July 2001 Newsletter - Part 2
Remember, you can also click on the lines separating articles to return to the newsletter contents
Remember, you can also click on the lines separating articles to return to the newsletter contents
Several years ago we sent out a questionnaire to all our members and one of the things we asked was for feedback on local consultants and alternative therapists. We are now hoping to update this information and so would welcome your help again.
What is your experience, good or bad, with hospital consultants? Obviously we are interested to hear about any you may have been referred to because of your ME. But we are also interested in those you might have seen about some other condition since you first became ill with ME. If you told them about your ME, what was their reaction? Did they just dismiss it or did they seem to understand that there may be some interaction between the ME and your other condition?
We are also interested to hear about any alternative therapists you might have consulted. Was your experience good or bad?
Don't worry, we're not going to start sending out a "black list" of consultants and therapists people don't like, but one of the main tasks of the group is to provide the information which our members need, and this is only as good as the feedback which we receive from other people - so please try to help if you can!
For those of you who have access to the Internet, this is an interesting site, which allows people who have ME/CFS and other conditions to rate different therapies they have tried according to effectiveness, cost etc. It's a new site and, to be honest, there aren't enough write-ups yet for it to be all that useful but it's a good idea and perhaps deserves your support.
If you would like to contribute some ratings based on your own experience of therapies or just want to take a look, you can find it at www.remedyfind.com
Article from Perspectives the journal of the ME Association.
Extract of willow bark, a traditional herbal remedy, has been compared to placebo in a randomised trial in people suffering from chronic back pain. The interesting results showed that nearly 40% of those receiving a high dose of the willow bark reported that their pain was completely relieved compared to only 6% given a placebo. Side effects were minimal and the researchers concluded that willow bark extract may be a useful alternative drug for people who cannot tolerate non-steroidal anti-inflammatory drugs such as Ibuprofen/Brufen or who find other mild to moderate pain relievers ineffective.
(ref. American Journal of Medicine, 2000, 109-9-14)
If you have found willow bark effective for pain relief in ME/CFS please write to Dr Charles Shepherd at the ME Association, 4, Corringham Road, Stanford le Hope, Essex SS17 OAH.
The General Medical Council recently issued all doctors in the UK with guidelines on professional conduct. The key points from this advice are summarised below:
If you meet a doctor who has no respect for this advice then a formal complaint to his/her employer or the GMC is a perfectly reasonable course of action to take.
This article is taken from the Medical Welfare Bulletin in Perspectives the journal of the ME Association 
Website: www.meassociation.org.uk .
Has anyone claiming PHI payments been sent by their insurance company for a private medical assessment involving various physical evaluation tests known as the Blankenship system? If so, the ME Association would be interested to know what this involved and how the results were interpreted in relation to the claim. In particular, has anyone had a PHI claim refused or terminated as a result of this type of assessment? If you are experiencing problems with PHI claims as a result of this type of assessment, the ME Association has information about solicitors with considerable experience in dealing with PHI disputes. Please contact the Information Department of the ME Association for more details.
This item is taken from Perspectives the journal of the ME Association.
Jenny Thompson can offer all Biocare, Lamberts and Higher Nature products at a 25% discount for minimum orders of £25, £15 and £10 respectively - with payment in advance. The product will then be sent to you from the supplier.
She can also supply a wide range of herbal tinctures (in small or large quantities) at very reasonable prices eg Milk Thistle £1.18, Echinacea £3.30, Astragalus £1.54, all per 100mls. These items must be collected from Jenny's home.
For further information about products and prices, Jenny will be available most Wednesday mornings, 10.30-12.30 on 
0113 294 2382. Orders and cheques, payable to Jenny Thompson, should be sent to her at 34 Greenwood Mount, Leeds LS6 4LG.
Jenny is interested in nutrition but is not a qualified nutritionist. She has learnt to use herbs as part of her homeopathic training.
We recently became aware of some of our members who have epilepsy as well as ME and would be interested to hear from anyone else who is in the same position. Please contact Simon.
In connection with this, many thanks to all those in the Wakefield area who responded to our recent request for information about neurologists. The level of response was excellent - thank you!
Leeds Carers Centre and Wakefield and District Carers Association provide information and support for carers. Carers can get in touch with them to find out what is available or just for a chat. You can talk to them on the phone or visit them at one of their drop-in sessions in Leeds, Wakefield, Pontefract or Castleford. A home visit may also be possible. Phone them for more details.
The TACT Holiday & Respite Scheme is a national organisation which provides holidays and respite care for adults with disabilities.The holidays are tailored to the individual and the organisation can also offer information on where you might get financial assistance to pay for the holiday. Contact them on 0113 242 1388 for more details.
Carers Direct (part of Wakefield & District Carers Association) may be able to help with holidays for carers and those they care for. They have information on holiday facilities where both the carer and the sick person can go along together; respite facilities for the sick person to give the carer a break; and even places which specialise in providing a haven for carers to relax and get away from their duties for a while. You can contact Carers Direct on 01924 305544.
There's also a Home-Based-Break Service in the Wakefield district. This is organised by Wakefield District Council and offers help for the person you care for in the home (or help and support to take them out if they wish) so that you can take a break. An assessment by the social services will be needed in order to qualify for this service. Phone Carers Direct for more details.
Holiday Care, Dial and Radar can also give information on holidays.
A number of our members who have been too unwell to even consider holidays before, have recently improved enough to experience their first holiday abroad for many years. We thought it would be helpful to pass on some of their travel tips. Almost everyone we spoke to was extremely anxious before travelling, worrying about everything from how they would cope with the journey to how they would meet their dietary needs abroad. Many of our members have travelled to the Canary Islands or mainland Spain. Here the climate seems to suit the majority of ME sufferers and many have seen a great improvement in muscle pain, mobility and their overall condition (although of course we can't guarantee it will suit everybody)!
Your travel agent should be able to provide all the information you need to enable you to choose a suitable location and accommodation for your holiday. It is probably a good idea to take a list along so you don't forget to mention any special requirements you may have regarding disabled access etc. If you use a scooter to get around at home, you can probably hire one at your resort. Again ask your travel agent to check this out.
When you are booking your holiday you must inform your travel agent of any special needs you have regarding your flight. If required, you will be able to order a special meal for the flight which fits in with your diet eg gluten free. It is a good idea to book disabled seats on the plane. This usually ensures more foot room and greater comfort. It may be a good idea to take your ear plugs along if you are noise sensitive (handy for use during your holiday too)! The cabin crew should also be able to provide a pillow or blanket to make you more comfortable. If you have mobility problems the airline needs to be informed that you will be travelling in a wheelchair. Even if you normally manage to walk about at home, it may be worth hiring a wheelchair for your holiday (Light-weight wheelchairs can be hired from Clarks Independence Centre, 71 New Road Side, Horsforth, Leeds 0113 258 8888) or requesting the use of one at the airport - remember that you often have to walk long distances from the terminal building to the plane. Arrangements should be made to help you on and off the plane at both ends of your journey. You may also request help with handling luggage. All this can be arranged by your travel agent. Some airlines may even let you check in later than the normal two hours before your flight, but you must organise this in advance.
Hopefully you will have remembered all your medication, ear-plugs etc. If you have special dietary needs it may be a good idea to take some supplies with you, particularly for when you first arrive. Health Food shops sell soya milk powder for travel purposes (Oakwood Health Food Shop has it in stock). Wheat free bread can be easier to find in the rest of Europe than it is here. Gluten free may be more of a problem. If you are travelling to a Spanish speaking country and suffer from food intolerances we have a translated food list available. If you don't speak Spanish, this may help you when eating out or shopping in the supermarket.
If you have any similar tips you think others may find helpful, please send them to the Newsletter Editor
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If you are hoping to get out and about closer to home this summer, remember many shopping centres in the area have scooters available for hire. See the Shop-Mobility section in our useful numbers list. Supermarkets and DIY stores etc also have scooters for use by customers with mobility problems. It is probably best to phone them first and check scooter availability before setting out, particularly at busy times.
Stakeholder Pensions were introduced by the government on 6th April 2001 to help people save for their retirement. These are private pensions which are meant for people who do not currently have a good range of pension options available. They differ from other pensions in that you do not need to be working (and earning) in order to take part in the scheme. Contributions can be small and can be varied as circumstances change. The Financial Services Authority (FSA), the independent watchdog set up by the government to regulate financial services and protect your rights, has produced a fact sheet on Stakeholder Pensions. To get one of these, call 0845 606 1234. The Department of Social Security also publishes a leaflet on the subject, "Stakeholder Pensions - Your Guide". To get a copy of this, call 0845 731 3233 or visit their web site at www.pensionguide.gov.uk.
Many thanks to Jill Nixon for the following information regarding funding for students with ill health or caring responsibilities:
Students studying at degree level and postgraduates are eligible to apply to their Local Education Authority for Disabled Students Allowances. These grants help with the extra costs of attending a course which are due to disability. Call the DfEE (the government department which deals with education) on 0800 731 9133 or visit www.dfee.gov.uk/studentsupport
Students who suspend their studies because of illness or caring responsibilities can claim Job Seekers Allowance, Housing Benefit and Council Tax Benefit if they have recovered or their caring responsibilities have ended but they are not able to return to their course immediately.
Some carers who are students can still claim Invalid Care Allowance if they are doing less than 21 hours 'supervised study' per week. The ICA Unit has asked Ministers for a definition of 'supervised study' because two recent Commissioners decisions came to different conclusions.
The whole area of student funding and benefits is complex and the above is only intended as a rough guide to what is available. Students with ME or carers should take advice from SKILL , University or College Student Services or Welfare Officers for information appropriate to their circumstances.
We have received the following information about a new web site:
" We are developing a web site to provide careers and employment information for people with ME. We would like to hear from individuals who have experienced coping with the symptoms of ME in the workplace, and from employers who have experience of employing people with ME. Could you, or someone you know, offer some information and advice based on their experience that could help people with ME looking to enter employment? For more details see www.employ-ME.org.uk."
March 2001 Newsletter
©Leeds & District M.E. Group 2001
The views expressed on this website are for information only and should not be used in place of advice from appropriately qualified and experienced professionals.
The views given may not be those of the Leeds & District ME Group, the President, the Newsletter Editor, the Website Manager, or the Executive Committee.
We try to make sure all information is accurate and up to date but we cannot take responsibility for items included in this web site or guarantee their accuracy. Any use you make of this information is your own responsibility
The Leeds & District ME Group does not recommend any particular treatments or services. Before trying any new therapy you should discuss it with your doctor. A therapy which helps some people might not help you, and could possibly make you worse.
These comments also apply to information which is given at our meetings, via our helplines and by email etc.