(Amendments to) NHS Plus leaflets on Occupational aspects of CFS/ME

(Amendments to) NHS Plus leaflets on Occupational aspects of CFS/ME

From Neil Riley, Chair ME Association

Dear all,

I have now received the final drafts of the occupational leaflets on CFS/ME from Dr. Ira Madan for NHS Plus.

I believe they are a huge improvement on the original leaflets. Dr. Madan has listened to what we have said and accepted a good deal of it. The leaflets are now more “measured” and, although not as balanced as we might wish, are much improved.

I list below some of the changes so that you can see at a glance what we have achieved:-

Phrases removed from the original leaflets

1 Several sentences have been removed from the section “What causes CFS”. These contained speculations on what caused it – such as “psychological and social factors”. That has now gone.

2. In the sub-heading “Management – A Biopsychosocial Approach” – we have removed the words “Biopsychosocial Approach”

3. The words “supported by good quality evidence” have been removed from the “Management” sub-section.

4. There has been an extensive reworking of the section on CBT with much of what we objected to being removed.

5. In the section on “Graded Exercise Therapy” we have got the words “in receipt of sickness benefit at the onset of the programme” removed.

6. In the section “Advising Patients” there has been extensive reworking to the benefit of patients. The advice to “stay at work even if they feel tired” has been removed and the words in bold have been replaced by “provided this does not aggravate their symptoms”

Phrases/sections added to the original leaflets

1. “Myalgic Encephalitis” [sic] has been added to the description of the illness in the leaflets so that the illness is now called “CFS/ME “rather than just “CFS”

2.”Post-exertional “replaces the word “fatigue”

3.”Clinical diagnostic criteria” now replaces the words “strict diagnostic criteria.”

4. In the section “What causes CFS/ME “we have managed to get two important sentences included:-

They are:-

“Most people who develop CFS/ME are previously healthy individuals with no significant medical or psychiatric history”

“As CFS/ME is poorly understood, the definition encompasses a heterogeneous group of clinical presentations and not all patients will respond to the management strategies mentioned here.

5. In the section “Other Interventions” there was a statement that “As with many other chronic illnesses concurrent psychiatric conditions, especially depression are common and should be identified and treated”. This has now been amended to read “As with many common psychiatric conditions, especially depression, concurrent psychiatric conditions, especially depression, may occur. Where present they should be identified and treated”.

[Ed:There appears to be an error in Mr Riley’s transcription in point 5 above.]

6 As mentioned above the CBT section has been extensively reworked. We managed to get the words “but it (CBT) is not always effective” to bring balance to this section and also the words “CBT does not work well where the patient still shows signs of a current infection”.

7. In the section on Graded Exercise Therapy” we have persuaded NHS Plus to include the sentence:-

“Although some RCT’s show evidence of improved functional capacity for work and reduced fatigue, some patients experience a significant deterioration in symptoms with this intervention”

Note:-This is a significant acknowledgement by the NHS that GET has dangers to people with CFS/ME.

8. In the section on “Pacing” we have obtained some good amendments. For example, the inclusion of a sentence:-

“Patient feedback indicates that pacing is an acceptable and very helpful form of activity management”

Note:- that is another acknowledgement that the NHS has committed to writing.

9. In the section “Other Interventions” the words “many months in bed after the acute stage of the illness” have been included. We wanted this in to define what the NHS meant by “Prolonged rest”

10. In the section “Advising Patients” we have managed to get the following words inserted:-

“Each patient should be treated as an individual case because of the difficult nature of this illness”

In addition there is an important alteration concerning a patient seeking early retirement. Previously the advice was that all rehabilitation strategies – CBT and GET- had to be “explored”. This rather suggested that the patient had to try CT and GET. Our suggestion to replace this by “all appropriate management strategies have been discussed and agreed with their medical professional” has been accepted.

11. We have managed to get two new sections included. The first mentions “Income Protection Schemes” and the second “Help from The DWP and Other Government Agencies”

12. Amazingly, in the employee leaflet there was no description of CFS/ME. We have managed to have this included. There was also no section about “Will people with CFS/ME get better?” – there is now!

13. The section on “Should I be at work with my symptoms” is a huge improvement thanks to our suggestions. The overall tone has changed and it is much more human and sympathetic to the patient.

14. The section on “What else could be considered in planning my return to work” is a complete rewrite. The advice is much more balanced, stressing that in managing the illness it is up to the patient to retain control of their management programme. Although reference to CBT and GET is still there, those treatments are clearly shown to be at the choice of the patient. Moreover there are now caveats about those treatments that were not there before – eg. “GET has been shown to be helpful for some individuals but must be approached with caution”. In addition the leaflet now states that “People with ME/CFS ( and yes, that is a mistake – CFS/ME – on their part”) -report finding pacing very helpful”. This section is a great improvement and a great achievement.

15. The section “Could I take ill-health requirement” has been improved. The previous statement that “CBT and GET increase the likelihood of people with CFS/ME returning to work” has been watered down by our suggestion of the word “may” before the word “increase” . The word “explore” has been replaced by the word “consider” – this means that a patient will not have to try CBT and GET, only consider them as therapies.

16. The reference to GET now incorporates the phrase “and given on a one to one basis if possible”.

17. In the original leaflets there was reference to the “occupational health professional” actually giving treatment, advising on the patient’s fitness for work and ensuring that illnesses that can cause fatigue are treated. We pointed out this was not the job of an OHP and that the NICE Guideline gave this role to a Health Professional. This has been accepted and the OHP can now simply “assist” the employee in arranging a management strategy and liaise with the GP or treating practitioner.

18. The hugely dangerous words advising employers to encourage employees “to persevere” with their treatment, have been removed. It is of course not the job of an employer to take an active management role in the personal health care of his employee.

19. We have got a new sentence added to the section “Recovery from CFS/ME”. This is:-

“However, anyone severely affected by the illness for a prolonged period of four years or more has a poor chance of recovery and this should be taken into account when reviewing ill health retirement,”

I hope that you agree that the leaflets are immensely better, thanks to all the work that we have done. Patients with ME/CFS are much more likely now to have a fairer/better opportunity of dealing with some of the practical difficulties in regard to their chances of coping in the world of work.

Neil Riley

Chairman of the ME Association



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