What happened at our January 2010 Meeting
Illness depleted the attendance at this months meeting, plus it was bitterly cold which didn’t help either.
A lot of the meeting was taken up with general housekeeping administration and preparation for the
AGM, which takes place in March.
Discussions varied, including assisted suicide, which is in the news at the moment.
The price of alternative treatments was discussed at length, as the group has had contact from Osteopathy, Crystal Healing, The Gupta Programme, and The Lightening Process. As a group we cannot support any of the treatments, but it was agreed that if anyone wants to try them, their feedback would be welcome and their experiences would be discussed within a group meeting with interest.
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November 09 Meeting
There was a discussion about the Perrin Technique that one of the members had benefited from, after having terrible effects from the Lightening treatments.
We have yet to receive anything positive about that treatment.
There was also a discussion about the XMRV Retro Virus
study and as yet nothing positive has been heard or received, high hopes have been pinned on this study.
This, being the last meeting before Christmas, we had a bit of a “DO” which consisted of a hot meal to everyone’s tastes and a hot or cold drink or two to go with it.
The evening was very, very cold, so hot food was very welcome.
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October 09 Meeting
This meeting was taken up with quite a bit of administration, but afterwards the group focused on alternative treatments.
We have been approached by various outsiders trying to sell their wares to the group. They were also offering to give varying lengths of talks that varied from 20 minutes (about right) to 1 hour (far too long) explaining the benefits of their products. None of the members within our group wanted their brains to try and concentrate for that long, 20 minutes per topic being quite enough.
It turned out that within the group, every product had been tried before, over the years, and apart from the extreme cost of some of them, no one had reaped any benefits from them, only lighter pockets with the sheer expense. It was decided that the group did not want any of the people who had introduced themselves to the Committee to talk to them within a meeting.
At present we do have one member who is actively taking Carnitine, and we await his comments at a meeting after he has taken it for a couple of months.
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September
09 Meeting
Despite our extra break for the summer the meeting was quite well attended. It was found by several members that the use of pacing was good, but they had set their goals too high to start with, and have come crashing back down to earth. Targets for pacing must be set very, very, low at the start, in fact much lower than most people think. Base lines are set low for the reasons of avoiding the inevitable burn out that has occurred in at least 2 of our members, they didn’t have their targets low enough to start with and then tried going too fast up to their set targets. Obviously they have now been set back quite severely.
The groups fundraising efforts during the summer mean that administratively we can survive quite comfortably as a group for the foreseeable future.
We are now in a position to re-start our group Newsletters; these take the form of, information that may be available about ME/CFS,
jokes, recipes, in fact anything that may be of interest to members within the group.
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July 09 meeting.
This mid summer meeting was split into two halves, with the committee doing the menial tasks, while everyone else got on with the job of being a Self Help Support Group.
Among the many topics that were discussed this month was the vexing question of symptoms. They are so varied and numerous, that this topic alone could take up the whole of the meeting, but unfortunately the majority of members are taking painkillers from the Doctors to cope with pain, and this was the only option available from the Medical profession.
The next topic was Digestive problems, and the many and varied remedies that others within the group found helped them. There is no one thing that can help all, but over the course of managing the illness they had found out what helped them, and chose to share their experiences with everyone.
The 3rd major topic discussed was the varying recommendations from General Practitioners (GP’s); it was even found with one local practice that two people with the same illness were treated very differently, by the same GP.
As with everything with this illness there is no hard and fast rules, no two people who have the same reactions to treatment, and no two GP’s with the same ideas. The conclusion being that patients are very, very isolated and lonely within this illness.
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June 09 meeting.
4 of the new style posters have been received; these will be strategically placed throughout the north of the county where there is nothing at present.
Our local MP has sent a letter informing the group of various grants that are available, it was decided to pursue one of the contacts and see what exactly their criteria is.
The group then began a discussion about various safe remedies that are available, one discussed at length was, Bach Original Flower Remedies, in particular one called Olive.
The member that brought the topic to our attention has found help after using this for the last 2 months, and has a far better standard of life. The group did, however, warn her about the dangers of overdoing things, the boom and bust of ME. She realised that she will have to be aware of the fact that maybe she will have to be more careful as she may just be having a slight remission at the moment.
On reading more into the remedies, there is nothing of a toxic nature within the products other than a certain amount of alcohol, and this is needed to prolong its shelf life.
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There was no meeting in May due to the Bank Holiday.
April Meeting 2009
On a night of atrocious April heavy showers our numbers were understandably down, even so we welcomed yet another new member to the group who has been ill for at least 5years. He was diagnosed at Kettering General Hospital by a Dr Andrew Steel. No one in the group had heard of this Consultant before.
One of our members had been given a report from her friend, by email, about Aspartame. This is used as a sweetener instead of sugar, marketed as ‘Nutra Sweet’, ‘Equal’ and ‘Spoonful’. It is found in most Diet Colas including Pepsi, if it says low or no sugar, chances are it is a sweetener instead. It is the build up of toxins caused by the chemicals in these artificial sweeteners that cause the problems, and many of the symptoms are found in
ME/CFS, it was agreed within the group that the illness is bad enough without the toxicity of artificial additives adding to them. The chemical breakdown was quite complicated for the group to absorb, but did agree that it was possible it could be a contributory factor in making the symptoms worse in some people. |
March Meeting 2009
The main focus of this meeting was the Annual General Meeting. All positions were vacant, but as there was no one else interested in taking any of the posts, the committee was re-instated unopposed.
Following the A.G.M. we welcomed a new member to the group. He was asking so many questions, that it was felt best to let him find out the answers that he wanted from within the group, so, with the amount of different topics that were discussed, within the different groups of members, it would be impossible to summarise them all here.
One idea that did come from this meeting was to try another formula at our meetings, and this will be tried out at our next one. Obviously the normal housekeeping and correspondence will have to be dealt with first though. To find out what this is you will have to attend our next meeting. |
February Meeting
2009
It was decided that we would help with ME Awareness week and add a few faces to the banner that was paraded at the High Court earlier in the month, using the same banner with many additional ME faces.
6 of our members had their photos taken so that they too can be added to the banner.
As a group we welcomed another new member, who shared with the group how, when, and where her ME became a problem. She also explained how the illness affected, and
how it affects her way of life, and how she has, to some extent at least, learned to manage the illness, as much as anyone can.
There was no topic for discussion this month, and the group talked to each other on various problems that had cropped up during the previous month. |
January
Meeting 2009
Our first meeting of the New Year was very well attended. Winter meetings
have notoriously been poorly attended, due to the sometimes cold and wet
conditions.
We welcomed a new member to the group, and during discussions about the
onset and ‘diagnosis’ of the illness it transpired that patients from
certain enlightened practices, are now being referred to a hospital in
Nuneaton. The address and telephone number have been made available to the
group. This is great, as for the last 14 to 15 years we have had NO way of
referring anyone further than their own GP’s. This county is known for
not supporting ME/CFS, which is a shame as it is well known that the
action taken as soon as ME/CFS is suspected can determine the long term
treatment, thus lessening the impact of boom and bust. Pacing and rest
being the key messages supported by this group.
It is hoped to do more fundraising for the group later in the year,
although what form it will take has not been decided as yet. We have had
an offer of a group to play at a 60’s – 70’s night if we would like
them to, so that is a great start. |
November Meeting 2008
We were pleased to welcome another new member to our group. Having suffered with ME/CFS for some 16years, she had only received her diagnosis 5 weeks before the meeting. The realisation that she was not imagining her illness for all of those years was reassuring to her, and also the fact that she is far from alone.
The group was presented with the information that has become available about the new Health Campus that is to be built in Corby. It is welcomed by the group as a step forward for the town.
This was the last meeting before Christmas and the New Year, so everyone enjoyed a cooked meal, hot drinks, raffle, and the distribution of Christmas cards and a token present each. It has become a tradition to use the November meeting as our Christmas ‘Do’, due to the fact that most members are unable to attend a noisier, more formal party.
We do not have a meeting in December, as it falls within the holiday period, and most members need that time for their rest, before the New Year celebrations. |
October Meeting 2008
This meeting referred back to our meeting in July when the subject of Charcoal Tablets was discussed. Well several members have continued using them and have found the benefits far out way the inconvenience of taking yet another pill. Food absorption, flatulence, and not least smell have all benefited. No adverse effects have been felt.
As we had a new member present, the discussion was mainly about CBT, pacing and other methods that have been tried within the group.
We have a volunteer from within the group to take an interest in the new LINK project. This is the new
system replacing the PCT’s in the county. It is hoped that an input from the group will highlight ME/CFS.
It was stated that there have been some positive letters in the local and national newspapers, since our last meeting. They put the point across that there is still a great lack of understanding about ME/CFS. |
September Meeting 2008
This meeting took place after our long summer break, and many members were not feeling very good, come to that the carer’s did not feel too bright either, so the discussion took on a more reflective stance. Coping with ME/CFS and also with other family problems and issues seems to be too much at times to cope with. The pressure becomes immense and our bodies and minds tend to want to go against us.
The new posters that have been printed were distributed to members and they will put them in prominent positions within their own areas. Hopefully the advertising will help to inform others that we are here and open for
support. The little cards that have been printed for us were also given out; they contain all of the contact details for the group. It was felt that these would be handy for people who do not have access to the Internet. |
July Meeting 2008
The main topic of the discussions was food absorption, and the very real problems members have within this subject.
Flatulence, Irritable Bowel Syndrome, bloating, sickness, diahorea and lethargy all came under the same heading. The causes and effects of over the counter remedies were also discussed, including the use of Charcoal Tablets. As the members who were trying Charcoal had not been using it for very long it was not possible to deduce whether or not they were having any effect on the symptoms.
The group then went on to discuss the lack of support, to a greater extent, from the medical profession. Anything that members had, and have tried was mainly by self-diagnosis and self-help. It was agreed that although not ideal, it was the only way to have any sort of control of their own bodies, enabling them to function day to day. Professional help would be the ideal, but in this County, it was also agreed, there is a definite lack of support in dealing with certain symptoms. The Doctors locally mostly acknowledge ME/CFS, but are loathed to seek further guidance in dealing with various symptoms that occur.
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