Monday, January 15, 2007

Fibromyalgia update

Been a while ssince I posted but this article makes some excellent points. I am in the middle of a flare right now with almost daily migraines and high levels of ibs symptoms and just so, so tired...

PERMISSION TO FORWARD, REPOST & USE IN NEWSLETTERS.To: All My M.E. Chums, ME Free For All.org volunteers & Online Groups.(If anyone is troubled by duplicates or prefers not to receive e-mails of this sort, please let me know and I'll remove you from the list immediately)Following the exceptional interest in this article, I received requests from at least one member of every M.E. on line group + others for a text version.I'm grateful to Stephen Ralph who defied sleep for as long as he could last night to produce the Lion's share of this work and I tidied it up this morning.I hope it will stimulate more people to respond with whatever their opinion since, I am sure, it increases the chance of at least one or two of us getting published.

The e-mail address is letters@mailonssunday.co.uk

CheersJohndrjohngreensmith@mefreeforall.org

Health Notes On your behalf Health Editor Sarah Stacey asks the experts for answers to your health queries

Q. My daughter, 33, has been diagnosed with ME (myalgic encephalomyelitis) but the doctors seem to be treating her as if the illness isn't physical but all in her mind. She's not getting better. Is there another approach?

A. There has been a fierce argument about the nature of this debilitating condition for several decades. Some psychiatrists claim it's a psychosomatic condition where patients imagine they have an illness but increasing numbers of scientists worldwide state that it's a genuine physical (or organic) condition. The situation was reviewed in a recent parliamentary inquiry, chaired by Dr Ian Gibson MP, which backed the latter; see the full report on www.erythos.com/gibsonenquiry/Docs/ME_Inquiry_Report.pdf.'

ME is a chronic inflammatory condition, involving the spinal column and nerves in the brain. It is a multi-system, multi-organ illness affecting the brain, hormones and immune system,' says Malcolm Hooper, Emeritus Professor of medicinal chemistry at the University of Sunderland. It can often be traced back a viral or bacterial infection, or even an immunisation, explains consultant physician Dr William Weir: 'Any infection switches on genes in the immune system fight back. But research suggests that in ME patients these genes aren't switched off once the offending organism is cleared, so the immune system is stuck in a state of red alert. Many patients say they feel as if they have flu all the time.' Toxic chemicals, such as organophosphate pesticides (used in head-lice shampoos), may trigger the illness, too.The reasons the psychiatric lobby have claimed the condition for their own are that patients are often depressed and tests show physical change.

Although virtually every disease has a psychological element, says the Gibson inquiry, 'it is likely the inactivity and lethargy caused by the ME combined with psychological aspects such ... social stigma, lack of classification or possibility of a cure, leave the ME sufferer ... more prone to depression.'Dr Weir explains that, `while inflammation is easy to spot in other inflammatory conditions, with ME it seems very subtle and diffuse.' The situation is complicated by the fact that chronic fatigue, one of the main symptoms, can be due to other illnesses, including underactive thyroid, as well as more serious problems, so excluding those is vital. The Gibson inquiry suggests adopting the criteria for diagnosing ME developed by Dr Bruce Carruthers's team (see the Gibson inquiry, as before, pages 15-17).

Sadly, the £11 million NHS budget has, to date, gone into centres where ME is treated as a psychiatric condition with cognitive behavioural therapy (which has helpful but transient effects in some patients), graded exercise therapy (which some experts say is positively damaging) and pacing, a method of managing energy (which is common sense).

More research is vtal but the Gibson inquiry emphasises the need for a `holistic, mind and body approach'.

Expert advice includes:
a.. Eat well with omega-3 rich oily fish and fresh vegetables and fruit Excluding red meat may help.
b.. Patients with IBS-type symptoms may benefit from pinpointing trigger foods through elimination diet. (See The Complete Guide to Food Allergy and intolerance by Professor Jonathan Brostoff and Linda Gamlin, Bloomsbury, £6.99.)

c.. Anti-inflammatories and painkillers may relieve joint and muscle aches. Drug therapies so far are 'uniformly disappointing', says the Gibson inquiry, but antiviral agents and interferons may prove helpful.

d.. Meditation aids relaxation.

e.. Acupuncture, reflexology and aromatherapy may relieve symptoms.

f.. Try gentle yoga (search Google for local classes).

g.. Follow short spurts of activity with rest.

h.. High levels of EPA (eicosapentaenoic) omega-3 fatty acids have benefited some sufferers. (See Chronic Fatigue Syndrome: a natural way treat ME by Professor Basant K Puri, Hammersmith Press, £14.99.)

Books mentioned are available from you-bookshop.co.uk; post-free, tel: 0870 162 5006LIFESUPPORTOr rather, not ...

ME is currently defined a psychosocial by the Department for Work and Pensions (DWP) and medical insurance companies - despite its World Health classification neurological disease - so patients are not entitled to the higher level of benefit payments. This is 'in the financial interest of both the DWP and the medical insurance companies' rather than the sick person, says the Gibson inquiry and these patients should be entitled to the higher rate.

E-mail Sarah at s.stacey@you.co.ukSarah reads all your e-mails but regrets that she cannot answer them all personally

Helpful websites

a.. Investinme.org - an independent charity campaigning for more biomedical research into ME, with excellent information for patients and carers.

b.. Professor Hooper's lecture, Engaging with ME, is available through
satori-5.co.uk/1_severe_me/prof_hooper_dvd.html

Thanks to our expertsProfessor Malcolm Hooper;Dr William Weir, tel: 020 7467 8478;Professor Jonathan Brostoff. tel: 020 7435 7106YOU 14 JANUARY 200763 ---------------------------------------------

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