Treatment Offered and Its Effects

---

8.1 Exercise

It would seem logical to assume that taking exercise to prevent deconditioning of muscles would guard against the worst damage that ME might do. However, many participants’ answers indicated quite the contrary, namely, that exercise can cause a decrease in muscle strength and a considerable increase in pain. Of the 144 who record having been given advice on exercise - including those advised by doctors of the “keep your chin up” persuasion to push themselves by going for long walks, swims, or bicycle rides - 59 (41%) report functional deterioration, in some cases very serious, following sustained, incrementally increased, physical exertion, while two suggested that forcing themselves beyond appropriate physical limits might well have been the cause of their illness becoming chronic. Even the most careful exercise regime, performed under the guidance of health professionals, appears in a number of cases to have been harmful.

Our impression from replies of respondents is that those who listened to their bodies in a regime of reasonable self-management fared better than those who undertook regimes which embraced, either implicitly or explicitly, the general principles of cognitive behaviour therapy. It is in “listening to the body” that some respondents seem to have found a way to make gentle exercise alternating with periods of rest work for them. Unfortunately, few of the respondents were given this advice. Furthermore, many people were given contradictory or no advice, or advice such as “push through the pain barrier”, which they consider did damage. What is clear, however, is that little information is available about the problem of management in relation to exercise.

8.1.1 Categories of advice

Tables 1 and 2 categorise the types of exercise participants were advised to take and the effect of these exercise programmes on their illness.

Table 1 The categories of exercise advice recorded in the returned questionnaires
Advice		No. Advised
1	Push as hard as possible without listening to body (swim/jog etc.)	23
2	Light push (e.g. get out of bed each day or do physio even if don’t feel up to it ) - this includes programmes of graded exercise, increasing each session, with aim to improve fitness, (again including programmes of even the gentlest physio)	56
3	Find your own balance/stay within body’s limits/use own judgement	21
4	More than 1 Advice: Contradictory - Push Hard/ Don’t Exercise at All	10
.	More than 1 Advice: Moderate - Graded Exercise/Own Judgement/Rest	12
.	More than 1 Advice: Various	11
5	Rest and/or relaxation exercises	5

Thirty three respondents either recorded that no advice was given, or did not give details. Twelve more considered the advice they were given to be inappropriate and therefore refused the programmes they were offered .

Table 2 Summary of the effects of exercise recorded by participants
Effects	No. Affected
Condition worsened	91
Condition improved	16
No change	10
Variable results	11

8.1.2 Comments from the questionnaires

Below is a fairly representative selection of quotations from answers to question 10.9 of the questionnaire:

a) What advice have you been given about exercise ?
b) What effect did it have on your condition ?

(The questionnaire number is given in each case.)

Question No.	Advice	Effects
59	Gentle physio	Severe deterioration
63	Physiotherapy	Caused relapse
72	Hospital exercise & hydrotherapy	Made her much worse
82	Physio & own gentle exercise	Made her so ill she had panic at the thought of going to do it
114	Extensive physio	Legs and hands seized up, unable to walk since
147	Graded physio	Extreme deterioration
155	Asked GP for physio referral. In hospital did hydrotherapy	Went into hospital with relapse. Caused further relapse, longer stay
157	When unable to walk advised to push myself, go through the "pain barrier" like an athlete	Made me very much worse; I was falling over in great pain while trying to do that.
161	Programme of graduated activity and cognitive therapy under a psychiatrist who was researching CFS	Slow progress for 6 months and then bad relapse until sicker than before
167	Physio made her [adolescent girl] take 4 steps: A consultant told her that “she would die if she didn’t start to walk” and told us [parents] to make her walk, “to increase her endorphins”.	Screamed with pain. The physio made her much worse.

8.2 Diet

Table 3 Diet prescribed by a health professional
Type of Diet	No. of People
Type Unclear	21
Exclusion: of Yeast/Sugar	8
Exclusion: of Sugar or Sugar/Wheat/Dairy	8
Exclusion: of Wheat or Wheat/Dairy	7
Exclusion: of Dairy	3 = 26
Anti-candida/Anti-fungal	20
Exclusion - not specified	7
Elimination	5
Tube Fed	5
Rotation	4
High Carbohydrate	2
Stone Age	2
Organic	1
Total following a diet:	93

Respondents were asked to describe any diet they had followed, whether prescribed by a health professional (Table 3), or followed outside medical advice (Diet B) and a summary of the responses is shown in Tables 3 and 4.

Results of following a prescribed diet were seldom recorded. One person reported “very good” results, one that no benefit had been noted, and two that their diets made them worse. Three mentioned diets they no longer followed. This, together with the fact that such a large proportion of respondents had tried diets at one time or another, indicates an area where more detailed research could profitably be done in the future.

Eighty one respondents had not followed any prescribed diet.

Table 4 Diet followed outside professional advice
Type of Diet	No. of People
Type Unclear	31
Exclusion: No Sugar & no Yeast/Gluten/Milk/Caffeine	11
Exclusion: No Wheat & No Wheat/Dairy/Gluten	9
Exclusion: No Caffeine & No Caffeine/Alcohol/Fat	3
Anti-candida/Anti-fungal	20
Hay Diet	8
Low Fat	7
Vegetarian	4
Organic	4
Elimination	3
Stone Age	2
Rotation	1
Total following a diet:	102

Eleven people reported that the self-imposed diet they had followed did not help, 2 reported a diet they had tried in the past, implying that they received no benefit from it. However, it is significant that 102 people were following diets of their own volition.

8.3 Alternative Therapies

The determination to find some route back to health is indicated again by the numbers who reported trials of a wide variety of alternative therapies, as table 5 demonstrates. Records of exercise programmes attempted (noted in section 7.1), not to mention the courses of prescribed drugs, mineral supplements and vitamins recorded in the questionnaires (details of which will be given in a future report), suggest that the label of therapeutic nihilism, which has been applied to people suffering form ME, is entirely inappropriate for this group of patients. Moreover, the costs of some of these therapies demonstrate even more clearly how keen patients are to find a way out of their present constricted life styles and back to health. Indeed, serious concern has been expressed by many involved in the welfare of patients with ME concerning the large amounts of money some have spent in their desperate search for a cure. Many of these patients are living on benefits, the partners of some have had to give up full time employment to care for them, and some have crippling debts they have been trying to pay off over many years to therapists, healers, dieticians, etc. Details of these problems also will be given in future reports.

Table 5 Alternative therapies tried

No. of People who tried treatment: (& commented on result:).
Type of Alternative Therapy	Total No.	Good Result	Bad Result	Nil Result
Homeopathy	71	13	-	18
Acupuncture	42	4	4	9
Reflexology	30	3	-	10
Osteopathy	26	5	-	4
Healer (Faith/Colour or Counselling)	20	8	-	4
Herbals	19	3	-	6
Hypnotherapy	11	1	-	3
Allergist	8	-	-	1
Chinese Herbs	7	-	1	-
Aromatherapy	7	1	-	2
Shiatsu	6	-	1	-
Naturopath	6	2	-	-
Chiropractor	5	-	-	-
Massage	4	-	-	1
EPD	4	1	-	-
Transcendental & other Meditation	3	2	-	-
Unspecified or 1-off mention	25	2	-	-
Number of separate treatments	292	.	.	.

Only just over 20% of respondents recorded no attempt at alternative therapies.

Table 6 Costs of programmes of alternative therapy
Amount spent on alternative therapies	No. of people
£10 - £999 (*NB under-estimate because weekly costs have been included, where the overall amount spent could have been considerably more .)	94
Over £1,000	9
No costs because: no treatment	35
No costs because: treatment obtained through NHS	3
No costs because: money refunded because treatment had no effect	1
Costs not stated	24

9 Conclusion

In one short report it has proved impossible to analyse and provide a commentary on the mass of information which continues to build up in the database. Clearly, future annual updates will, first and foremost, present a developing picture of both the aetiological features and the neuro-sensory progress of the illness, especially as it is shown in the numerical sections of the questionnaire, but other sections which will also feature prominently in the future are:

• attitudes of medical practitioners, other health workers, social services, etc.;
• accessibility of medical advice and monitoring when patients are no longer capable of attending a clinic;
• management strategies which have proved helpful;
• the prescription of drugs, vitamins, minerals, etc. and their effect on the progress of the illness;
• the burden of care shouldered by relatives and friends;
• problems encountered in getting benefits and allowances, etc.;
• other financial matters, e.g. cost of obtaining a diagnosis, management advice and treatment;
• development of symptoms at later stages of the illness.

The initial analysis suggests that, in a percentage of cases of M.E./CFS, chronicity, of a scale not previously documented, is a significant feature of the disease. This analysis also suggests that certain physical and cognitive disabilities increase with increasing chronicity, but both these trends will be analysed in greater detail as monitoring continues and as the size of the sample grows (a steady flow of enquiries continues and, from among these, people fulfilling CHROME’s criteria for the issue of questionnaires are found). Because of the controversial nature of attitudes to patients, it seems certain that many more people who would fulfil the criteria have not gained diagnoses and have not yet heard of CHROME. One of the most difficult questions posed for the project is how further hidden cases may be unearthed.

---

CHROME - Case History Research On M.E.