The majority of those who responded to the QOL study carried out at the end of 2013 reported some degree of fatigue. The message from respondants was clear though different language was used: tired fatigue, low energy.
Is there any research being done into CLL and the origins of this Fatigue which might help us miigate it's effect on QOL.
Submitted by circleinteractive on 08 December 2014
CLLSA at NICE and preliminary NICE guidance for two new CLL treatments.
The CLLSA regulatory appraisals volunteer group are participating in six NICE consultations. CLLSA representatives commented on the following NICE documents and attended the Scope, Appraisal workshops and participated on appraisal committees to date this year this has resulted in the excellent news that two new treatments have already received preliminary recommendation by NICE for NHS treatment of CLL in England and Wales:
CLL Support Association membership is open to all, is free and lasts a lifetime but we focus our support to cater for the needs of UK CLL patients and carers. You must be over 16 years old to register. In registering as a member you are acknowledging that you are aged 16 or above.
Membership of the CLL Support Association (CLLSA) is free and is available to all. We would like all visitors to this website with an interest in CLL and the activities of the CLLSA to register with our website.
We will not under any circumstances publish your details or share them with any other party. The sole purpose of registration is to ensure that we know the patients etc. that we are serving and that we can provide you with e mails, mailings etc with details of the activities of CLLSA . Whilst we welcome everyone to our mailing list please note that we are a support group for UK patients and carers and we will not be mailing by post any information to any overseas members.
Finally, although a free service, we do need funds to enable us to provide this service which is run by volunteers. We hope that you consider our objects to be worthwhile and that you may consider making a donation to CLLSA.
A full 60 members came to the Midlands meeting on the 25th May to listen to Dr Ben Kennedy give a brilliant talk on some of the latest thinking on CLL. Both new attendees and the members who are now regulars agreed that this was a thoroughly enjoyable meeting. The weather was fine, the venue was friendly, and we all had a great time even though we were meeting to discuss the illness that affects us all.
There were just over 50 people at the meeting on July 15th. Dr Duncombe, the speaker, is an expert in CLL drug trials. Drug trials build on the best treatment available for a specific type of CLL patient, you never get a placebo treatment. The standard of care given to the patient who takes part in a drug trial is extremely good.
Our second autumn meeting at GSK house was attended by many enthusiastic people. Many thanks to GSK and especially to Philippa Manning who did the organisation at that end - it all went incredibly well.
It can be daunting to arrive at the headquarters of a global pharmaceutical company with the present level of security alerts in place- but the security people, and all the GSK staff, were inevitable courteous, and we all got in to the meeting.