Somebody help ME! They should not be the forgotten ones.

 

 International Awareness Day CFS/ME 

                                         By Pam F with additional material from Dr Sue Davies

 

Today,  12th May 2011, is marked by being International Awareness Day for CFS/ME.  There are many child sufferers with this condition, many of whom seldom leave their homes.  It is by far the most common reason for long term absence from school.  It is our intention today to present information to those who are unaware of this condition,  and experiences from the  various viewpoints, of educationalists, sufferers and their carers.  

Labour’s policy is that Everyone Matters, and indeed it is surely our responsibility to ensure that children suffering from this condition achieve the very best chance of recovery,  have access to education and enjoy the best of life opportunities possible. It is not acceptable to turn a blind eye,  and allow these individuals to be forgotten.  Cuts to support services for vulnerable children across the country put these and other vulnerable children at risk.  In seeking re-election,  Labour must demonstrate that it  is the Party which cares about every citizen,  young and old. 

Labour’s policy should aim  to: 

• Ensure all professionals are well trained and informed 

• Ensure suitable educational provision is in place to suit the needs and health of the child. 

• Encourage flexibility of provision  

• Provide free on–line learning and home tutoring or school support as appropriate,  with access to library resources 

• Ensure development of specialist teams within the NHS  in all areas of the UK who can provide support to children and their families,  and to educationalists with in order to aid recovery. 

• Schools should liaise closely with the health professionals and home tutors to ensure continuity of education,  and  they should be prepared to be flexible especially if reintegration back to school is deemed appropriate 

Introduction 

What is ME, and how does it affect children?  

It is extreme debilitating fatigue, often pain and cognitive dysfunction which affects many children and is referred to by a number of terms: 

Myalgic Encephalomyelitis  or Encephalopathy   (ME) 

Post Viral Fatigue Syndrome  (PVFS) 

Chronic Fatigue Syndrome (CFS) 

Chronic Fatigue – Immune Dysfunction Syndrome  (CFIDS) 

Awareness of this condition varies considerably, with many still doubting the physical nature of the illness because of newspaper headlines of 'Yuppie Flu'.   Being doubted  makes the whole experience doubly difficult for a child. 

1. Example of a typical viewpoint of teacher in school   

“We never see her.  We sent work home, but it’s never finished.  I don’t think she can do any GCSEs because all of our students started in Year 9 to do their GCSEs,  and it’s too late now.  We can’t do part-time because it doesn’t fit in with our timetabling. ” 

2. Typical experience of a home tutor supporting a child 

“School have been really helpful and sent work home.  It’s difficult for him to focus on this work on his own.  I find he is only able to work for 20 minutes or so. 

We try and concentrate on the important points, but he find in some subjects really tiring, and I can tell he’s had too much.  I try to keep lessons stress-free.  He really struggles with coursework deadlines, and homework.  

Pacing is important,  and we work closely with the hospital, and the CFS/ME  team 

Support to aid re-inclusion back into school which we find helpful 

• Part-time timetable, maybe trying late morning 
• Transport to and from school 
• Excuse from P.E. or games 
• Flexibility of timetables 
• Information to all staff about pupil’s needs  
• Provision of rest areas 
• Exam concessions, sitting exams at home if necessary 
• Flexibility of deadlines 
• Try to keep in contact with tutor groups 
• Avoid classes with stairs 
• Consider lunchtimes, go home, increase gradually, social contact, avoid queuing” 

3. Ideas from specialist teams: 

The paediatric CFS/ME research team based at Bristol University and has  run projects looking at: 

• The Epidemiology of CFS/ME in children 
• Prognosis and outcome of children with CFS/ME 
• Impact of CFS/ME on families 
• The prevalence of undiagnosed CFS/ME in children 
• Predictors of fatigue and CFS/ME in the Avon and Longitudinal 
• Study of Parents and Children (ALSPAC) as well as other projects. 

Dr Esther Crawley was the first to publish that CFS/ME exists in children under 12;  that children with CFS/ME don’t go to school because they are unwell not anxious and that young people with CFS/ME have significant problems with memory and concentration.   

However awareness varies greatly around the country and within the NHS.  Investment in this area is crucial to ensure country-wide quality  effective support. 

4. From Somebody Help ME (Jill I Moss) 

Typical carer of 20 year old 

“I’ve tried everything – alternative treatments, diets.  Everyone seems to have heard of some weird remedy or another and you feel you have to try it.  I’d feel I wasn’t trying hard enough otherwise.  The trouble is, that the more treatments we try, the more hopeless it seems.  I’m then left feeling guilty for raising her hopes.” 

5. Parent’s  Story 

"I have had to stop work to look after her."  "The doctors/teachers  seem to think that I have some crazy emotional investment  in my child being ill."  "I daren't think about a time when he gets better … I've had my hopes raised too many times before."  "My marriage broke up because of the stress."  "I feel so helpless and guilty that I can't make her better." 

6. A young woman’s account 

  "I'm 25.... still living at home … no job, no degree... I go out with friends about once every six  weeks and then lie on the settee for the next week, too ill to do anything."  "I don't know if I will ever get better   … there are so many things that I wanted to do with my life.... and it is all just passing me by." 

Conclusion 

Despite the need for support from specialists teams, and despite comments in the press that front-line services are being protected by the policies of the Coalition government,  the reality is that much specialist provision is being cut around the country. , In January,  there were protests from Cambridgeshire families and children, and this is just one example.   

Labour’s health and education inclusive policies must ensure that the 250,000 sufferers of CFS/ME children and adults are not forgotten,  and that it is communicated through both  policy documents and through the media,  that for the Labour Party, “Everyone Matters”. 

To those with ME/CFS Labour must say that “We have not forgotten you”....  and we will commit government money into much needed research into this debilitating and often serious condition. 

References and documents: 

1. Cuts in Cambridge to EOTAS provision 

http://www.cambridgefirst.co.uk/news/angry_families_protest_against_cambridgeshire_school_cuts_1_769380 

2. Somebody help ME, Jill I Moss  

A self help guide for young sufferers from Myalgic Encephalomyelitis , and their families. 

3. Pacing for people with M.E (Action for ME) 

4. Severe ME/CFS A Guide to Living: by Emily Collingridge