Author Archives: Heidi

What is ME?

M.E. (Myalgic Encephalomyelitis), which is also known as Chronic Fatigue Syndrome or Post-Viral Fatigue Syndrome, is a chronic, disabling illness, which can affect both adults and children. It is currently estimated that there are over 250,000 sufferers throughout the U.K., and around 25,000 of these are children.

After many years of controversy surrounding this illness, the World Health Organisation now classifies M.E. as a neurological illness. It is commonly triggered by a viral infection and anyone, regardless of age, sex or ethnic background can develop the illness.

The symptoms vary from person to person, but the most common ones are:
– Profound, lasting fatigue, which does not improve with rest
– Severe joint and muscle pain
– Persistent headaches
– Impaired memory and concentration
– Sore throat, and/or enlarged lymph glands
– Abdominal pain and/or nausea
– Disturbed sleep pattern
– Poor temperature regulation
– Sensitivity to light and noise

There is no known cure for M.E., although an early diagnosis, adequate rest in the early stages and effective advice on the management of the illness can significantly improve the chances of a full recovery. M.E. can last between a few months and many years. Only twenty percent of sufferers are likely to make a full recovery in two to four years. Of the remaining group, around 60% improve significantly over time, whilst 20% become chronically and severely disabled.

Many people affected by ME are unable to work, having had to give up after the onset of the illness, and become reliant on whatever state benefits they can claim. Sadly, due to the ongoing misunderstanding surrounding the illness, many sufferers do not receive the level of benefits they are entitled to, and endure financial hardship as a result.

 

 

So as to make it easy for anyone who is ill to find us, we use the terms M.E., Chronic Fatigue Syndrome, CFS, CFS/ME and ME/CFS interchangeably,

Annual Review 2011

We currently have 120 members. Financially, we are still in a satisfactory position at the end of our financial year, thanks to the large anonymous donations received by the group several years ago. At 31 July just over £3100 in our two bank accounts. The problem is that the money is going down fast. Last year we used up £966 compared with around £400 the year before. We do get money in from subscriptions – around £550 in the year just ended – but reminding members and chasing them up is a huge effort for the few of us who run the group. We also get some quite large donations. But it’s not enough to staunch the outflow. So the message is we either have to get better at getting money in or find ways to cut our expenditure before we run out of funds entirely. If anybody wants to see the accounts, with all the detail, I’m happy to give them a copy. I have also filed them with the Charity Commission so the totals are on the Charity Commission website for anyone to see.

Our biggest single cost item is the newsletter. Since taking over Outreach eighteen months ago, Jean Higgins, has maintained the high standard of previous newsletters, keeping it topical and lively. We are all grateful to her for all the work she puts into it. So many group members are unable to get to meetings and events, and we know from surveys we’ve done over the years that they regard Outreach as a lifeline. Also we shouldn’t forget the important behind-the-scenes work done by Martin on maintaining the membership database and Colin on actually sending the copies out.

Our new website has a public area and a private area that only members can access. Heidi does a valuable job looking after it and has also set up a group Facebook page. Increasingly, new members find us via the internet.

We have held fewer social events than we would have liked this year. The regular local meetings (essentially down to the one in Chiswick), overseen by Cath Ross, continue to be popular for those able to get to them.

We also run a fund for members who need small sums for financial assistance. Janet Battams, the administrator of THAT Fund, as we call it, reports:

“The Fund Panel has had five applications for funds this year, covering household repairs, treatments and a holiday, and paid out a total of £329 during the financial year. Members who received these grants were very appreciative of the assistance given to them. Unfortunately, due to financial constraints, the Fund is at present unable to issue grants but hopes to resume asking for applications at the end of the year”.

Every six months, I chair a meeting of several London ME support groups, called ME London, which we all find valuable in terms of exchanging ideas and talking about issues of mutual interest.

Finally, a few of us do a lot of work to keep this group going and we would welcome help with the running of the group from any member who feels able to contribute.

Tony

Annual Review 2010

An annual review 2010, written by the Network MESH Chairman Tony Golding and presented in the 2010 Annual General Meeting

Summary:

  • Financially, we are still in a good position thanks to the large anonymous donation we received several years ago. But our resources are running down and we have been asking those members who can afford to pay for subscriptions
  • A new member, Jean Higgins, has volunteered to take over the editorship of our newsletter Outreach
  • Heidi and Pamela set up a new website for the group
  • In order to boost our funds, Heidi and Carolyn have been creating greetings cards for sale. The cards have been selling well.
  • The THAT Fund team were busy earlier in the year working on the information leaflet which was distributed with the summer issue of Outreach.
  •  We raised £1425 for ME Research UK in memory of Eva Sanders

Financially, we are still in a good position thanks to the large anonymous donation we received several years ago. But our resources are running down and we have been asking those members who can afford to pay for subscriptions, even though this is an exercise that involves a lot work and energy on the part of the committee. So far, 73 members have renewed their membership, contributing a much-needed £645. In brief, we had an income of just over £1200 in our financial year, which ends on 31 July, but we spent just over £1600, which means we had to dig into our capital for the difference—-a bit under £400. Our biggest expenditure is the newsletter, which comes out four times a year. If anybody wants to see the accounts, with all the detail, I’m happy to give them a copy. I have also filed them with the Charity Commission so the totals are on the Charity Commission website for anyone to see.

Priscilla has done an excellent job since taking over as editor of the newsletter. Due to personal circumstances, however, she has had to bow out. We thank her for her vital contribution to the group. Very fortunately, a new member, Jean Higgins, volunteered to take over the editorship and was responsible for the last Outreach, which maintained the high standard of previous newsletters. So many group members are unable to get to meetings and events and we know from surveys we’ve done over the years that they regard Outreach as a lifeline. Also we shouldn’t forget the important behind-the-scenes work done by Martin on maintaining the membership database and Colin on actually sending the copies out.

Our new website is now up and running, with a public area and a private area that only members can access. Although Heidi has moved to Kent she will continue to administer the website for us as this is something that can be done remotely. Increasingly, new members find us via the Web.

Heidi and Carolyn have also been responsible for another initiative: taking photographs and turning them into attractive blank greetings cards for members to sell to each other or to people outside the group. The surplus we make goes into group funds. The first batch of cards was a success so a second batch has been produced for sale here today and at other group events.

We have held fewer social events than we would have liked this year. The regular local meetings, overseen by Cath Ross, continue to be popular events for those able to get to them.

We also run a fund for members who need small amounts of financial assistance. Janet Battams, the new administrator of THAT Fund, as we call it, reports:

“Since the last report two grants have been agreed and cheques sent out. Both applicants appreciated the help given to them. Recently there have been two enquiries with one application returned for consideration. The Fund team were busy earlier in the year working on the information leaflet which was distributed with the summer issue of Outreach. We hope it will encourage members to apply.”

Before I finish I just want to pick out a few other things. We raised £1425 for ME Research UK in memory of Eva Sanders. Every six months, I chair a meeting of several London ME support groups, called ME London, which we all find valuable in terms of exchanging ideas and talking about issues of mutual interest.

Annual Review 2009

Summary:
In the Annual General Meeting in October, Tony Golding presented an annual review highlighting the most important things that went on in the group in 2009. Financially, he pointed out, we are still in a good position although our resources are gradually beginning to run down. He also praised the team behind our newsletter Outreach, with Priscilla doing an excellent job as the new editor. Janet Battams took over as the new administrator of the THAT fund. At the InvestinME conference, which several of our members attended, Catriona made an impressive and hearfelt speach. She also put in a lot of work on producing our evidence on the Hillingdon clinic for the inquiry into NHS service provision by the All-Party Parliamentary Group on ME.

Financially, we are still in a strong position thanks to the large anonymous donation we received several years ago. But our resources are running down and we will need to ask members for subscriptions next year, even though this is an exercise that involves a lot work and energy on the part of the committee. In brief, we had an income of just over £1000 in our financial year, which ends on 31 July, but we spent £2250, which means we had to dig into our capital for the difference—-roughly £1250. Our biggest expenditure is the newsletter, which comes out four times a year. If anybody wants to see the accounts, with all the detail, I’m happy to give them a copy. I also have to file them with the Charity Commission so the totals will soon appear on the Charity Commission website for anyone to see.

Priscilla has done an excellent job since taking over as editor of the newsletter and we thank her for her vital contribution to the group. So many group members are unable to get to meetings and events and we know from surveys we’ve done over the years that they regard Outreach as a lifeline. Also we shouldn’t forget the important behind-the-scenes work done by Martin on maintaining the membership database and Colin on actually sending the copies out.

We currently have 144 members. Ninety per cent of these are located in London and around 80% in West London, broadly defined. Over 60% of our members are now on email. A small group is looking currently on how we can refresh our website and create an easy-to-use discussion group. We get a steady stream of new members. The majority of these find us through our website, so it is important that it is as good as we can make it. Keeping it up-to-date is, as ever, an issue.

We held a several successful parties through the summer. The regular local meetings, overseen by Cath Ross, continue to be popular events for those able to get to them.

We also run a fund for members who need small amounts of financial assistance. In the last two years we have given grants to 11 members, totalling £1431. I’d like to read a report I have from Janet Battams, the new administrator of THAT Fund, as we call it:

“Marion Kinn has stepped down from the position after several years and we would like to thank her for all the work she has done. We are pleased she is keeping her link with the Fund as she will act as stand-in on the Decision Panel if any of the three regular members (Carolyn Appleby, Janet Freeman and Mark Yabsley) are unavailable to consider applications.

The new administrator was introduced to the team at a meeting in July as a ‘get to know you’ and to review the Objectives and Guidelines of the Fund. One of the main ideas put forward at the July meeting was that a leaflet explaining the function of the Fund should be produced and sent out to all MESH members. This task is now in progress. The Fund has had four applications so far this year. Three of these were successful and the fourth was still under consideration at the time of writing.”

Before I finish I just want to pick out a few other highlights of the year. In May several of us attended the InvestinME conference. The group sponsored Shamsa Khan, the Occupational Therapist at the Hillingdon ME Clinic, to attend the conference. Catriona made what everyone agrees was an impressive and heartfelt speech at the Royal Society of Medicine conference in July. It has been reproduced many times, on the Net and in other group newsletters. We also have to thank Catriona for all her hard work on producing our evidence on the Hillingdon clinic for the inquiry into NHS service provision by the All-Party Parliamentary Group on ME. The inquiry was conducted over the summer and we are still waiting for the results.

Finally, a few of us do a lot of work to keep this group going and we would welcome help with the running of the group from any member who feels able to contribute.

 

Annual Review 2008

Financially, we are still in a strong position thanks to the large anonymous donation we received several years ago. The group decided that half should be devoted to biomedical research into ME and this has been donated. We felt that the remainder should be allocated to helping members of the group. Examples are the grants awarded by THAT Fund, set up to alleviate hardship and provide small amounts of assistance to members. Also the four therapists offering their services at the AGM will be paid out of the group funds.

However, we also decided last year that members should contribute to the running costs of the group so that we did not deplete our capital resources and we resumed asking for subscriptions. As usual, this was a time and energy-absorbing exercise for me and several others on the committee, as it involved a lot of chasing of those who do not respond to requests in the newsletter or emails.
We did eventually pull in about £1000 in subscriptions and have now established a fully up-do-date membership list with 135 people on it. Interestingly, 75 of these are on email, making it easy for me to send out reminder notices and things of general interest to people with ME.

In summary, the group had revenues of £1555 in the year to 31 July 2008 and we spent £1870, which meant we had to dig into our cash resources for £315 to keep going. This is not as bad as it sounds. Actual running expenses are less than £1000 a year. The extra expenditure was on grants from THAT Fund to members and a donation to ME Research UK. The accounts are available from me if anybody wants to see them.

The newsletter continues to go out to all members under Sally’s capable editorship and is back on track, I’m pleased to say, after a short gap while Sally and Frank moved to their new flat. We shouldn’t forget the behind the scenes work done by Martin on maintaining the membership database and Colin on actually sending the copies out.

We held a successful Summer Party in July. Everyone enjoyed sitting in the Friends Meeting House garden on one of the few sunny days of the year. The regular local meetings, overseen by Cath Ross, seem to be going well, although how well varies according to the available energy of members in each locality.

The imaging project at Hammersmith Hospital was reformulated in
September last year on a less ambitious basis and brain scanning of 25 ME sufferers and 25 healthy controls is in now full swing. It is due to be completed in April next year.

Finally, with extensive help from a few members, we completed the Profile Project. All in all, we now have useful information on the wants and capabilities of 113 people in the group who responded to the telephone questionnaire. We are still working out how we can use this database to benefit members, particularly in terms of reducing isolation.

Tony Golding