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MAGICAL MEDICINE: HOW TO MAKE AN ILLNESS ... - Invest in ME

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Quotations from the doctors’ SSMC Manual<br />

384<br />

This 48 page Manual consists of just 8 content pages, the rema<strong>in</strong>der be<strong>in</strong>g n<strong>in</strong>e appendices.<br />

From the M<strong>in</strong>utes of the jo<strong>in</strong>t meet<strong>in</strong>g of the Trial Steer<strong>in</strong>g Committee and the Data Monitor<strong>in</strong>g and Ethics<br />

Committee held on 27 th September 2004, it is a matter of record that Professor Peter White expressed concern<br />

that participants receiv<strong>in</strong>g only SSMC might <strong>in</strong>terpret it as the ‘go away’ arm of the Trial.<br />

The two “Contents” pages list the follow<strong>in</strong>g:<br />

“Background to the PACE trial”<br />

“Patient Cl<strong>in</strong>ic Leaflet (PCL) – its use <strong>in</strong> SSMC”<br />

“Tim<strong>in</strong>g of visits”<br />

“SSMC – FAQ” (Frequently Asked Questions).<br />

“Appendix 1……Appendix 9”.<br />

Standardised Specialist Medical Care (SSMC) is def<strong>in</strong>ed on page 4 of the Manual: “SSMC is the standardised<br />

specialist medical care provided by the CFS/<strong>ME</strong> cl<strong>in</strong>ic doctor for patients who receive a diagnosis of CFS/<strong>ME</strong>”.<br />

“SSMC <strong>in</strong>cludes:<br />

• A positive diagnosis of CFS/<strong>ME</strong> and an explanation of the condition that is consistent with the Patient Care<br />

Leaflet (see Appendix 2) (emphasis added)<br />

• General advice on manag<strong>in</strong>g activity and stress and cop<strong>in</strong>g with the illness that is consistent with the Patient<br />

Cl<strong>in</strong>ic Leaflet (see Appendix 2) (emphasis added)<br />

• The prescription of medication for specific symptoms (such as simple analgesia, hypnotics, antihistam<strong>in</strong>es<br />

and antidepressants) if <strong>in</strong>dicated and agreed with the patient<br />

• Communication with…the participants (sic) General Practitioner<br />

• Monitor<strong>in</strong>g of the participants (sic) progress<br />

• A copy of the assessment letter will usually be sent to the participant, so long as they wish to receive it”.<br />

Thus the Fatigue Service cl<strong>in</strong>ic doctor is permitted to expla<strong>in</strong> “CFS/<strong>ME</strong>” only accord<strong>in</strong>g to the Wessely<br />

School beliefs set out <strong>in</strong> the Patient Cl<strong>in</strong>ic Leaflet and to give medical advice only accord<strong>in</strong>g to the Wessely<br />

School beliefs.<br />

Moreover, there is significant published evidence that antidepressants are <strong>in</strong>effective <strong>in</strong> <strong>ME</strong>/CFS, for<br />

example, “Randomised, double‐bl<strong>in</strong>d, placebo‐controlled study of fluoxet<strong>in</strong>e <strong>in</strong> chronic fatigue syndrome”;<br />

Jan HMM Vercoulen et al; Lancet 1996:347:858‐861: “Antidepressant therapy is commonly used (<strong>in</strong> CFS).<br />

However, there has been no randomised, placebo‐controlled double‐bl<strong>in</strong>d studies show<strong>in</strong>g the effectiveness of<br />

antidepressant therapy <strong>in</strong> CFS. We have carried out such a study to assess the effect of fluoxet<strong>in</strong>e (Prozac) <strong>in</strong> depressed<br />

and non‐depressed CFS patients…There have been anecdotal reports that fluoxet<strong>in</strong>e is poorly tolerated by patients with<br />

CFS. In our trial, 15% of fluoxet<strong>in</strong>e‐treated patients withdrew because of side effects, a higher withdrawal rate than <strong>in</strong><br />

fluoxet<strong>in</strong>e trials <strong>in</strong> depressed patients on the same regime” and the authors concluded: “Fluoxet<strong>in</strong>e <strong>in</strong> a 20mg daily<br />

dose does not have a beneficial effect on any characteristic of CFS”.<br />

There is also evidence that people suffer adverse reactions to such medication; <strong>in</strong>deed, <strong>in</strong>tolerance to alcohol<br />

and medication (especially to drugs act<strong>in</strong>g on the central nervous system) is a feature that the renowned<br />

neurologist Professor Charles Poser of Harvard described as pathognomonic of <strong>ME</strong>/CFS at the 1994 Dubl<strong>in</strong><br />

International Symposium held under the auspices of the World Federation of Neurology.

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