Finally, a test and treat­ment are look­ing close for chronic fa­tigue syn­drome.

New Zealand Listener - - CONTENTS - by Ruth Ni­chol

Finally, a test and treat­ment are look­ing close for chronic fa­tigue syn­drome.

More than 50 years af­ter she first en­coun­tered what’s now known as chronic fa­tigue syn­drome, or myal­gic en­cephalopa­thy (CFS/ ME), How­ick GP Rosamund Vallings is con­fi­dent we’ll soon have a lab­o­ra­tory test to di­ag­nose the ill­ness – and drugs to treat it. “I’m full of hope,” says Vallings, who has worked with more than 3000 peo­ple with CFS/ME. “When you com­pare what we’re hear­ing about now with what was hap­pen­ing five years ago, we’ve made tremen­dous strides.”

Vallings is an ex­pert on the ill­ness, which is thought to af­fect up to 20,000 New Zealan­ders – some so severely they are com­pletely bedrid­den and need 24-hour care. She has at­tended dozens of in­ter­na­tional con­fer­ences on CFS/ME and re­cently pub­lished her third book on the sub­ject, The Pocket Guide to Chronic Fa­tigue Syn­drome/ME, to help GPs and pa­tients di­ag­nose and man­age the ill­ness.

Her in­ter­est in CFS/ME be­gan when she was a med­i­cal stu­dent in Bri­tain. She helped care for pa­tients suf­fer­ing from an ill­ness known as Royal Free dis­ease. They were mostly med­i­cal staff ex­pe­ri­enc­ing symp­toms such as pro­found tired­ness, cog­ni­tive dif­fi­cul­ties and mus­cle pain fol­low­ing a flu epi­demic at Lon­don’s Royal Free Hos­pi­tal.

Psy­chi­a­trists at­trib­uted their symp­toms to mass hys­te­ria, but even­tu­ally doc­tors re­alised that

Royal Free dis­ease was the same as a num­ber of other ill­nesses, all with dif­fer­ent names. They in­cluded Nightin­gale dis­ease (Florence Nightin­gale is thought to have had CFS/ ME), yup­pie flu and, in New Zealand, Ta­panui flu – named af­ter the Otago town where peo­ple de­vel­oped symp­toms of the ill­ness in the early 1980s.

“It’s been called just about every­thing – I think there have been about 20 dif­fer­ent names,” says Vallings, who uses the CFS/ME hy­brid to recog­nise the fact that the ill­ness is known as CFS in some coun­tries and ME in oth­ers.

Although CFS/ME was seen as a psy­cho­log­i­cal ill­ness for many years, doc­tors now re­alise it’s an im­mune-sys­tem con­di­tion. Vallings says it’s thought that peo­ple start ex­pe­ri­enc­ing symp­toms be­cause their im­mune sys­tem fails to switch off fol­low­ing an in­fec­tion or another health prob­lem, such as an ac­ci­dent or op­er­a­tion. In­stead,

it acts as if the in­fec­tion is still present.

“The dis­ar­ray of the im­mune sys­tem seems to be re­spon­si­ble for most of the changes in the body’s metabolism and chem­istry. As the years have gone by, par­tic­u­larly the past decade, the re­search has be­come very strong that it’s a phys­i­cal neu­ro­log­i­cal ill­ness.”

Vallings says re­search be­ing done around the world – in­clud­ing by Uni­ver­sity of Otago bio­chemist War­ren Tate – should even­tu­ally iden­tify the biomarker for CFS/ME, which will make it pos­si­ble to de­velop a lab­o­ra­tory test to di­ag­nose it.

In the mean­time, di­ag­nos­ing the ill­ness is largely a process of elim­i­na­tion. That can be time-con­sum­ing and ex­pen­sive, in­volv­ing blood tests and re­fer­rals to med­i­cal spe­cial­ists such as rheuma­tol­o­gists and neu­rol­o­gists to rule out other pos­si­ble causes.

CFS/ME can some­times be con­fused with other con­di­tions, but ev­ery­one di­ag­nosed with the ill­ness shares a core symp­tom – post-ex­er­tional malaise (PEM), which oc­curs af­ter rel­a­tively low-key phys­i­cal or men­tal ex­er­cise. Peo­ple with PEM feel ex­hausted, and they have other symp­toms such as mus­cle pain, headache, dizzi­ness, sore throat and “brain fog”.

There is no cure for CFS/ME, but it is pos­si­ble to man­age the ill­ness by not over­do­ing things, hav­ing good sup­port, avoid­ing stress and get­ting enough sleep. Younger peo­ple are more likely to re­cover than older peo­ple. The oe­stro­gen boost that comes with preg­nancy helps many women, as does tak­ing the pill or – for older women – hor­mone re­place­ment ther­apy.

“What I like to say to peo­ple is that re­cov­ery is pos­si­ble,” says Vallings, “although you never know whether some­one has to­tally re­cov­ered – re­lapses can oc­cur down the track.”

The good news is that a num­ber of promis­ing drug tri­als are un­der way. Like oth­ers work­ing in the field, Vallings is par­tic­u­larly in­ter­ested in test­ing in Nor­way of the can­cer drug rit­ux­imab.

“The re­sults are go­ing to be un­wrapped in Oc­to­ber, and we’re hold­ing our breath that they will show the drug is ben­e­fi­cial.”

The good news is that a num­ber of promis­ing drug tri­als are un­der way.

THE POCKET GUIDE TO CHRONIC FA­TIGUE SYN­DROME/ME, by Rosamund Vallings (Calico Pub­lish­ing, $35)

Dr Rosamund Vallings: drug tri­als give her cause for hope.

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