Shropshire & Wrekin ME Support

Statistics - August 2012

 

Total membership                              149     

Members with ME/CFS/PVFS           124 = 85 Female + 39 Male               Female: Male ratio = 2.2:1

 

[N.B.   Not all analysis figures add to 124 where insufficient data was supplied]

 

53 members are also members of national ME organisations

Total numbers in each organisation

 

ME Association (MEA)

33

 

Action for ME (AfME)

28

 

Association of Young people ME (AYME)

10

 

The Young ME Sufferers Trust (TYMES)

2


The 25% Group (for the severely affected)

7


 

Numbers with only SMEG membership

 

96




Numbers with two of the above memberships in addition to Shropshire ME Group

 

21




 

Current Age of ME sufferers (Number/10-year band)

 

<10

10<20

20<30

30<40

40<50

50<60

60<70

70<80

80<90

>90

No data

Total

Female

-

1

4

9

9

23

26

8

4

-

1

85

Male

-

-

6

3

4

8

10

6

-

-

2

39

Total

-

1

10

12

13

31

36

14

4

 

3

124

Youngest         Female = 22.2 years   Male = 22.2 years      

Oldest             Female = 86.3 years   Male = 79.8

Average ages  Female = 56.6 years   Male = 54.2 years       M+F = 55.8 years

 

N.B. SMEG figures may be distorted due to very few younger children having joined the Group in recent years.

Could it be that local school welfare officers, GPs and paediatricians are not considering ME as a diagnosis?

Date of ME onset ~ Number of cases per year

1937

1

1980

4

1990

5

2000

8

 

1940

1

1981

2

1991

4

2001

4

 

1950

1

1982

-

1992

2

2002

7

 

1956

1

1983

2

1993

3

2003

3

 

1957

1

1984

-

1994

4

2004

2

 

1959

1

1985

4

1995

4

2005

2

 

1964

1

1986

3

1996

9

2006

1

 

1970

2

1987

7

1997

5

2007

5

 

1971

1

1988

1

1998

4

2008

1

 

1974

1

1989

2

1999

4

2009

3

 

1978

1

 

 

 

 

2010

1

No data       3

1979

2

 

 

 

 

2011

1

 

Pre 1980

14

1980s

25

1990s

44

2000+

38

Total = 124

N.B. These figures only represent those who have joined and remained with SMEG, so do not fully represent epidemiology in the region. It appears that in recent years those who join with a diagnosis of CFS tend to leave after one or two years, whereas those with long-term ME have remained in the Group.

2



Length of illness (years)             

 

85 Females

39 Males

All

Range

1.5 – 75.0

1.3 – 72.5

 

No data

1

3

 

Average length

20.1

20.2

20.1

 

Length of illness before joining Shropshire ME Group

2 members joined within 1 year of developing ME; 13 in 1- 2 years; 14 in 2-3 years; 9 in 3-4 years and 9 in 4- 5 years. A further 26 joined us within 10 years; 21 more within 20 years. 17 did not find us for over 20 (up to 65) years after first becoming ill. No data was available for 4 members. (Total = 124)

Obviously many members' illness predates the formation of Shropshire ME Self-help Group in autumn 1987. Also a number have transferred to S&WMES or Shropshire ME Group after moving into the county. Quite a number suffered from ME for several years before getting a definite diagnosis, and still too many don't get to hear about us until several years into their illness. Often ME sufferers take several months after first making contact before they decide to join the Group and a number who make contact do not subsequently join the Shropshire ME Group.

 


 

Among SMEG members females were most vulnerable in mid puberty and between 45-50 years of age; boys at puberty and men at 35-45.


3

Length of Shropshire ME Group Membership

Number who joined during each year of the Group’s existence.

[N.B.We were Shropshire ME Self Help Group until May 1998 and Shropshire & Wrekin ME Support until June 2007.]

Year

number

Year

number

Year

number

Year

number

1988

4

1995

4

2002

9

2009

7

1989

-

1996

6

2003

6

2010

9

1990

3

1997

1

2004

8

2011

7

1991

2

1998

4

2005

5

2012

4

1992

2

1999

3

2006

9

No data

2

1993

5

2000

3

2007

3

Total

124

1994

 3

2001

6

2008

9

 

 

 

Diagnosis

Chronic Fatigue Syndrome (CFS)

14

 

ME/CFS

10

Myalgic Encephalomyelitis (ME)

84

 

ME + FMS

7

Postviral Fatigue Syndrome (PVFS)

1

 

ME + PVFS

2

Fibromyalgia (FMS)

-

 

CFS & FMS

1

ME + Rheumatoid Arthritis +CFS

-

 

Epstein Barr

1

ME + Multiple Chemical Sensitivity

1

 

No diagnosis listed

3

 

Length of wait for diagnosis

immediate

-

 

5 months

4

 

12 months

9

 

5 years

3

 

10-19 years

6

<1 month

2

 

6 months

12

 

<18 months

10

 

6 years

2

 

20-24 years

6

2 months

3

 

7 months

-

 

24-30 months

9

 

7 years

1

 

>30 /many years

6

3 months

4

 

8 months

2

 

3 years

1

 

8 years

5

 

No data

28

4 months

-

 

9 months

4

 

4 years

5

 

9 years

2

 

Total

124

 

Clearly there is considerable variation in the length of time taken to reach a diagnosis. Surprisingly there was no correlation between waiting times and when illness started, with no wait at 42 years of illness and those with 2- 3 months to diagnosis having illness for 8 to 30 years! Diagnostic skills evidently need some work.

 

Employment before ME started

Education staff

23

 

Civil servant

5

Student/school pupil

20

 

Consultancy/legal

1

Health care Service worker

9

 

Librarian

2

Secretary/clerical

2

 

Technical

7

Housewife/carer

4

 

Retired

3

Manual work

6

 

Accountancy/finance

7

Admin/management

10

 

Hairdressers

1

Agriculture/horticulture

9

 

No answer

3

Self employed/Own business

5

 

Never able to work

-

Sales/marketing

7

 

Total

124

4

Effects of illness on education  & employment –124 members

 

20 were students/school pupils at ME onset

 

Current situation

Incapacity

Benefit

Income Support

Disability

Living Allowance.

Student/

pupil

Housewife/ homemaker

 

Retired

No data

Had to give up education

17

9*

5*

4*

2 p/t

-

1 Age ret,

1 Med. ret

1

Stayed in education

2

 

1

-

 

1

 

 

Not stated

1

1

 

 

 

 

 

 

* Includes 1on IS+DLA, 1 on IS+ICB & 2 on ICB+DLA                        Current age range = 17.7 to 68.1 years                                                        

114 members not undergoing education at time of ME onset

Current Job/Benefit etc

Those who had to give up work

 

Mother/House-wife when ME struck

Those not forced to give up work

Not stated if lost job thro’ ME

Total

Age retired

29

1

1

 

31

Already retired

-

 

2

 

2

Homemaker

6

2

3

 

11

Incapacity benefit

32

 

1

 

33

Income Support

9

 

 

 

9

Attendance Allowance

1

 

 

 

1

Disability Living Allowance

15

 

 

 

15

Medically retired

19

 

 

 

19

ESA work related

4

 

 

 

4

ESA support (high)

3

 

 

 

3

New job Full time

1

 

1

 

2

New job Part time

3

 

 

 

3

Old job Full time

-

 

1

 

1

Old job Part time

2

 

5

 

7

Self employed Part time

4

 

2

 

6

Sick pay

1

 

1

 

2

Unemployed

1

 

 

 

1

No data

1

 

 

2

2

 

* N.B. more than one category applies to some individuals, so totals will add to more than 114.

The 9 now on income support (and probably others who would qualify but do not claim it) gives an indication of the very low incomes received by many who were forced to give up their careers due to ME/CFS. At the time of completing their forms only seven had faced the new Employment Support Allowance hurdle and of these only three receives full benefit on health grounds. This may have affected more by now and is likely to affect many more in the future as ICB is phased out.

 5

 

Effects of ME on Mobility

 

Most members who completed this section rated their mobility on a % scale:

0%= bed-bound, 100% = no mobility problems

 

%

No.of

cases

Same as last year

Improved

Worse

No comp data

 

Improvements in mobility

Only 6 reported better mobility since last year ranging from

10% to 25% (Ave. = +16%)

improvement

 

Deteriorations in mobility

9 since last year ranged from

5% to 25% worsening (Average = -14%)

 

Comments

Variable (2)

0-9

7

5

 

1

1

10-19

3

1

 

1

1

20-29

10

9

 

1

 

30-39

11

8

1

2

 

40-49

16

10

1

2

3

50-59

29

21

1

2

5

60-69

16

14

1

 

1

70-79

10

6

2

 

2

80-89

4

3

 

 

1

90-99

3

1

 

 

2

100

1

1

 

 

 

No % given

14

 

 

 

14

Totals

124

78

6

9

30

 

Disability Living Allowance applications and Awards

 

Another measure of mobility/disability problems can be assessed by the applications for Disability Living Allowance. This benefit is not dependent on National Insurance contributions, but on the assessor’s perception of the needs of the applicant. For many it is a major contribution to total income. E.g. High rate mobility allowance plus lowest rate home care (one of the most commonly awarded combinations) is currently worth £74.60 per week.

 

74/134 members have made at least one application for DLA. Of these 43 have made at least one appeal against unfavourable decisions. 56 members with ME have never made an application. 4 supplied no data.

Current results are shown below.

 

Home Care Component

Mobility Component

First time success

Success after appeal(s)

Total awards to date

Summary

6 receive high rate home care

15 middle rate home care       

22 low rate home care            

 

33 receive high rate mobility   

5 receive low rate mobility

 

68 members made at least 1 application for DLA.

Only 8/40 who appealed were entirely unsuccessful and 1 result is pending, so for most it is certainly worth the not inconsiderable effort.

But 8 unsuccessful applicants did not bother to appeal and many more deserving cases may not have applied because of the stress involved.

High

+ High

1

1

2

Middle

+ High

2

10

12

Low

+ High

4

9

13

none

+ High

2

4

6

High

+ Low

2

1

3

Middle

+ Low

1

1

2

Low

+ Low

-

-

-

none

+ Low

-

-

-

High

+ none

1

-

1

Middle

+ none

-

1

1

Low

+ none

4

5

9

Pending

Pending

1

1

2

none

none

 

 

18(8 appeals)

 

Total successes

17

32

49

 

The high proportion of successful appeals (32/40 =80%) suggests that there is a problem with the initial adjudication process, and/or the application forms. It also shows that it is worth persevering with applications/appeals despite the inevitable exacerbation of symptoms that this extra stress imposes.

 

N.B. It is best to seek help from your CAB or A4U (DIAL) when applying for DLA or making an appeal.

 6

 

DLA was introduced in 1990 and implemented in 1992 to help Disabled people meet higher costs of living and can make a considerable contribution to household income. Current rates (2012-13) are:

 Care component      

 Weekly rate

 Highest rate

 £77.45

 Middle rate

 £51.85

 Lowest rate

 £20.55

 

 Mobility component

 Weekly rate

 Higher rate

 £54.05

 Lower rate

 £20.55

So a person receiving higher rate Mobility and lowest rate Home Care (the most commonly awarded to SMEG members) is currently receiving £74.60 per week – a lot to lose under possible cuts.

 

The Treasury announced in the June 2010 Emergency Budget that 20% of DLA caseload and expenditure would be cut. The Government will rename the benefit (Personal Independence Payment‘) and introduce a new assessment from 2013 for all recipients – but also aims to deliver the Government proposal of cutting the amount of DLA available by 20%. The Care component will now be known as the ‗daily living component - there will only be two rates instead of the current three. How will this impact on people currently on low rate DLA? There will still be two rates for the mobility component. More frequent reassessments of entitlement will also be introduced

It remains to be seen how this will affect SMEG members. Details of proposals are available at http://www.dwp.gov.uk/docs/dla-reform-consultation-exec-summ.pdf 

[As this is part of general cost-cutting measures it is likely that fewer awards will be made.]

 

GPs’ Empathy and their Relationship with Members

 

85 GPs were named, representing 58 practice surgeries. 8 members failed to name their GP, 7 to name the practice.

 

How many ME patients do the doctors/surgeries see?

.Patients per

GP or practice

No. of GPs

named

Total patients

 

Practices

named

Total Patients

 

 

 

 

These figures cannot take account of those ME/CFS sufferers who have left SMEG or those with ME who have never joined, but they do suggest that most GPs come across very few ME/CFS patients, or maybe not be diagnosing them as such.

1

64

64

 

31

31

2

16

32

 

12

24

3

3

9

 

7

21

4

1

4

 

4

16

5

-

 

 

2

10

6

-

 

 

1

6

7

1

7

 

 

 

8

-

 

 

 

 

9

 

 

 

1

9

No data

 

8

 

 

7

Total

85

124

 

58

121

 

Most members rated their GP on a 6-point scale:-  0 = no empathy –> 5 = very empathetic.

The results were as follows:

 7

 


How

 members

rate their GPS
Points change

With

With

Patient

Aggregate

Rating

Named GPs

No. Patients

 

since 2009

Same GP

New GP

Total

points change

0

3 +2*

5

 

+3

1

 

1

 

1

5

5

 

+2

2

 

2

+4

2

13 +1*

15

 

+1

2

 

2

+2

3

22 +1*

24

 

=

92

1

93

-

4

22

32

 

-1

4

 

4

-4

5

32 +2*

39

 

-2

1

 

1

-2

no data

 

4

 

-3

-

 

-

--

 

 

124

 

 

 

No comparative Data*

 

 

21

 

        [ * GPs not named ]                                 

 

 

 

*= new members/ or no data supplied

 

These figures show no overall change  in rating since the previous year

1 member changed GP but rating remained the same as before.

 



 

Range of Ratings of 17 GPs with >1 patient [total = 31 patients]

 

 

Patients/GP

No of GPs

All the same

1 point difference

2 points difference

3 points difference

 

 

 

 

2

14

5

4

4

1

 

 

 

 

3

1

1

-

-

-

 

 

 

 

4

1

-

1

-

-

 

 

 

 

7

1

-

-

1

-

 

 

 






















 

Changes  in the average level of GPs empathy/understanding of ME :

 

Year >                

2000

2001

2002

2003

2004

2006

2007

2008

2009

2010

2011/12

Average

3.41

3.39

3.30

3.23

3.30

3.47

3.55

3.44

3.40

3.48

3.11

 

This measure is subjective and may represent the patients’ rapport with their GPs as much as their GPs’ knowledge (or lack) of ME – or sheer frustration at not making progress in their health. [* No data available for 2005.]

 

 

Where our members live

By County:

Bucks

1

Cheshire

2

Clwyd

1

Denbigh

-

E.Sussex

1

Essex

1

Kent

1

North Yorks

-

Notts

1

Powys

8

Shropshire

103

Staffordshire

2

Warwicks

1

W. Glamorgan

1

W. Midlands

1

Total =124

 

By Town/village for 103 Shropshire residents

Bridgnorth

8

Church Stretton

1

Craven Arms

6

Ellesmere

-

Ludlow

5

Market Drayton

2

Minsterley

2

Much Wenlock

1

Newport

2

Oswestry

8

Pontesbury

2

Shrewsbury

43

Telford

18

Wem

1

Whitchurch

2

 8

How 134 Members Learnt about Shropshire ME Group

Local press

15

GP/surgery

9

Action for ME

6

Local radio

5

Shrops Enablement Team

2

ME Association

12

Library

2

District nurse

-

Other support groups

5

Open meeting/publicity

4

Health visitor

1

SMEG member

11

Internet/website

14

Pharmacist

1

Family member

6

Local authority/health centres

3

Social Services

-

Friend

8

No data

18

NHS Direct/helpline

1

Fitness centre

1

 

Medical and Other Treatments tried by Members in 2010

 

This data was collated from a survey form completed by 40 members in 2010. No treatment survey has been completed by SMEG members since then. This is only a small sample so it is difficult to draw firm conclusions, although they may be compared with larger national surveys on SMEG website http://www.shropshiremegroup.org.uk/otherinfo.htm

See also http://curetogether.com/chronic%20fatigue%20syndrome/treatments/    “It is such a poorly understood condition that the treatments reported to help most are predominantly lifestyle changes, while the medical treatments are predominantly reported to produce negative effects. This would suggest that medicine today doesn’t know how to effectively treat CFS.” Here at CureTogether, 1,319 people have reported having Chronic Fatigue Syndrome, and 6,524 data points have been shared about symptoms experienced and treatments tried. So what really helps patients with CFS? Rest, dietary changes, and meditation take top spots in patient reports.”

 

The table on page 11 lists 26 treatments most often tried by SMEG members. It is notable that out of 341 treatment/therapy events listed only 37% (127/341) were initiated by NHS service providers (consultants, GPs and SET CFS/ME Service). The range of private services and complementary therapies tried, often at considerable expense, is an indication of the desperation felt by many ME sufferers because of ineffective treatment from the NHS. Several said they had ceased such treatments due to the financial costs. Others never see their GP due to poor response/inability to help.

 

The most commonly used and most effective approaches for SMEG members are PACING and REST, with 16/20 (80%) and 18/23 (78.3%) respectively reported improvement of symptoms and only 3/20 (1.5%) and 4/23 (1.7%) reporting no improvement of symptoms despite these approaches.

This contrasts with 3/10 (30%) reporting improvement from Cognitive Behavioural Therapy (CBT) with 5 showing no improvement and 2 made worse. Only 2/10 recorded improvement from Graded Exercise Therapy (GET), 1 no change and 6/10 (60%) were made worse by GET.

NB. CBT and GET are the “treatments of choice” favoured by many GPs and consultants, nationally and locally and are the treatments recommended in the September 2007 NICE Guidelines for mildly and moderately affected ME/CFS sufferers.

Counselling – a much cheaper option than CBT- helped 6/14 (43%) while 7 report no change.

 

The mixed picture from antidepressant treatment (2 improved, 1 no change and 6 made worse) reflects the generally poor tolerance of these (as with most other medication) except in the case of LOW-DOSE amitriptyline whose sedative, rather than antidepressant

 9

 

properties, are often found to be useful for improving sleep pattern and reducing muscle pain.

One member highlighted Yoga and Tai chi as by far the most effective treatments she had tried.

Other Treatments tried

In addition members commented on other treatments. (numbers in brackets if >1)

Improved by

Art therapy (2); B12 injections Gingko Biloba, cold baths (temporary relief), garlic tablets (2), Ginseng, Healing/prayer (2), herbal tea, hydrotherapy, immunoglobulin injections, Magnesium injections, Massage, Meditation; mindfulness, olive leaf extract, probiotics/live yoghurt (2), psychiatrist (not Wessely school),

 

No change from

“Healing”, ozone therapy.

 

Other comments: Many apparently useful treatments have no long-term effect.

 10

 

Treated/referred by: (N.B. maybe by >1  referral*)

Results reported

Therapy

No of treatments tried

Consultant

GP

S.E.T. CFS/ME Service

Private

Self

No data supplied

Imp-

roved

No change

worse

No result given

Cognitive Behavioural Therapy

10

1

5

-

1

1

2

3

5

2

-

Counselling

14

2

5

1

4

3

1

6

7

 

1

Graded Exercise Therapy

10

1

4

1

-

4

-

2

1

6

1

Pacing

20

3

5

6

-

14

1

16

3

-

1

Rest

23

2

5

5

-

12

1

18

4

-

1

S.E.T. CFS/ME Service

14

3

11

-

-

-

-

6

5

1

2

Acupuncture

12

-

1

1

10

-

-

7

2

3

-

Antidepressants (inc. amitryptiline)

(including low-dose amitriptyline)

17

3

14

-

-

-

-

6

4

5

2

Antifungals

6

-

3

-

4

-

-

4

1

1

-

Anti-inflammatory (incl. aspirin)

12

-

6

-

1

3

2

7

4

-

1

Aromatherapy

9

-

1

-

2

6

-

6

2

1

-

Chiropractic

9

-

1

-

7

-

1

4

4

 

1

Diet change

27

-

4

3

11

11

2

19

8

-

-

Evening Primrose Oil

16

-

4

-

7

4

1

6

9

1

-

Fish/Linseed Oils

19

-

-

-

8

11

1

8

10

-

1

Minerals/Vitamins

26

1

4

-

10

12

1

14

11

-

1

Homoeopathy

14

1

2

-

8

3

-

6

8

-

-

Kinesiology

5

-

1

-

3

1

-

1

4

-

-

Lightning Process

2

-

-

-

1

2

1

1

1

-

-

Nutrition Supplements

17

-

4

-

7

5

2

9

5

1

2

Osteopathy

8

-

-

5

2

1

1

6

2

-

 

Pain medication

17

2

14

-

1

1

1

10

5

1

1

Reflexology

4

-

1

-

3

-

1

-

4

-

-

Sleep Medication

(including low-dose amitriptyline)

21

1

11

-

5

2

1

12

5

1

3

Tai Chi

6

-

1

-

-

5

1

2

4

-

-

Yoga

3

 

-

-

-

1

5

1

2

-

-

1

Totals>

341

20

107

22

96

106

22

181

118

23

19














 

*N.B. Treatment referrals may be from more than one source, e.g. Consultant and GP or GP and self, etc. so referrals column totals may differ from numbers of patient treatments involved (column 1) which should equal the total of the results reported (last 4 columns).

 

11