Blog Archives

Rituximab discussion

22/3/2015

March 2015

Rituximab discussion –
With links to radio broadcast, and transcript

Following from MEA -

Rituximab discussion on BBC Radio Cambridgeshire | 22 March 2015 www.meassociation.org.uk/2015/03/rituximab-discussion-on-bbc-radio-cambridgeshire-22-march-2015/

Two Norwegian scientists, Øystein Fluge and Olav Mella, who have been researching the effects of an anti-lymphoma drug called Rituximab on people with ME/CFS, talked about their work on the BBC Radio Cambridgeshire programme ‘Naked Scientists’ yesterday (Sunday, 22 March).

To listen to the discussion, click on the following link to the BBC iPlayer: www.bbc.co.uk/programmes/p02ldh8b
It begins 39 minutes in.

Link to transcript made by Mr Russell Fleming: https://docs.google.com/file/d/0B-NT-7M70igucHpIUlRMbkhraWs/edit

SECOND DRUG TRIAL

A second anti-cancer drug is being tested on patients with ME/CFS at Haukeland University Hospital, Norway – where trials on Ritximab have already been carried out.

Dr Øystein Fluge, a member for he Rituximab team, will be giving cyclophosphamide infusions once every four weeks to up to 30 patients to see if their condition improves. This second drug is traditionally used to treat some types of malignancy – such as leukaemias and lymphomas.

More details on the cyclophosphamoide story here: http://wp.me/p3Txzy-5Xw

Fundraising: The Bishops Frome Bingo Gang

15/3/2015

March 2015

Fundraising: The Bishops Frome Bingo Gang

Beryl Compton and her relatives and local friends continue raising funds for the MEA’s Ramsay Research Fund. . The Spring 2015 (MEA) ME Essential magazine records a donation of £742.00.

The 2011 MEA link below gaveS thanks to Beryl – at that time she had raised £45,000 in 23 years.

Hats off to the Bishops Frome Bingo Gang, Ledbury Reporter, 9 July 2011
www.meassociation.org.uk/2011/07/hats-off-to-the-bishops-frome-bingo-gang-ledbury-reporter-9-july-2011/ Bingo yields good return for charity, Ledbury Reporter. 9 July 2011

A COMMUNITY hero has raised about £45,000 to help fund research into a neurological illness.

Beryl Compton, of Stanford Bishop, has reached the impressive total over a period of 23 years by organising bingo events with family and friends in the Bishops Frome area for the ME Association.

March 01st, 2015

1/3/2015

March 2015

Action for M.E. -

“Bold assertion” about exercise and M.E. www.actionforme.org.uk/get-informed/news/daily-press-summary/bold-assertion-about-exercise-and-me

“Bold assertion” about exercise and M.E.
In a letter to Therapy Today, Joan Crawford questions its February 2015 report on exercise and CFS. She says of the article: “Uncritically your report states that ‘Both CBT and GET have been shown to be beneficial to people with CFS.’ The evidence base does not support this bold assertion.” Crawford goes on to reference some clinical trials and their limitations.
Therapy Today, online
1/3/15

M.E. Association -

Activity and chronic fatigue syndrome | letter in Therapy Today | March 2015 From Therapy Today.net, March 2015. Letter by Joan Crawford.

http://www.meassociation.org.uk/2015/03/activity-and-chronic-fatigue-syndrome-letter-to-therapy-today-march-2015/

In the February 2015 edition of Therapy Today (News, p6) there is a short report on exercise and CFS. Uncritically your report states, ‘Both [CBT aimed at increasing patients activity and GET (graded exercise therapy)] have been shown to be beneficial to people with CFS.’ The evidence base does not support this bold assertion.

In a recent Cochrane Review(1) of the eight clinical trials of GET (n=1518) 85 per cent of the patients (n=1287) were recruited into five of these trials based on one symptom – fatigue.(2) This is a common symptom of many health problems, including major depression, making generalisation of the findings problematic. The high percentage of patients included in these trials with elevated levels of distress perhaps indicating a depressive state,(1) which may be their primary condition, confounds the results. Exercise, through behavioural activation programmes, has a moderately positive impact on patients with depression.(3) It is unclear whether the modest improvement seen in some of these trials can be accounted for by an improvement in low mood caused by depression. Moreover, where there are data, there is a high usage of antidepressants in patients included in trials. Three further trials used the CDC(4) CFS criteria (n=231). While these criteria purport to be more selective, they do not necessarily include patients whose primary difficulties include post-exertion weakness and debility beyond broadly defined fatigue and other general symptoms, that could be attributed to CFS or major depression.

There is also an issue with lack of evidence of patients’ fidelity to exercise programmes using objective measures. Without using monitoring devices such as actimeters or pedometers to track daily activity levels, we have no accurate way of assessing whether an increase in activity occurred and whether this helps. Black and McCully’s study(5) demonstrates the difficulties CFS patients face when trying to increase activity and concluded that they were exercise intolerant, unable to sustain activity targets.

Many patient surveys from across the world report numerous instances of harm and worsening of symptoms from taking part in exercise programmes. For a summary of the difficulties and limitations of the reporting of harms, in and outside of clinical trials, and why these might be underestimated, please see Kindlon.(6)

Joan Crawford
MA, MSc, CSci, MBPS, MBABCP; Chair, Chester ME self help (MESH); humanistic counsellor, CBT therapist and trainee counselling psychologist

References:

1. Larun L, Brurberg KG, Odgaard-Jensen J, Price JR. Exercise therapy for chronic fatigue syndrome. Cochrane Database Systematic Review 2015. Exercise therapy for chronic fatigue syndrome.
2. Sharpe M, Archard L, Banatvala J et al. Chronic fatigue syndrome: guidelines for research. Journal of the Royal Society of Medicine 1991; 84(2):118–121.
3. Cooney GM, Dwan K, Greig CA et al. Exercise for depression. The Cochrane Library 2013. http://onlinelibrary.wiley.com/doi/10.1002/14651858.CD004366.pub6/abstract
4. Fukuda K, Straus SE, Hickie I, Sharpe MC, Dobbins JG, Komaroff A. The chronic fatigue syndrome: a comprehensive approach to its definition and study. Annals of Internal Medicine 1994; 121(12): 953–959.
5. Black CD, McCully KK. Time course of exercise induced alterations in daily activity in chronic fatigue syndrome. Dynamic Medicine 2005; 28(4):10.
6. Kindlon T. Reporting of harms associated with graded exercise therapy and cognitive behavioural therapy in Myalgic Encephalomyelitis/chronic fatigue syndrome. Bulletin of the IACFS/ME 2011; 19(2): 59–111.

Rituximab discussion

Fundraising: The Bishops Frome Bingo Gang

March 01st, 2015

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