Severe ME Ignorance Must End...

Like Jill Stratton my heart sank too when I saw the media headlines over the last fortnight, saying that fear of exercise exacerbates ME/CFS, basically insinuating that ME sufferers need to try and get out of bed if they want to get better.  For more detail click on the link below to her fantastic article in The Guardian on line.

As someone with first hand experience of the living hell that is Severe ME I was furious at this irresponsible reporting by most of the media and my heart went out to the patients, carers and their families who were forced to watch this media feeding frenzy over some questionable latest research from Kings, questionable in my mind because it did not include any Severe ME patients, not 1 of the 60,000 Severe ME patients that are right here, on their doorstep in the UK.  Why aren't they included in research studies like this?  Because they are too physically disabled to take part, thats why of course!

And why do I feel so furious about it...because I know that the one thing every Severe ME patient longs for is to get out of bed.  The problem is they can't.  Their Mitochondria (the energy producing power stations inside cells inside muscles) are wholly unable to produce the energy they need to lift one spoonful of food to their mouths let alone get them out of bed.

Yet again, researchers pay no attention to the differences between mild/moderate ME patients and Severe ME patients.  Not that I am saying that their findings are correct for mild/moderate ME patients either...all ME patients have an excess of desire to do exercise, but a total physical disability from doing that exercise.  Anyhow, in the hope that maybe one, just one, of those irresponsible journalists will perhaps do some better desk research themselves the next time yet another useless research study is published, I am going to publish my Chapter on The Different Levels of ME from my Information Pack right here...

Chapter 1: The Different Levels of M.E.

Every illness affects people differently, affecting some severely, some more mildly…you only have to think of think of Cancer, Heart Disease, Multiple Sclerosis.  Why is it then so difficult for people to understand that this range and degree of illness also occurs in M.E.

People diagnosed with Cancer, Heart Disease, MS receive so much compassion and understanding from people…and rightly so…but why do people affected by Severe M.E. not receive that same level of support when they too are suffering?” 

S. Dutton
Carer of Severe M.E. Patient

The National Institute for Health and Clinical Excellence (NICE) categorises the different levels of M.E. as follows (source NICE Clinical Guideline 53, August 2007):


·         People with Mild CFS/ME are mobile, can take care of themselves and do light domestic tasks with difficulty.  Most are still working or in education but to do this they have probably stopped all leisure and social pursuits, and often take days off.

·         People with Moderate CFS/ME have reduced mobility and are restricted in all activities of  daily living, although they may have peaks and troughs in their level of symptoms and ability to do activities.  They have usually stopped work or education and need rest periods.  Their sleep at night is generally poor quality and disturbed.

·         People with Severe CFS/ME are unable to do any activity for themselves, or can carry out minimal daily tasks only (such as face washing, cleaning teeth).  They have Severe cognitive difficulties and depend on a wheelchair for mobility.  They are often unable to leave the house, or have a Severe and prolonged after-effect if they do so.  They may also spend most of their time in bed, and are often extremely sensitive to light and noise.’

Having been very severely affected I agree with those who believe that the ‘Severe’ category needs to be broken down further, into Severe M.E. and ‘Very Severe M.E.’.  It is vital that people understand that a Very Severely affected Patient is TOTALLY DEPENDENT upon their carer(s). 

So below is an excerpt from Diane L Cox’s book Occupational Therapy and Chronic Fatigue Syndrome, which explains the levels of ability in ME/CFS Patients very clearly:
Levels of Ability

Patients with ME/CFS can present with a wide range of symptoms and levels of ability.  For ease of identifying the type of management approach required, the patients referred to the hospital are divided into four levels of ability.  The levels were devised so that each patient is categorized dependent upon level of fatigue, daily activity level and general mobility (Cox, 1998; Cox and Findley, 1998):

·         Mild                 (Grade 1)                               
·         Moderate         (Grade 2)
·         Severe              (Grade 3)
·         Very Severe     (Grade 4)

The patients in the mild category will be mobile and self-caring and able to manage light domestic and work tasks with extreme difficulty.  The majority will still be working.  However, in order to remain in work they will have stopped all leisure and social pursuits, often taking days off.  Most will use the weekend to rest in order to cope with the week.

The patients in the moderate category will have reduced mobility and be extremely restricted in all activities of daily living, often having peaks and troughs of ability, dependent on the degree of symptoms.  The patients in this group have usually stopped work and require many rest periods, often sleeping in the afternoon for one to two hours.  Sleep quality at night is generally poor and disturbed.  This level appears to be the group most cited in the description of studies and CFS services (Cox and Findley, 1994; Wilson et al., 1994b; Sharpe et al., 1996; Vercoulen et al., 1996; Deale et al., 1997; Fulcher and White, 1997).

The patients in the severe category will be able to carry out minimal daily tasks only, such as face washing and cleaning teeth, have severe cognitive difficulties and be wheelchair dependent for mobility.  These patients are often unable to leave the house except on rare occasions with a severe prolonged after-effect from effort.

The patients in the very severe category will be unable to mobilise or carry out any daily task for themselves and are bed-bound for the majority of the time.  These patients are often unable to tolerate any noise, and are generally extremely sensitive to light.’

                                                       Occupational Therapy and Chronic Fatigue Syndrome,
 (Page 80-81) by Diane L Cox

 As you can see, the difference between the levels is huge, just as in any illness. 

Perhaps the reason that Severe M.E. and Very Severe M.E. are so poorly understood is that mainstream media mostly concentrates on Patients with Mild/Moderate M.E., the ‘walking wounded’, who are able to be interviewed, are seen by people up and about on their good days, and are able to attend out Patient clinics.

Whereas those who are Severely* affected do indeed become ‘invisible’; left bed-bound, little more than breathing corpses, they cannot speak for themselves to explain to the World what this illness is really like; they cannot access appropriate specialist medical care, because both in-Patient and domiciliary care is still scarce; and they cannot be included in the research studies because, they are too physically disabled to take part. 

(* As you read this pack, please bear in mind that for conciseness sake, whenever I use the term ‘Severe M.E.’, I am indeed including within that term Very Severe M.E. Patients too.)

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