It is difficult to convey fully the overwhelming effects of severe ME – on the patient or on carers.
We can only allude to the horrendous course that ME can take, point out at how little has been done to address this particular issue of ME, and state what we, as a charity, have been trying to do to change things.
The odds are stacked against carers if the person(s) they are caring for suffer from ME.
Carers have to pause their normal lives to try to come to grips with the effects of this disease on the patient, and on themselves.
Lack of understanding about the disease by the public – a great deal of which has been caused by misinformation from the media, media centres and compromised media editors - can even affect relationships.
If a carer/partner does not understand the illness or has been misinformed due to the media propaganda then subsequent strains on relationships can take its toll – thus further aggravating the situation for the patient.
Apart from having to research oneself what this disease is, and what treatments there may (or may not) be, a carer/parent may suddenly be met, not with compassion or understanding, but with the full force of social services intervening and suddenly becoming victim to the ignorance that pervades society.
The other insidious effects of ME that the patient experiences – such as isolation – can also come into play for carers.
Gradually the loneliness and isolation of the patient may cast its ever increasing shadow over the carer.
