The symptoms and severity of illness experienced by those with ME/CFS cover a staggeringly wide spectrum. Some people may work full-time and have relatively minor limitations while others can be completely bed-bound with multiple, severely incapacitating symptoms. In between are a range of symptoms which may be experienced by some with the illness but not others. How to deal with this when organising the group’s activities? Of course some things we do will, by their nature, not be accessible to all so we can’t “please all of the people all of the time” but here are some ways we try to cater for as many as possible.
If you have just been diagnosed with ME, or perhaps suspect you have the illness but have yet to receive a diagnosis, what you probably want the most is information, information, information. This is where we can help (see “information” section under “what we do”) and, for those who can use computers, our email group can be a great source of advice and experience from fellow members. You might be reluctant to join a group at this stage but it needn’t mean resigning yourself to being ill, merely accepting you are ill at the moment and could use some support and advice from those who understand your situation based on their own experience.
For those that can get out our socials, talks and therapies are a much-loved part of what we do. However of course we know that those who are more severely affected won’t be able to attend and to compensate for this we try to always make sound recordings of our talks and, whenever we can, purchase tapes/CDs of the current therapy. These are kept in our library and priority is given to loans to housebound members. Of our other activities we put a lot of emphasis on circulating information (delivered to members doors) or having it on tap when needed (e.g. by post from the library, benefits info also by email) and there is always at least one article in every issue of the newsletter specifically for the bed- or house-bound. We always make sure that any important decisions we have to make as a group can be voted on by post. We continually stress the potential severity of the illness when campaigning.
The 25% Group (national organisation for the housebound/bedbound)
Difficulty using computers?
We recognise that various cognitive symptoms can make computer use difficult or impossible for some people with ME and so now have an established scheme of “computer buddies”. The non-computer user can call one of our computer-user “buddies” and ask for small tasks such as checking a web address, printing out information or posting messages to our email group and relaying back any responses. The amount of work involved is negotiable between a person and their “buddy”.
Sensitivity to light of any sort is an issue for some, but fluorescent lights are particularly problematic for many. We try, wherever possible, to arrange meetings in places with natural light or at a time of day that lights are not needed, although of course this can be difficult when all other access requirements are taken into account. One of our founder members started a “Right to Light” campaign to raise awareness of the health problems that can be associated with this type of lighting and to oppose the government-intended phasing-out of incandescent bulbs.
Multiple Chemical Sensitivities?
Of course we can’t control the environment of the places we meet, but we do ask members not to wear scented products such as perfume, after-shave or essential oils when attending Network events.
We encourage those who have become relatively well to continue as members. There are still good reasons for being part of the NLMEN, not least that your experience could really help fellow members.
If you are recovering and starting to think about a return to employment we hold information from that most helpful of organisations, Benefits and Work, on the issues around working with an illness or moving from benefits to work. Also many members have found that doing voluntary work for the group is an excellent, controlled, way of “testing the water”. What’s more a spell of voluntary work makes a work-deficient CV much more attractive to a potential employer and can help hugely with re-learning skills, or picking up some new ones. Volunteers may be able to get free skills training, via our links with Islington Voluntary Action Council, or even free computer equipment (see link below).