Clonidine in the treatment of adolescent CFS:pilot study

Posted on August 30, 2012 by wames

Norwegian researchers have completed a trial into the use of Clonidine with adolescents with CFS. Clonidine is used for a wide range of disorders including hypertension, neuropathic pain, ADHD, anxiety/panic disorder, migraine and hot flushes.

ABSTRACT:

BACKGROUND:

This pilot study (ClinicalTrials.gov ID: NCT01507701) assessed the feasibility and safety of clonidine in adolescent chronic fatigue syndrome (CFS). Specifically, we assessed clonidine dosage in relation to a) plasma concentration levels, b) orthostatic cardiovascular responses, and c) possible adverse effects.

FINDINGS:

Five adolescent CFS patients (14-19 years old) received 50 Îźg clonidine twice per day during 14 days in an open, uncontrolled design. Plasma concentration of clonidine was assayed by standard laboratory methods. Changes in orthostatic cardiovascular responses were assessed by a 20o head-up tilt-test (HUT). Adverse effects were mapped by a questionnaire.After 14 days, C0 median (range) of clonidine was 0.21 (0.18-0.36) Îźg/L, and Cmax median (range) of clonidine was 0.41 (0.38-0.56) Îźg/L. Also, supine blood pressures and heart rate were lower during clonidine treatment, and the HUT response was closer to the normal response. No serious adverse effects were registered.

CONCLUSION:

Clonidine 50 Îźg BID seems to be safe enough to proceed from a pilot study to a controlled trial in a select group of adolescents with CFS (ClinicalTrials.gov ID: NCT01040429).

Clonidine in the treatment of adolescent chronic fatigue syndrome: a pilot study for the NorCAPITAL trial

 

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Herpesvirus and parvovirus found in ME/CFS

Posted on August 30, 2012 by wames

A Latvian study was published in Advances in Virology: Association of active human herpesvirus-6, -7 and parvovirus b19 infection with clinical outcomes in patients with myalgic encephalomyelitis/chronic fatigue syndrome.

Abstract:

Frequency of active human herpesvirus-6, -7 (HHV-6, HHV-7) and parvovirus B19 (B19) infection/coinfection and its association with clinical course of ME/CFS was evaluated. 108 ME/CFS patients and 90 practically healthy persons were enrolled in the study.

Viral genomic sequences were detected by PCR, virus-specific antibodies and cytokine levels-by ELISA, HHV-6 variants-by restriction analysis. Active viral infection including concurrent infection was found in 64.8% (70/108) of patients and in 13.3% (12/90) of practically healthy persons. Increase in peripheral blood leukocyte DNA HHV-6 load as well as in proinflammatory cytokines’ levels was detected in patients during active viral infection.

Definite relationship was observed between active betaherpesvirus infection and subfebrility, lymphadenopathy and malaise after exertion, and between active B19 infection and multijoint pain. Neuropsychological disturbances were detected in all patients.

The manifestation of symptoms was of more frequent occurrence in patients with concurrent infection. The high rate of active HHV-6, HHV-7 and B19 infection/coinfection with the simultaneous increase in plasma proinflammatory cytokines’ level as well as the association between active viral infection and distinctive types of clinical symptoms shows necessity of simultaneous study of

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Disability & Benefits on TV Mon 30 July

Posted on July 30, 2012 by wames

Britain on the sick     (How sickness benefits claimants are assessed)

Dispatches Ch 4       8 pm        More information

Disabled or faking it?     (New tests – victimising those who deserve the most help)

Panorama BBC2      8.30 pm   More information

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UK Government questions on mitochondrial disease

Posted on July 20, 2012 by wames

Questions Asked by The Countess of Mar:

1. To ask Her Majesty’s Government why mitochondrial function testing is not generally available through the National Health Service.[HL684]

25 Jun 2012 : Column WA23:The Parliamentary Under-Secretary of State, Department of Health (Earl Howe): We understand that mitochondrial function testing as a possible diagnostic test for chronic fatigue syndrome/myalgic encephalomyelitis is not yet accepted as part of normal clinical practice. It is for local commissioners to determine what services they should commission to meet the needs of their populations, within available resources and local priorities.

2. To ask Her Majesty’s Government, further to the Written Answer by Earl Howe on 25 June (WA 22-3), what assessment they have made of the findings recently published in the International Journal of Clinical and Experimental Medicine on mitochondrial dysfunction; and whether mitochondrial dysfunction occurs in any medical conditions other than chronic fatigue syndrome or myalgic encephalomyelitis.[HL1336]

17 July 2012 : Column WA36       The Parliamentary Under-Secretary of State, Department of Health (Earl Howe): We have made no assessment of this study, which looks at mitochondrial function in patients with chronic fatigue syndrome/myalgic encephalomyelitis.

Mitochondrial disease affects all organ systems and mitochondrial dysfunction has been increasingly linked with a number of neurological conditions including stroke, seizures, ataxia, migraine and Parkinson’s disease. There is also an association between mitochondrial dysfunction and a number of retinal degenerations, including diabetic retinopathy, glaucoma and age-related macular degeneration, as well as in some cardiac conditions such as cardiomyopathy or conduction defects. The most common condition related to mitochondrial dysfunction in the endocrine system is diabetes and adult onset diabetes has been found to have a mitochondrial component.

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Mitochondrial dysfunction found in ME/CFS

Posted on July 20, 2012 by wames

Abstract:

The objectives of this study are to test the hypothesis that the fatigue and accompanying
symptoms of Chronic Myalgic Encephalomyelitis/ Fatigue Syndrome are in part due to defects in energy provision at the cellular level, and to understand the pathophysiology of the defects so that effective medical intervention can be implemented.

We performed an audit of 138 patients (ages 18-65) diagnosed with ME/CFS and attending a private practice.

The patients and 53 normal, healthy controls had the ATP Profile test carried out on neutrophils from a 3-ml venous blood sample. This test yields 6 numerical factors that describe the availability of ATP and the efficiency of oxidative phosphorylation in mitochondria. Other biomedical measurements, including the concentration of cell-free DNA in plasma, were made.

The results of the audit are compared with the controls and a previous cohort of 61 patients.

We find that all patients tested have measureable mitochondrial dysfunction which correlates with the severity of the illness.

The patients divide into two main groups differentiated by how cellular metabolism attempts to compensate for the dysfunction.

Comparisons with exercise studies suggest that the dysfunction in neutrophils also occurs in other cells. This is confirmed by the cell-free DNA measurements which indicate levels of tissue damage up to 3.5 times the normal reference range.

The major immediate causes of the dysfunction are lack of essential substrates and partial blocking of the translocator protein sites in mitochondria.

The ATP Profile is a valuable diagnostic tool for the clinical management of ME/CFS.

Mitochondrial dysfunction and the pathophysiology of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)  Norman E Booth, Sarah Myhill and John McLaren-Howard

Press release and comment by Booth, Myhill and McLaren-Howard

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Michelle Penny – Living with ME for the last 17 years

Posted on July 20, 2012 by wames

For the last 17 years, Michelle Penny has been crippled by chronic fatigue and pain, which has left her virtually bed-bound. She tells Rachel Mainwaring what it’s like living with ME at Wales online.

Excerpts:

“I relapsed in October and this is probably the worst I’ve ever been,” says Michelle. “People think it’s just a condition that makes you tired all the time but it’s worse then that. It’s the pain that’s the worst thing. It’s not that I’m not motivated to do things, I just can’t. I just don’t have the energy and my legs really hurt…”

Michelle’s condition means she is also very sensitive to light and noise so, while sitting in bed, she has a slightly darkened room with very little natural light coming in, and plays her iPod very quietly, just to provide some background noise…

“It’s more than just being tired. I have trouble concentrating so I can’t even read books anymore, even though I used to love to read. I also get very random headaches…

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Disability Benefits survey

Posted on July 20, 2012 by wames

The Disability Benefits Consortium invites you to complete their survey if you are claiming (or have tried to claim) disability benefits.

It asks about ESA, DLA and back to work support and should inform their work to influence Government benefits policy and support the DBC’s (and WAMES’) campaigns to battle benefit cuts.

Please tell people about it and take the survey now. It should take no more than 15 minutes to complete and will be open until mid-September.

NB WAMES is amember of the DBC and supports its campaign to get a fair deal for ill and disabled people.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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Wheelchair service users’ experiences wanted

Posted on July 19, 2012 by wames

The Kafka Brigade, an independent organisation supporting NHS Wheelchair Services, has been commissioned to find out what service users value, and what service users think are the priorities for improvement.

This project has been commissioned by the National Leadership and Innovation Agency for Healthcare (NLIAH) on behalf of the Artifical Limb and Appliance Service (ALAS) which is part of the Welsh National Health Service (NHS).

The project coordinator is Dominique Bird, Senior Service Improvement & Development Manager, NLIAH (phone: 01446 233333) Dominique.Bird@wales.nhs.uk.

Please feel free to contact Dominique at any time if you would like further information or to discuss the project.

 

 

 

 

 

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Cardiff & Vale carers’ views wanted

Posted on July 19, 2012 by wames

Cardiff Council is working in partnership with Cardiff and Vale University Health Board and Vale of Glamorgan Council to put in place a strategy to make sure that they meet the needs of carers. Carers have told them that they would like earlier and more appropriate information and support to help them in their caring role.

If you are or have been a carer, please complete the survey which can be found here.  It asks questions about the type of information that would be useful, and where to find it.  It also asks about the type of training you may want as a carer.

If you would like a paper copy or need help in completing the survey please contact the Carers Policy & Development Officer on carers@cardiff.gov.uk.

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Dr Betty Dowsett 1920-2012 Eiriolwr dros ME

Posted on June 24, 2012 by wames

Gyda thristwch mawr yr ydym yn cyhoeddi marwolaeth Dr Betty Dowsett ar Fehefin 14 mewn cartref nyrsio yng Nghaergrawnt, yn 91 oed. Yn 2001, a hithau’n 80 oed, ac eisoes wedi ymddeol ers sawl blwyddyn, Dr Dowsett oedd y prif siaradwr pan lansiwyd WAMES yn y Cynulliad Cenedlaethol yng Nghaerdydd, a pharhaodd i fod yn ymgynghorydd i ni o hynny ymlaen. Roedd ei chefnogaeth yn ystod ein blynyddoedd cynnar wedi rhoi i ni’r hyder i ymgyrchu ‘yn erbyn llif’ y llanw meddygol.

Ganwyd Betty yng Nghasnewydd, Gwent, ac astudiodd feddygaeth ym Mhrifysgol Caeredin. Gweithiodd fel meddyg teulu yn Llundain, yna, yn dilyn astudiaethau pellach, aeth yn ficrobiolegydd ymgynghorol. Cronnodd arbenigedd mewn ME, gan weld miloedd o bobl ag ME o’r 1960au ymlaen wrth iddi weithio gyda Dr John Richardson a Dr. Melvin Ramsey. Roedd hi’n allweddol yn y gwaith o sefydlu’r clinig ME cenedlaethol yn Essex gyda’r Athro Leslie Findley.

Yn ystod y blynyddoedd diwethaf, roedd hi hefyd wedi gweithio gyda Jane Colby a’r Young ME Sufferers Trust (Tymes Trust), ar astudiaeth arloesol ar ME fel achos absenoldeb salwch hirdymor sylweddol o’r ysgol. Yn dilyn ei hymddeoliad, parhaodd i ddarlithio a chynghori cleifion a gweithwyr proffesiynol am ME, a hynny ar ei chost ei hun. Cafodd ei dyfynnu’n dweud, “Nid eich henaint sy’n cyfrif ond beth y gallwch ei wneud, ac ni fyddwch fyth yn rhy hen i wneud rhywbeth”.

Mae Simon Lawrence o’r Grŵp ME 25% wedi crynhoi ei bywyd:

“Roedd hi’n rhywun oedd wedi ymladd yn ddygn ac yn ddewr yn erbyn y sefydliad ynghylch eu safiad ar ME. Roedd hi’n llawn cydymdeimlad ac empathi tuag at bawb oedd yn cysylltu â hi am gymorth a chefnogaeth. Roedd hi’n rhywun nad oedd yn ceisio ennill clod nac enw iddi’i hun wrth helpu eraill, ond, yn syml, roedd yn gwneud y gwaith gan ei bod yn teimlo, fel meddyg, ac yn fwy pwysig, fel bod dynol, ei bod yn ddyletswydd arni i helpu. Yn wir, roedd hi’n cael pleser mawr o helpu pobl gyda’r afiechyd hwn.”

Cynhelir yr angladd ar ddydd Gwener 29 Mehefin. Yn hytrach nag anfon blodau, mae’r teulu wedi gofyn i bobl anfon cyfraniadau’n uniongyrchol i elusen ME o’u dewis.

Dylid anfon cardiau at The Family of Betty Dowsett, c/o The Cottenham Court Nursing Home, High Street, Cottenham, Cambridge CB24 8SS (ond peidiwch ag anfon cyfraniadau gyda’ch cardiau).

Llyfryddiaeth o bapurau Dr Dowsett

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