefore older. The ME Association survey under-estimated the number of children and adolescents with ME/CFS. This is probably because The ME Association does not focus on this age range and there are two separate charities that do. Children and adolescents are obviously less likely to be using a medical charity website, although their parents may well be doing so.
Printed Form
5-10 years
5-10 years
5-10 years
11-20 years
11-20 years
11-20 years
21-35 years
21-35 years
21-35 years
36-50 years
36-50 years
36-50 years
51-65 years
51-65 years
51-65 years
66+ years
66+ years
66+ years
Question 4
What is your gender?
In line with all the current epidemiological evidence, the sur- vey found a significantly higher proportion of female suffer- ers – which may be partly explained by various predisposing vulnerabilities. Research studies suggest a female:male ratio of around 70:30. The 78:22 split in The ME Association survey might reflect an increased willingness by females to engage with this type of survey and be members of a patient support group.
Questions 4 and 5
Age breakdown by Gender
There was very little difference between the age ranges of the female and male respondents. Age breakdown by Gender

Percent Number Percent Number
5 - 10 years
11-20 years
21-35 years
35-50 years
51-65 years
Question 5
Has the diagnosis of ME/CFS been confirmed?
Confirmed diagnosis?
Yes
88% of respondents had had their diagnosis confirmed.
Answered question:
Question 6
Who made the diagnosis of your illness as ME/CFS?
Who diagnosed?
Doctor
82% of diagnoses were made by a doctor.
Other person 15%
Yourself
therapist
Question 7
Indicate the duration of your illness from the onset of
How long ill?
Less than a year 8%
2-5 years
The majority of respondents had been ill for more than 10 years. So the results of this survey are significantly biased towards 6-10 years
people with experience of a more long-term chronic illness and More than 10 years
may not adequately reflect experiences and problems relating to the early stages of ME/CFS.
Question 8
How long did it take to reach a diagnosis in your case?
Time to diagnosis
Less than 6 months
Delay in making a diagnosis of ME/CFS is a major issue that has been highlighted in both the 2002 Chief Medical Officer's 6-12 months
report into ME/CFS and the 2005 report from the ME Alliance: ME Diagnosis – Delay Harms Health. The latter report found More than a year
that around 25% of adults were diagnosed within six months; 22% were diagnosed between six months and a year; and 53% took over a year to get a diagnosis. The figures in this survey indicate that many people still face an unacceptable delay when it comes to obtaining an early and accurate diagnosis along with appropriate forms of management.
We currently have no sound research evidence relating to the proportion of people who fit into the approximate definitions of mild, moderate or severe ME/CFS. It has been widely suggested that around 25% of people have a severe form of ME/ CFS at some stage in their il ness. The figure of 15% in a severe category in The ME Association survey is likely to be an under-estimate given the fact that people with severe ME/CFS may have found the completion of the lengthy questionnaire to be difficult or impossible – even though it could have been completed in stages.
Question 9
Effect of illness
How does the illness affect your current state of
on health
The majority of respondents were "moderately" affected by their Moderately
Severely
Question 10
There are five symptoms commonly associated with
ME/CFS. Tick these symptoms in the order of severity
for yourself (ie grade them).
Muscle Fatigue was ranked as the sympton that affected respondents the most. This was followed by cognitive dysfunction, then pain, then sleep problems. The least troublesome was mobility problems.
Eighteen people said they had none of the key features of ME/CFS. This suggests that they either do not have ME/CFS or had recovered, or they had misunderstood the question.
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.
Cognitive dysfunction refers to problems with short-term memory, concentration, information processing and attention Your five most severe symptoms
1st 2nd 3rd 4th 5th Rating Average
Muscle Fatigue 1730 815 457 248 85 0.771
Cognitive Dysfunction 548 956 836 679 277 0.596
Pain (esp in muscles & joints) 504 737 771 775 357 0.539
Sleep Problems 461 617 893 842 507 0.537
Mobility Problems 197 278 385 577 1519 0.330
None of these apply 18 3 4 6 51 0.010
Answered Question: 3594
Question 11 (see table on opposite page)
This question presented a list of other common
symptoms found in ME/CFS. Respondents were asked
to select all that had ever applied to them – choosing
whether they were a ‘major' or a ‘minor' problem.
All respondents listed more than 66% of these symptoms as either major or minor problems and most reported more than These results are again very much in line with what we already know about what are often termed ‘secondary symptoms'. A finding of 70% experiencing pain emphasises the fact that pain, although often occurring in ME/CFS, is not always The most common symptoms – were they MAJOR or MINOR to you?
Major problem Minor problem Rating average of combined
Major and Minor
Feeling tired on waking up
Feeling ill for several days
after minor exertion
General malaise that varies
through day
Poor concentration and
short-term memory
Muscle pain
Severe muscle weakness
after minor exertion
Inability to cope with temperature
changes (or night sweats)
Aching joints without swelling
or redness
Increased sensitivity to light
and/or sound
Problems remembering names
of people and objects
Headaches of type not
previously experienced
Irritable bowel problems
Dizziness or feeling faint on
standing (postural hypotension)
Problems with balance
Recurrent sore throats and
enlarged glands
Sleeping in the day rather
than at night
Alcohol intolerance
Sensory changes, eg tingling or
abnormal skin sensations
Twitching of muscles or eyelids
New allergies
Difficulty in finding way about
Answered Question: 3663
Questions 12 and 13
Have you been told
There were two questions about mental health. One
asked whether respondents had been told that their
your ME/CFS is
ME/CFS was a psychological illness. The other asked
respondents if they had been diagnosed with any of
three mental health problems as part of their illness.
A diagnosis of depression, anxiety, panic attacks or mood swings had been given to between 72% and 86% of respondents. These were equally described as a ‘major' or ‘minor' problem. The figures here are higher than previous reporting but may reflect the wording of the question which referred to whether a doctor had made a diagnosis of a mental health problem. Unfortunately, we are still in a situation where some doctors still regard ME/CFS as a form of atypical depression or anxiety and diagnose it as such.
Any mental health diagnosis as part of your illness?
Major problem Minor problem Rating Average
Depression
Anxiety and/
or panic attacks 38%
Mood swings or
emotional lability 37%
Answered Question: 2477
Questions 14 – 16
These questions were about the effect of general therapies on the illness.
Respondents were invited to answer questions for any they had tried.
When looking at the techniques that made respondents slightly worse or much worse, Graded Exercise Therapy was specified by 56%, followed by physiotherapy, the drug modafinil, yoga and physiotherapy. It appears that any "physical" type of therapy has the potential to make many patients worse. Lightning Process made 20% worse. Cognitive Behaviour Therapy only made 19% worse, but it also produced ‘no change' in 54%.
The fact that pacing is rated very strongly as the most effective form of management is consistent with several other surveys of patient opinion and a large amount of anecdotal feedback. The findings relating to the two very controversial treatments recommended by the National Institute for Health and Clinical Excellence (NICE) – ie cognitive behaviour treatment (CBT) and graded exercise therapy (GET) – are again in line with previous surveys of patient opinion, which have found CBT to be ineffective in a high proportion of people (55% in the MEA survey; 67% in the Chief Medical Officer's report) and GET to be unhelpful (21% in the MEA survey; 15% in the CMO's report) or even harmful (in around 50% of cases in both the MEA survey and the CMO's report).
Results relating to other forms of treatment, where the survey numbers involved may be small and assessment in properly controlled clinical trials is either poor or non-existent, obviously have to be viewed with considerable caution. However, it is interesting to note that some of the more popular drugs and supplements used by people with ME/CFS – eg carnitine, evening primrose oil, and Imunovir – end up in the bottom half of this table.
8 Affects on symptoms of 25 therapies tried by respondents –
sorted by the percentage of people who IMPROVED
Total oved
eatly impr
No change Slightly worse Much worse impr
2137 11.6% 59.6% 24.1% 3.5% 1.2% 71.2% MEDITATION OR RELAXATION
TECHNIQUES
1675 6.1% 47.6% 44.3% PERRIN TECHNIQUE
115 13.9% 37.4% 37.4% ALLERGY TREATMENTS 686 9.5% 41.7% 45.2% 2.2% 1.5% 51.2%
OSTEOPATHY/
774 9.8% 41.1% 33.3% 10.1% 5.7% 50.9% 1037 5.4% 43.9% 31.3% 12.7% 6.7% 49.3% LIGHTNING PROCESS
101 25.7% 18.8% 34.7% 7.9% 12.9% 44.6% eg HYDROCORTISONE
323 10.5% 32.5% 35.3% 10.8% 10.8% 43.0% ADVICE (to help
2147 3.3% 39.5% 50.9% 3.7% 2.6% 42.8% 275 4.0% 37.5% 32.0% 13.5% 13.1% 41.5% THYROXINE
414 8.7% 30.4% 50.0% 812 4.2% 34.9% 32.9% 20.8% 7.3% 39.0% 81 14.8% 22.2% 33.3% 16.0% 13.6% 37.0% (EPA) OMEGA 3 OIL
1217 3.2% 33.1% 59.7% 2.9% 1.1% 36.3% VITAMINS AND
SUPPLEMENTS
2370 3.7% 31.9% 61.9% 1.8% 0.8% 35.5% L CARNITINE
318 2.8% 28.0% 62.9% 3.8% 2.5% 30.8% 862 3.5% 27.0% 36.7% 17.2% 15.7% 30.5% REVERSE THERAPY
107 8.4% 21.5% 45.8% 16.8% 7.5% 29.9% HOMEOPATHY
1100 5.5% 24.4% 59.9% 7.1% 3.2% 29.8% (other than CBT)
984 2.6% 26.8% 60.1% 6.1% 4.4% 29.5% EVENING PRIMROSE OIL 1231 2.6% 25.8% 66.3% 3.7% 1.5% 28.4%
COGNITIVE BEHAVIOUR
THERAPY (CBT)
997 2.8% 23.1% 54.6% 11.6% 7.9% 25.9% IMUNOVIR
62 8.1% 17.7% 50.0% 16.1% 8.1% 25.8% THERAPY (GET)
906 3.4% 18.7% 21.4% 23.4% 33.1% 22.1% ENADA/NADH
358 3.4% 16.5% 63.4% 12.3% 4.5% 19.8% Affects on symptoms of 25 therapies tried by respondents –
sorted by the percentage of people who were made WORSE
eatly impr
No change Slightly worse Much worse worse
THERAPY (GET)
906 3.4% 18.7% 21.4% 23.4% 33.1% 56.5% 862 3.5% 27.0% 36.7% 17.2% 15.7% 32.8% 81 14.8% 22.2% 33.3% 16.0% 13.6% 29.6% 812 4.2% 34.9% 32.9% 20.8% 7.3% 28.1% 275 4.0% 37.5% 32.0% 13.5% 13.1% 26.5% REVERSE THERAPY
107 8.4% 21.5% 45.8% 16.8% 7.5% 24.3% IMUNOVIR
62 8.1% 17.7% 50.0% 16.1% 8.1% 24.2% eg HYDROCORTISONE
323 10.5% 32.5% 35.3% 10.8% 10.8% 21.7% LIGHTNING PROCESS
101 25.7% 18.8% 34.7% 7.9% 12.9% 20.8% THERAPY (CBT)
997 2.8% 23.1% 54.6% 11.6% 7.9% 19.6% 1037 5.4% 43.9% 31.3% 12.7% 6.7% 19.4% ENADA/NADH
358 3.4% 16.5% 63.4% 12.3% 4.5% 16.8% 774 9.8% 41.1% 33.3% 10.1% 5.7% 15.8% PERRIN TECHNIQUE
115 13.9% 37.4% 37.4% THYROXINE
414 8.7% 30.4% 50.0% (other than CBT)
984 2.6% 26.8% 60.1% 6.1% 4.4% 10.5% HOMEOPATHY
1100 5.5% 24.4% 59.9% 7.1% 3.2% 10.3% L CARNITINE
318 2.8% 28.0% 62.9% 3.8% 2.5% 6.3% ADVICE (to help
2147 3.3% 39.5% 50.9% 3.7% 2.6% 6.3% EVENING PRIMROSE OIL 1231 2.6% 25.8% 66.3% 3.7% 1.5% 5.4%
PACING
2137 11.6% 59.6% 24.1% 3.5% 1.2% 4.7% (EPA) OMEGA 3 OIL
1217 3.2% 33.1% 59.7% 2.9% 1.1% 3.9% ALLERGY TREATMENTS 686 9.5% 41.7% 45.2% 2.2% 1.5% 3.6%
VITAMINS AND
SUPPLEMENTS
2370 3.7% 31.9% 61.9% 1.8% 0.8% 2.5% MEDITATION OR RELAXATION
TECHNIQUES
1675 6.1% 47.6% 44.3% Acceptability
Of the therapies that caused the most improvement, the top six were all satisfactory for 78% to
89% of respondents. The most unacceptable were Graded Exercise Therapy (53%), Reverse Therapy (47%), Lightning Process (41%), the drug modafinil (38%), Cognitive Behavioural Therapy (38%} and Physiotherapy (37%).
Responses Satisfactory Not acceptable
PACING 2047 88% 12%
MEDITATION OR
RELAXATION TECHNIQUES 1525 89% 11%
PERRIN TECHNIQUE 107 78% 22%
ALLERGY TREATMENTS 646 79% 21%
OSTEOPATHY / CHIROPRACTIC 720 80% 20%
MASSAGE 987 83% 17%
LIGHTING PROCESS 106 59% 41%
CORTICOSTEROID,
eg HYDROCORTISONE 293 66% 34%
ADVICE (to help me to cope) 2090
HYDROTHERAPY 261 69% 31%
THYROXINE 383 82% 18%
YOGA 743 78% 22%
MODAFINIL / PROVIGIL 73 62% 38%
EICOSAPENTAENOIC ACID
(EPA) Omega 3 oil 1075 87% 13%
VITAMINS AND SUPPLEMENTS 2081 82% 18%
L CARNITINE 276 84% 16%
PHYSIOTHERAPY 818 63% 37%
REVERSE THERAPY 102 53% 47%
HOMEOPATHY 1014
COUNSELLING
(other than CBT)
EVENING PRIMROSE OIL
- Omega 6 oil
COGNITIVE BEHAVIOUR
THERAPY
INOSINE PRANOBEX / IMUNOVIR 54 74% 26%
GRADED EXERCISE THERAPY 888 47% 53%
ENADA/NADH 322 65% 35%
Where carried out
Of the six techniques that caused the most improvement, pacing and meditation/relaxation
techniques were mostly done at home, Perrin Technique and osteopathy/chiropractic were mostly done at a private clinic whereas allergy treatments and massage were mostly done at either home or at a private clinic.
Graded Exercise Therapy was carried out at a specialist ME centre, at a local hospital or at home and Cognitive Behaviour Therapy was carried out at either a specialist ME centre or at a local hospital. GP surgeries were mostly used for drug therapies, advice, allergy treatments and for counselling.
Where carried out
surgery Local
Responses Specialist
ME centr At home
MEDITATION OR
RELAXATION TECHNIQUES 1496
PERRIN TECHNIQUE
ALLERGY TREATMENTS
OSTEOPATHY /
CHIROPRACTIC
LIGHTNING PROCESS
eg HYDROCORTISONE
(to help me to cope)
THYROXINE
EICOSAPENTAENOIC ACID
(EPA) Omega 3 oil
VITAMINS AND
SUPPLEMENTS
L CARNITINE
REVERSE THERAPY
HOMEOPATHY
COUNSELLING
(other than CBT)
EVENING PRIMROSE OIL
- Omega 6 oil
COGNITIVE BEHAVIOUR
INOSINE PRANOBEX /
IMUNOVIR
GRADED EXERCISE
ENADA/NADH
27.2% 0.3% 3.6% Advice and Supply
AENOIC ACID
A) Omega 3 oil
AMINS AND
S Source of Source of advice and supply
MEDIT RELAXA
CORTICOSTEROID, eg HYDROCORTISONE
ADVICE (to help me to cope)
L CARNITINE
COUNSELLING (other than CBT)
EVENING PRIMROSE OIL - Omega 6 oil
INOSINE PRANOBEX / IMUNOVIR
GRADED EXERCISE THERAPY ENADA
Question 17
Respondents were asked to rate nine therapies for pain. They were asked questions
about their treatment experience for any they had used.
Effect on Symptoms The best response was to opiate analgesics (63%). NSAIDS, aspirin, paracetamol and acupuncture all helped around 50% of respondents. Amitytriptyline, pregabalin and gabapentin all made around 30% of respondents worse. Aspirin and paracetamol had the fewest adverse effects (3%).
Pain can be a major problem with ME/CFS and may involve muscles, joints and/or nerves (‘neuropathic pain'). Most doctors prescribe pain relief in a step-like fashion, starting with simple over-the-counter painkillers such as paracetamol or NSAIDs (non-steroidal anti-inflammatory drugs) such as ibuprofen/Brufen.
This process progresses through the use of prescription-only drugs, including low-dose amitriptyline, and then possibly trying approaches such as gabapentin/Neurontin or pregabalin/ Lyrica for more severe pain. It is interesting to note that, while around 38% reported good or moderate responses to gabapentin and pregabalin, around 28% felt these drugs had made them feel worse. The use of morphine-containing (opiate) drugs is normally restricted by doctors to severe or terminal pain and, while it is not surprising to find that these drugs are rated as very effective by people with ME/CFS, the significant dangers of using stronger opiate drugs have to be very carefully balanced against the possible benefits. It was disturbing to find the very low rating given for pain relief clinics – something that may reflect the inexperience of staff involved in dealing with ME/CFS.
The ME Association has a leaflet providing detailed information on the management of all aspects of pain relief.
Sorted according to the percentage of those who
reported a good or moderate effect
Responses Good ModeratePoor No changeWorse Good//moderate
Drug - opiate analgesics (eg tramadol) 618 20% 43% 8% 12% 16% 63%
Drug - NSAIDS (eg. ibuprofen/Brufen) 1612 8% 45% 14% 23% 11% 53%
Drug - aspirin or paracetamol
2045 5% 43% 18% 31% 3% 48% Acupuncture
1036 16% 32% 5% 34% 13% 48% Drug - amitriptyline
1196 11% 31% 9% 19% 31% 41% 521 7% 33% 11% 35% 15% 40% Drug - pregabalin/Lyrica
146 16% 22% 10% 23% 29% 38% Drug - gabapentin/Neurontin
248 11% 27% 11% 25% 27% 38% Referal to a pain clinic
338 8% 25% 9% 45% 13% 33% Sorted according to the percentage of those who
reported feeling worse
ResponsesGood Moderate Poor
Drug - amitriptyline
1196 11% 31% 9% 19% 31% Drug - pregabalin/Lyrica
146 16% 22% 10% 23% 29% Drug - gabapentin/Neurontin
248 11% 27% 11% 25% 27% Drug - opiate analgesics (eg tramadol) 618 20% 43% 8% 12% 16%
521 7% 33% 11% 35% 15% Referal to a pain clinic
338 8% 25% 9% 45% 13% Acupuncture
1036 16% 32% 5% 34% 13% Drug - NSAIDS (eg. ibuprofen/Brufen) 1612 8% 45% 14% 23% 11%
Drug - aspirin or paracetamol
2045 5% 43% 18% 31% 3% Responses SatisfactoryNot acceptable
Drug - opiate analgesics (eg. tramadol) 566 71% 29%
Drug - NSAIDS (eg. ibuprofen/Brufen) 1463 69% 31%
Drug - aspirin or paracetamol
Acupuncture
Drug - amitriptyline
Drug - pregabalin/Lyrica
Drug - gabapentin/Neurontin
Referal to a pain clinic
Where Carried Out
Comp health
surgeryLocal
ME centrAt homeGP
Drug - opiate analgesics (eg. tramadol) 556 1% 45% 41% 11% 2%
Drug - NSAIDS (eg. ibuprofen/Brufen) 1428 1% 74% 23% 2% 1%
Drug - aspirin or paracetamol
1822 1% 80% 18% 1% 0% Acupuncture
958 1% 4% 9% 12% 74% Drug - amitriptyline
1110 4% 37% 48% 9% 1% 481 1% 75% 3% 16% 5% Drug - pregabalin/Lyrica
130 3% 33% 23% 30% 11% Drug - gabapentin/Neurontin
211 10% 41% 27% 19% 3% Referal to a pain clinic
316 5% 1% 3% 84% 7% Question 17 contd
therapist Occupational physician General therapist Alt/comp 1674 947 1098 438 124 Advice and Supply
S Source of
Drug - opiate analgesics (eg. tramadol) Drug - NSAIDS (eg. ibuprofen/Brufen) Drug - aspirin or paracetamol Acupuncture Drug - amitriptyline TENS Drug - pregabalin/L Drug - gabapentin/ Neurontin Referal to a pain clinic
Question 18
Respondents were asked to rate five therapies for sleep. They were asked
questions about their treatment experience for any they had used.
Effect on Symptoms Nearly 60% of respondents had a good response to short-acting sleeping drugs and to relaxation techniques. There was a less beneficial response to amitriptyline, melatonin and sleep hygiene advice. Amitriptyline also made the symptoms worse in 27% of respondents. Doctors, quite rightly, take a cautious approach to the use of drugs in any form of sleep disturbance. But where simple sleep hygiene measures fail, the use of short-acting hypnotics such as zopiclone/Zimovane (for initiating sleep), or a low dose of amitriptyline (for generally disturbed sleep), or melatonin (for more severe disturbance in sleep pattern) is worth considering. The results here suggest that all three approaches can sometimes be helpful – where appropriate.
The ME Association has a leaflet providing detailed information on all aspects of management of sleep disturbance, including the use of melatonin.
Sorted according to the percentage of those who
reported a good or moderate effect
Drug - short acting sleeping tablets
(eg. zaleplon/Sonata, zolpidem/Stilnoct,
755 23.2% 35.0% 10.3% 14.4% 17.1% 58.1% Relaxation techniques
1582 10.8% 47.0% 9.5% 31.8% 0.9% 57.8% Drug - amitriptyline (low dose)
1122 13.1% 30.4% 10.7% 18.4% 27.5% 43.5% Drug - melatonin
391 17.4% 24.8% 7.9% 36.8% 13.0% 42.2% Sleep hygiene advice
687 5.5% 30.6% 11.5% 47.6% 4.8% 36.1% Sorted according to the percentage of those who
reported feeling worse
ResponsesGood Moderate Poor
No change Worse
Drug - amitriptyline (low dose)
1122 13.1% 30.4% 10.7% 18.4% 27.5% Drug - short acting sleeping tablets
(eg. zaleplon/Sonata, zolpidem/Stilnoct,
755 23.2% 35.0% 10.3% 14.4% 17.1% Drug - melatonin
391 17.4% 24.8% 7.9% 36.8% 13.0% Sleep hygiene advice
687 5.5% 30.6% 11.5% 47.6% 4.8% Relaxation techniques
1582 10.8% 47.0% 9.5% 31.8% 0.9% Responses SatisfactoryNot acceptable
Drug - short acting sleeping tablets
(eg. zaleplon/Sonata, zolpidem/Stilnoct,
Relaxation techniques
Drug - amitriptyline (low dose)
Drug - melatonin
Sleep hygiene advice
Where Carried Out
Comp health
surgeryLocal
At homeGP
Drug - short acting sleeping tablets
(eg. zaleplon/Sonata, zolpidem/Stilnoct,
696 2.7% 54.0% 37.8% 3.2% 2.3% Relaxation techniques
1436 7.9% 74.6% 1.5% 6.6% 9.4% Drug - amitriptyline (low dose)
1032 4.6% 46.5% 38.9% 8.4% 1.6% Drug - melatonin
347 5.8% 73.8% 8.4% 4.6% 7.5% Sleep hygiene advice
604 19.4% 54.1% 10.4% 12.6% 3.5% SSource of Advice and Supply
Drug - short acting
sleeping tablets
(eg. zaleplon/Sonata,
therapistOther therapist 705 0.1% 2.4% 3.5% 0.0% 7.0% 76.0% 0.4% 0.4% 0.4% 0.3% 1.7% 0.0% 6.5% 0.3% 0.9% 0.0% Relaxation techniques 1369 17.7% 0.9% 2.0% 4.4% 1.3% 4.3% 2.8% 3.1% 11.2% 7.6% 1.4% 4.0% 1.4% 4.0% 33.5% 0.3%
Drug - amitriptyline
(low dose)
1030 0.0% 9.3% 2.7% 0.1% 10.2% 70.4% 1.0% 0.2% 1.0% 0.9% 0.2% 0.4% 3.1% 0.0% 0.6% 0.0% Drug - melatonin
342 6.7% 6.4% 1.8% 0.3% 11.4% 10.8% 2.0% 0.9% 0.6% 0.6% 21.9% 0.3% 18.1% 0.3% 17.8% 0.0% Sleep hygiene advice 608 2.8% 3.5% 2.1% 2.6% 6.7% 18.3% 5.1% 3.5% 13.7% 5.6% 0.5% 3.6% 5.3% 4.6% 21.9% 0.3%
Question 19
Respondents were asked to rate six therapies for depression. They were asked
questions about their treatment experience for any they had used.
Effect on SymptomsSSRI antidepressants, cognitive behaviour therapy (CBT), venlaxafine and tricyclic antidepressants were used by 35% to 40% of respondents. Monoamine oxidase inhibitors were less effective. However, SSRI antidepressants, venlaxafine, tricyclic antidepressants and monoamine oxidase inhibitors also made 30% to 38% worse.
Estimates of the incidence of true clinical depression in ME/CFS vary considerably but, when depression occurs, it may be due to a combination of both internal factors (ie changes in brain chemical transmitters) and external factors (ie problems with coping, benefits, doctors, employment, etc). The choice of antidepressant therapy should, to some extent, be related to ME/CFS symptoms – because some of the symptoms of ME/CFS can be very similar to side- effects of antidepressant drugs. Overall, the SSRIs (selection serotinin reuptake inhibitors – drugs that increase the level of serotonin in the brain) were preferred to the older tricyclic group of drugs in this survey. The less frequently used MAOI (monoamine oxidase inhibitors) drugs came last. The results also indicate that CBT and St John's Wort (the herb hypericum) can both be helpful in some cases for managing co-existent depression. The ME Association has a leaflet that provides detailed information on all aspects of managing depression.
Sorted according to the percentage of those who
reported a good or moderate effect
Drug - SSRI antidepressants
(eg. citalopram/Cipramil,
fluoxetine/Prozac, paroxetine/Seroxat, Responses Good
No change
1529 13.0% 27.9% 8.7% 20.3% 30.0% 40.9% Cognitive behavioural therapy (CBT) 686 12.2% 27.1% 7.7% 38.6% 14.3% 39.4%
Drug - venlafaxine/Efexor
276 13.8% 22.8% 8.0% 16.7% 38.8% 36.6% Drug - tricyclic antidepressants
(eg. full dose amitriptyline,
imipramine, dothiepin/Prothiaden)
715 9.5% 26.2% 10.2% 18.3% 35.8% 35.7% Herb - St John's Wort
668 6.0% 22.5% 8.5% 50.0% 13.0% 28.4% Drug - monoamine oxidative inhibitor
antidepressants (eg. phenelzine/
Nardil, moclobemide/Manerix)
165 6.7% 16.4% 9.7% 29.7% 37.6% 23.0% Drug - short acting
sleeping tablets
(eg. zaleplon/Sonata,
705 0.1% 2.4% 3.5% 0.0% 7.0% 76.0% 0.4% 0.4% 0.4% 0.3% 1.7% 0.0% 6.5% 0.3% 0.9% 0.0% Relaxation techniques 1369 17.7% 0.9% 2.0% 4.4% 1.3% 4.3% 2.8% 3.1% 11.2% 7.6% 1.4% 4.0% 1.4% 4.0% 33.5% 0.3%
Drug - amitriptyline
(low dose)
1030 0.0% 9.3% 2.7% 0.1% 10.2% 70.4% 1.0% 0.2% 1.0% 0.9% 0.2% 0.4% 3.1% 0.0% 0.6% 0.0% Drug - melatonin
342 6.7% 6.4% 1.8% 0.3% 11.4% 10.8% 2.0% 0.9% 0.6% 0.6% 21.9% 0.3% 18.1% 0.3% 17.8% 0.0% Sleep hygiene advice 608 2.8% 3.5% 2.1% 2.6% 6.7% 18.3% 5.1% 3.5% 13.7% 5.6% 0.5% 3.6% 5.3% 4.6% 21.9% 0.3%
Sorted according to the percentage of those who
reported feeling worse
ResponsesGood Moderate Poor
Drug - venlafaxine/Efexor
276 14% 23% 8% 17% 39% Drug - monoamine oxidative inhibitor
antidepressants (eg. phenelzine/Nardil,
165 7% 16% 10% 30% 38% Drug - tricyclic antidepressants (eg. full dose
amitriptyline, imipramine, dothiepin/Prothiaden) 715 10% 26% 10% 18% 36%
Drug - SSRI antidepressants (eg. citalopram/
Seroxat, sertraline/Lustral)
1529 13% 28% 9% 20% 30% Cognitive behavioural therapy (CBT)
686 12% 27% 8% 39% 14% Drug - SSRI antidepressants
(eg. citalopram/Cipramil, fluoxetine/
Responses SatisfactoryNot acceptable
Lustral)
Cognitive behavioural therapy (CBT)
Drug - venlafaxine/Efexor
Drug - tricyclic antidepressants (eg. full
dose amitriptyline, imipramine,
Herb - St John's Wort
Drug - monoamine oxidative inhibitor
antidepressants (eg. phenelzine/Nardil,
Where Carried Out
Drug - SSRI antidepressants
(eg. citalopram/Cipramil, fluoxetine/
surgeryLocal Comp health
Prozac, paroxetine/Seroxat,
At homeGP
Cognitive behavioural therapy (CBT) 634 19% 15% 13% 37% 16%
Drug - venlafaxine/Efexor
Drug - tricyclic antidepressants
(eg. full dose amitriptyline,
imipramine, dothiepin/Prothiaden)
Herb - St John's Wort
Drug - monoamine oxidative
inhibitor antidepressants
(eg. phenelzine/Nardil,
moclobemide/Manerix) 143 5%
Question 19 contd
therapist Occupational physician General therapist Alt/comp Advice and Supply
Source of
Drug - SSRI antidepressants (eg. citalopram/Cipramil, fluoxetine/Prozac, paroxetine/Seroxat, sertraline/Lustral) Cognitive behavioural therapy (CBT) Drug - venlafaxine/ Efexor Drug - tricyclic antidepressants (eg. full dose amitriptyline, imipramine, dothiepin/ Prothiaden) Herb - St John's W Drug - monoamine oxidative inhibitor antidepressants (eg. phenelzine/Nardil, moclobemide/Manerix)
Question 20
Respondents were asked to rate four therapies for bowel problems. They were
asked questions about their treatment experience for any they had used.
Effect on Symptoms 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.
Symptoms of irritable bowel syndrome (IBS) – abdominal pain, bloating, changes in bowel habit – are very common in ME/CFS and were reported by just over 50% of respondents in this survey. Drug management should be symptom-related (ie antispasmodics for pain; bulk laxatives for constipation) and there are a number of other drug approaches that can be very effective. Dietary modification and food sensitivity avoidance is also a well accepted form of management that can sometimes be very helpful. As has been found elsewhere, some people with IBS are very sensitive to dietary change that involves increasing fibre – so this has to be carried out slowly and with care. Although not asked about in the questionnaire, it is extremely important that anyone with ME/CFS and IBS-type symptoms has a screening test for coeliac disease. This is because some of the symptoms of ME/CFS and coeliac disease overlap.
The ME Association has a leaflet that provides detailed information on all aspects of management of IBS-type symptoms, including screening for coeliac disease, and an additional leaflet on dietary approaches to IBS.
Sorted according to the percentage of those who
reported a good or moderate effect
Responses Good ModeratePoor
No changeWorse Good//moderate
Dietary modification
1599 23.1% 45.8% 7.8% 21.1% 2.1% 69.0% Drug - antispasmodic
(eg. mebeverine/Colofac, peppermint
812 17.5% 41.0% 11.0% 23.4% 7.1% 58.5% Bulk laxatives (eg. Fybogel, Isogel) 709 12.1% 40.6% 11.0% 20.2% 16.1% 52.8%
Increased dietary fibre intake
914 11.2% 36.4% 8.6% 27.2% 16.5% 47.6% Source of Advice and Supply
Drug - antispasmodic
(eg. mebeverine/Colofac, ResponsesAlt/comp
Colpermin)
722 1.5% 0.6% 0.1% 0.0% 8.2% 71.1% 0.0% 0.1% 0.0% 0.6% 9.6% 0.0% 1.4% 0.1% 6.8% 0.0% (eg. Fybogel, Isogel)
641 2.2% 0.5% 0.3% 0.2% 8.6% 64.6% 0.3% 1.1% 0.0% 1.1% 14.4% 0.0% 1.4% 0.0% 5.5% 0.0% Increased dietary
fibre intake
725 9.1% 0.4% 0.0% 0.0% 5.4% 22.5% 1.5% 1.5% 0.7% 3.4% 11.0% 0.3% 3.3% 0.0% 40.8% 0.0% Dietary modification
1323 20.9% 0.5% 0.3% 0.0% 5.5% 13.3% 2.1% 1.0% 0.8% 6.7% 4.2% 0.2% 7.3% 0.1% 37.2% 0.0% Sorted according to the percentage of those who
reported feeling worse
ResponsesGood Moderate Poor
Increased dietary fibre intake
914 11.2% 36.4% 8.6% 27.2% 16.5% Bulk laxatives (eg. Fybogel, Isogel)
709 12.1% 40.6% 11.0% 20.2% 16.1% Drug - antispasmodic (eg. mebeverine/
Colofac, peppermint oil/Colpermin)
812 17.5% 41.0% 11.0% 23.4% 7.1% Dietary modification
1599 23.1% 45.8% 7.8% 21.1% 2.1% Responses SatisfactoryNot acceptable
Dietary modification
Drug - antispasmodic (eg. mebeverine/
Colofac, peppermint oil/Colpermin)
Bulk laxatives (eg. Fybogel, Isogel)
Increased dietary fibre intake
Where Carried Out
Comp health
surgeryLocal
At homeGP
Dietary modification
1465 2.1% 82.0% 3.5% 4.4% 7.8% Drug - antispasmodic (eg. mebeverine/
Colofac, peppermint oil/Colpermin)
739 0.8% 60.2% 34.1% 4.2% 0.7% Bulk laxatives (eg. Fybogel, Isogel)
649 0.9% 67.8% 25.9% 5.1% 0.3% Increased dietary fibre intake
809 1.2% 88.5% 5.6% 3.0% 1.7% Source of Advice and Supply
Drug - antispasmodic
(eg. mebeverine/Colofac,
therapistOther therapist PsychologistSelf-help book worker Colpermin)
722 1.5% 0.6% 0.1% 0.0% 8.2% 71.1% 0.0% 0.1% 0.0% 0.6% 9.6% 0.0% 1.4% 0.1% 6.8% 0.0% (eg. Fybogel, Isogel)
641 2.2% 0.5% 0.3% 0.2% 8.6% 64.6% 0.3% 1.1% 0.0% 1.1% 14.4% 0.0% 1.4% 0.0% 5.5% 0.0% Increased dietary
fibre intake
725 9.1% 0.4% 0.0% 0.0% 5.4% 22.5% 1.5% 1.5% 0.7% 3.4% 11.0% 0.3% 3.3% 0.0% 40.8% 0.0% Dietary modification
1323 20.9% 0.5% 0.3% 0.0% 5.5% 13.3% 2.1% 1.0% 0.8% 6.7% 4.2% 0.2% 7.3% 0.1% 37.2% 0.0% Questions 21 and 22
Respondents were asked whether there were any other treatments that they had
found to be either helpful or unhelpful.
These were two open questions which allowed respondents to list their own choices.
Helpful treatments not already asked about in the questionnaire – with 30 or more mentions – were: acupuncture, antibiotics, Co-enzyme Q10, D-ribose, healing, herbal remedies, magnesium supplements, probiotics, reflexology, reiki and Vitamin B12.
Unhelpful treatments not already asked about in the questionnaire – with 15 or more mentions – were: acupuncture, Alexander Technique, antiobiotics, aromatherapy, healing, herbal remedies, kinesiology, magnesium and reflexology.
With such small numbers, it is difficult to draw any firm conclusions. It is not surprising to note that several treatments that were found to be helpful by some were found to be unhelpful by others – a finding that is consistent with an illness where there is a wide variation in individual responses to almost any form of treatment.
A complete electronic list of these responses can be supplied by The ME Association on request.
Question 23
Rate current standard
How would you rate your current standard of medical
of medical care
The results – along with the answers to Questions 24 and 25 Not receiving any
– are very disappointing. Overall, they indicate that knowledge about ME/CFS diagnosis and management among doctors and other health professionals is still seriously lacking. Equally disturbing is the finding that around 22% of people had Very poor
apparently opted out of receiving medical care from conventional Excellent
NHS sources – presumably because their doctor was either unsympathetic or felt unable to offer any meaningful management advice.
Question 24
Is your doctor well
Do you think that your medical adviser is well enough
enough informed about
informed about the diagnosis of ME/CFS?
diagnosis of ME/CFS?
No
Answered question:
Question 25
Is your doctor sufficient-
Do you think that your medical adviser is sufficiently
ly aware of the range of
aware of the range of therapies available for ME/CFS?
therapies available?
No
Questions 26 to 28
In relation to your own illness, which of the aspects of management do you feel
would be both helpful and acceptable and should therefore form part of a general
management programme that The ME Association subsequently recommends for
widespread use within the NHS?
Pacing and activity/energy management
Alternative
therapies
Counselling (other than CBT)
Cognitive Behavioural Therapy (CBT)
Graded Exercise Therapy (GET)
Answered question: 3099
Sources of assistance to do with help available in the community
Help with benefits
employment
Help with provision of social care (eg. home helps)
Help with disability and mobility aids
education 45.7%
Answered question: 2289
Therapies to do with specific symptom areas
Help with sleep problems
Help with pain control
Help with stress management
Help with depression
Help with bowel symptoms
Help with other symptoms
Answered question: 3113
Question 29
Who would you like to co-ordinate the management of your illness?
The GP, followed by a combination of GP and consultant physician, was the most preferred for co-ordination. A psychologist or psychiatrist was the least preferred.
The answers given to Questions 29-32 are fully consistent with ME Association policy, which is to recommend that multidisciplinary hospital-based referral services should be easily accessible throughout the whole of the UK and that a physician should be in overall charge of the service. The reality is that there are stil significant parts of the UK where there are no services at al – especially in Northern Ireland, Scotland and Wales. Elsewhere there is a disturbing trend towards setting up services that are not physician-led. Similar points were made in the recent report from the All Party Parliamentary Group on ME Inquiry into NHS service provision. The lack of services for people with ME/CFS is currently the subject of political and medical initiatives in both Wales and Scotland, where The ME Association is playing an active role in the consultation and Extra suggestions regarding people who should be involved in the co-ordination of management included the patients themselves, a domicilary nurse with good knowledge of ME and anyone who is local, sympathetic and has extensive and current knowledge of the illness. Overall, the strongly expressed view was that whoever co-ordinated management, it was essential that they were empathetic to the effects of ME/CFS on the patient and that their knowledge of ME was both extensive and current.
Who would you like to co-ordinate the management of your illness?
Ist Choice2nd Choice3rd Choice Mixture of GP & Consultant Physician
751 382 196 0.35 Mixture of GP & Practice Nurse
270 330 287 0.19 Consultant Physician
291 272 182 0.17 Neurologist
Nurse Specialist
An alternative medicine therapist
144 201 321 0.12 Occupational Therapist
None of these 169
Practice Nurse
Question 30
Where do you think that future management should be co-ordinated for the majority
of the time?
The first choice was at a specialist ME centre, closely followed by a GP surgery. A local NHS
hospital was third. The additional comments from people inferred that this question was being interpreted as asking about where people with ME/CFS should be treated as well as where their treatment should be co-ordinated. There were some very strong adverse comments about the way in which the current ME/CFS referral clinics operate, especially where the approach to management appears to be heavily influenced by the psychosocial model of ME/CFS.
Extra suggestions about where people thought management of their illness should take place included a centre also offering complementary medicine and a local GP surgery. A domiciliary (home visiting) service and a telephone and internet helpline were also mentioned. Where should management be co-ordinated most of the time?
Ist Choice 2nd Choice3rd ChoiceRating A Specialist ME Centre
Primary Care ie. GP surgery
1177 1125 562 0.67 Local NHS Hospital
Other Centre
Question 31
Which health professionals and organisations do you want to be involved?
The GP was most favoured, then a consultant physician. A neurologist, a GP nurse, a dietician/ nutritionist, an alternative medicine therapist, an occupational therapist, a counsellor and physiotherapist all were moderately favoured. A psychiatrist was least favoured.
Extra suggestions included an ME specialist, an ME nurse specialist, an immunologist, an endocrinologist and a support worker (presumably dealing with benefits, social services, etc).
Which health professionals and organisations do you want to be involved?
Ist Choice2nd Choice3rd Choice4th Choice 5th Choice6th ChoiceRating A 1502 662 313 108 69 73 0.77 Consultant Physician
627 621 344 126 94 84 0.48 Neurologist
367 337 296 173 97 93 0.32 70 449 295 228 150 157 0.27 Dietician / Nutritionalist
37 145 295 362 378 350 0.23 Alternative medicine therapist
124 165 227 292 274 205 0.22 Occupational Therapist
62 147 244 239 225 154 0.18 Counsellor
30 106 238 317 267 221 0.18 26 78 181 245 203 126 0.14 CBT Therapist
22 51 110 107 134 97 0.08 20 56 103 111 91 98 0.08 117 19 24 14 9 36 0.05 15 36 47 55 41 47 0.04 Question 32
What sort of approach to management would you prefer?
Individual sessions with doctors and other health professionals was most favoured. This was
followed by a mixture of individual and group sessions. Group sessions alone were the least favoured option.
Extra suggestions for approaches to management included a preference for one-to-one sessions, and the need for home visits, internet and home support. Group sessions were rated poorly by a number of people who felt they could be difficult to get to. They then had further difficulty in coping with all the information being given out during what can be quite long sessions.
What sort of approach to management would you prefer?
Ist Choice2nd Choice3rd Choice Individual sessions with
doctors and other health professionals 2027 466 203 0.76
A mixture of both
Group sessions where a specific topic –
eg. diet, pacing, sleep, etc – is covered in
a series of presentations and discussions 104 637 1129 0.29
Section for Carers
Question 1
Number of significant
How many significant carers are involved with this
carers are involved
70% of patients only had one significant carer, 19% had two and 7% had three. Only 4% had more than three.
More than 3
Answered question: 896
Question 2
Are any of you members of The ME Association?
MEA members
Only 18% of patients had a carer who was a member of The ME Answered question: 892
Question 3
Hours of care required
Approximately how many hours each week is care from
each week
all sources required?
Less than 10 hrs 24%
24% of Patients required less than 10 hours per week and the proportion generally decreased as more time was required. However, 27% of patients required virtually full time care, ie more than 40 hours per week.
Virtually full-time 27%
Answered question: 878
Question 4
What are the relationship(s) between
you, the carers and the person that you
look after?
Other family member
48% of patients were cared for by their spouse/partner and 80% of care came from Social Service based
within the family. Only 6% came from either Professional Carer (agency) 3% 29
social services or professional sources.
Neighbour
Answered question: 1118
Question 6
What are the main roles required?
Help with daily living activities, shopping and accompanying to appointments was required by 91%, 86% and 78% of patients respectively. 60% required help with mobility outside the house. Fewer required help with personal care, mobility in the house or in other ways.
What are the main roles required?
Care with daily living activities (eg. cooking , cleaning)
Shopping and running errands
Accompanying to appointments 78%
Helping with mobility outside the house
Help with personal care (eg. washing, dressing, feeding)
Helping with mobility in the house
Answered question: 880
Question 7
As a carer, which of these options do you think would help you to provide better
care for the person you look after?
Care with daily living activities, shopping and accompanying to appointments was required by 91%, 86% and 78% of patients respectively. 60% required help with mobility outside the house. Which options would help provide better care for your patient?
Information about ME/CFS 58%
Advice about benefits available
Visiting counsellor
Carers' support group
A visiting Occupational Therapist (OT) 32%
Access to hydrotherapy (physiotherapy in a warm pool) 31% 249
Advice about mobility aids 29%
Transport to specialist centres etc
Respite care facility 23%
Training in patient handling etc
Answered question: 799
Further help required by carers
It is clear that carers require much more information about issues
such as benefits, care options, respite care, etc. The ME Association
publishes a wide range of leaflets covering all the main DWP benefits,
along with social care, etc.
In the comment section, which allowed for additional observations to be made, carers listed items of both direct help for the carer and help for the patient that they felt would lead to improvements in their situation.
The most commonly requested forms of direct help related to:l help in the home/gardenl help with filling in benefit formsl increased public awareness of ME/CFSl availability of pre-booked and emergency respite carel greater financial benefitsl a local referral centre with a transport serviceThe most commonly requested forms of help for the person being cared l medical support from empathetic personnel who are experienced in ME/CFS management l better medical carel regular GP visitsl wider range of approved NHS therapies, including alternative therapies l better access to ME specialistsl educational help for younger patientsA full electronic list of these comments can be obtained from The ME Published by The ME Association, 7 Apollo Office Court, Radclive Road,
Gawcott, Buckinghamshire MK18 4DF.
Tel: 01280 818964 Email: [email protected]
Registered Charity Number 801279

Source: http://www.me-foreningen.info/wp-content/uploads/2016/09/2010-survey-report-lo-res.pdf