UK:ME Association funds research for a new clinical assessment toolkit in NHS ME/CFS specialist services, 2023

Spoiler: more of the survey

18. Overall, how do you rate the service?

• very good
  
  
• good
  
  
• neither good nor bad
  
  
• poor
  
  
• very poor

19. What was good about the service?

20. What was not so good/helpful about the service?

21. How could the service be improved?

22. Staff were knowledgeable and up-to-date about ME/CFS

• This is not important and/or relevant to me
  
  
• Strongly agree
  
  
• Agree
  
  
• Disagree
  
  
• Strongly disagree

22. Staff were friendly and approachable

• This is not important and/or relevant to me
  
  
• Strongly agree
  
  
• Agree
  
  
• Disagree
  
  
• Strongly disagree

23. I was listened to, and believed

• This is not important and/or relevant to me
  
  
• Strongly agree
  
  
• Agree
  
  
• Disagree
  
  
• Strongly disagree

24. I received information about what to expect from the service

• This is not important and/or relevant to me
  
  
• Strongly agree
  
  
• Agree
  
  
• Disagree
  
  
• Strongly disagree

25. Attention was paid to my physical, psychological/ emotional, and social needs

• This is not important and/or relevant to me
  
  
• Strongly agree
  
  
• Agree
  
  
• Disagree
  
  
• Strongly disagree

26. I was given information about who to contact, and how to contact them if I had any questions

• This is not important and/or relevant to me
  
  
• Strongly agree
  
  
• Agree
  
  
• Disagree
  
  
• Strongly disagree

27. The service was flexible to meet my needs. For example, flexible time and duration of appointments, appointments in person or by phone or video call, or adapting the environment for sensory sensitivities, or being able to lie down or sit with feet raised.

• This is not important and/or relevant to me
  
  
• Strongly agree
  
  
• Agree
  
  
• Disagree
  
  
• Strongly disagree

28. What accommodations/flexibility did you need?

29. Is there anything else you would like us to know about the accommodations you need to attend the service?

30. I had opportunity to ‘meet’ others with ME/CFS. This may be in person or online.

• This is not important and/or relevant to me
  
  
• Strongly agree
  
  
• Agree
  
  
• Disagree
  
  
• Strongly disagree

31. I was given information about relevant support groups and charities.

• This is not important and/or relevant to me
  
  
• Strongly agree
  
  
• Agree
  
  
• Disagree
  
  
• Strongly disagree

32. I was asked whether I would like more information or to revisit discussions.

• This is not important and/or relevant to me
  
  
• Strongly agree
  
  
• Agree
  
  
• Disagree
  
  
• Strongly disagree

33. I was given sufficient time and support to explain my situation and the difficulties I was having.

• This is not important and/or relevant to me
  
  
• Strongly agree
  
  
• Agree
  
  
• Disagree
  
  
• Strongly disagree

Spoiler: and more

SECTION 3: UNDERSTANDING ME/CFS


34. I received a clear diagnosis, or the diagnosis was confirmed.

• This is not important and/or relevant to me
  
  
• Strongly agree
  
  
• Agree
  
  
• Disagree
  
  
• Strongly disagree

35. My illness, symptoms and disabilities were explained in a way I could understand.

• This is not important and/or relevant to me
  
  
• Strongly agree
  
  
• Agree
  
  
• Disagree
  
  
• Strongly disagree

36. I was helped to explain my illness and limitations to other people, e.g. family.

• This is not important and/or relevant to me
  
  
• Strongly agree
  
  
• Agree
  
  
• Disagree
  
  
• Strongly disagree

37. I was given information and an explanation about the treatment/management approach.

• This is not important and/or relevant to me
  
  
• Strongly agree
  
  
• Agree
  
  
• Disagree
  
  
• Strongly disagree

38. I was given information and support to make sense of ME/CFS and how it caused my symptoms and activity limitations.

• This is not important and/or relevant to me
  
  
• Strongly agree
  
  
• Agree
  
  
• Disagree
  
  
• Strongly disagree

39. The interaction and impact of ME/CFS and my other health conditions were explored.

• This is not important and/or relevant to me
  
  
• Strongly agree
  
  
• Agree
  
  
• Disagree
  
  
• Strongly disagree

Spoiler: and more

SECTION 4: CARE AND SUPPORT PLAN


40. I was helped to create/ develop a care and support plan.

• This is not important and/or relevant to me
  
  
• Strongly agree
  
  
• Agree
  
  
• Disagree
  
  
• Strongly disagree
  

41. I was helped to work out my needs and priorities.

• This is not important and/or relevant to me
  
  
• Strongly agree
  
  
• Agree
  
  
• Disagree
  
  
• Strongly disagree
  

42. I was helped to identify and set my own goals.

• This is not important and/or relevant to me
  
  
• Strongly agree
  
  
• Agree
  
  
• Disagree
  
  
• Strongly disagree
  

43. Is there anything else you would like to tell us about identifying needs, priorities, and goals?

44. I learned to:


45. recognise my symptoms.

• This is not important and/or relevant to me
  
  
• Strongly agree
  
  
• Agree
  
  
• Disagree
  
  
• Strongly disagree
  

46. identify my activity limitations.

• This is not important and/or relevant to me
  
  
• Strongly agree
  
  
• Agree
  
  
• Disagree
  
  
• Strongly disagree
  

47. avoid going past my energy limits or ‘overdoing it’.

• This is not important and/or relevant to me
  
  
• Strongly agree
  
  
• Agree
  
  
• Disagree
  
  
• Strongly disagree
  

48. balance rest and activity.

• This is not important and/or relevant to me
  
  
• Strongly agree
  
  
• Agree
  
  
• Disagree
  
  
• Strongly disagree
  

49. identify and manage fluctuations, setbacks and relapses.

• This is not important and/or relevant to me
  
  
• Strongly agree
  
  
• Agree
  
  
• Disagree
  
  
• Strongly disagree
  

50. cope with social isolation and changes to relationships.

• This is not important and/or relevant to me
  
  
• Strongly agree
  
  
• Agree
  
  
• Disagree
  
  
• Strongly disagree
  

51. I received advice and treatment (where possible) to manage or improve my symptoms.

• This is not important and/or relevant to me
  
  
• Strongly agree
  
  
• Agree
  
  
• Disagree
  
  
• Strongly disagree
  

52. I received information and advice about how to cope with:


53. personal activities of daily living (e.g. washing, dressing, toileting)

• This is not important and/or relevant to me
  
  
• Strongly agree
  
  
• Agree
  
  
• Disagree
  
  
• Strongly disagree
  

54. home (e.g. housework, cooking, gardening, DIY) life

• This is not important and/or relevant to me
  
  
• Strongly agree
  
  
• Agree
  
  
• Disagree
  
  
• Strongly disagree
  

55. family life/ leisure (e.g. parenting, caring for elderly relatives, hobbies, leisure)

• This is not important and/or relevant to me
  
  
• Strongly agree
  
  
• Agree
  
  
• Disagree
  
  
• Strongly disagree
  

56. mobility

• This is not important and/or relevant to me
  
  
• Strongly agree
  
  
• Agree
  
  
• Disagree
  
  
• Strongly disagree
  

57. work/ education (e.g support from employer/ college, reasonable adjustments, occupational health, Union, Access to Work)

• This is not important and/or relevant to me
  
  
• Strongly agree
  
  
• Agree
  
  
• Disagree
  
  
• Strongly disagree
  

58. I was helped to obtain aids and equipment I needed. This may include referral to, or advice about how to access other services.

• This is not important and/or relevant to me
  
  
• Strongly agree
  
  
• Agree
  
  
• Disagree
  
  
• Strongly disagree
  

59. I was helped to obtain the social care I need (e.g. carers, home help). This may include referral to, or advice about how to access other services.

• This is not important and/or relevant to me
  
  
• Strongly agree
  
  
• Agree
  
  
• Disagree
  
  
• Strongly disagree
  

60. I received information, advice and support about relevant work/ disability/ sickness benefits. This may include referral to, or advice about how to access other services.

• This is not important and/or relevant to me
  
  
• Strongly agree
  
  
• Agree
  
  
• Disagree
  
  
• Strongly disagree
  

61. I received information, advice and support about how to manage work/ education. This may include referral to, or advice about how to access other services.

• This is not important and/or relevant to me
  
  
• Strongly agree
  
  
• Agree
  
  
• Disagree
  
  
• Strongly disagree
  

62. I received information, advice and support for family/carers. This may include referral to, or advice about how to access other services.

• This is not important and/or relevant to me
  
  
• Strongly agree
  
  
• Agree
  
  
• Disagree
  
  
• Strongly disagree
  

63. I was given information about how/ where I could get on-going support after discharge.

• This is not important and/or relevant to me
  
  
• Strongly agree
  
  
• Agree
  
  
• Disagree
  
  
• Strongly disagree
  

64. I was given information about who to contact for health care after discharge.

• This is not important and/or relevant to me
  
  
• Strongly agree
  
  
• Agree
  
  
• Disagree
  
  
• Strongly disagree
  

 

Spoiler: and more

SECTION 5: OUTCOME OF THE TREATMENT FOR YOU


65. How well can you manage your ME/CFS since attending the service?

• much better
  
  
• better
  
  
• the same
  
  
• worse
  
  
• much worse

66. How confident are you about managing your symptoms since attending the service?

• much more confident
  
  
• more confident
  
  
• the same
  
  
• less confident
  
  
• much less confident

67. How confident are you about managing your energy levels since attending the service?

• much more confident
  
  
• more confident
  
  
• the same
  
  
• less confident
  
  
• much less confident

68. How well do you balance rest and activity since attending the service?

• much better
  
  
• better
  
  
• the same
  
  
• worse
  
  
• much worse

Spoiler: finale

SECTION 9: FINAL SECTION


69. Is there anything else about the service you would like us to know?

70. Is there anything else about the assessment you would like to tell us?

 

Symptom contingent pacing is not pacing up.

Symptom contingent pacing, as I understand it, is pacing guided by symptoms, both immediate increases in symptoms and using past knowledge of our bodies reaction to exertion and how much we can do with increasing symptoms without triggering delayed PEM. The aim is to try to run your life within your current limits, guided by symptoms, and not to try to push the envelope.

Pacing up is what a lot of clinicians think is pacing but isn't, using basic pacing methods such as diaries, heart rate or symptom contingent pacing until you establish a baseline, then keep pushing at your limits to try to do more.
A typical example: I was told to keep a diary, find my baseline, then add an activity each week. That's pacing up, or GET lite. It's not full blown GET, since the increments are more flexible and to some extent guided by pacing methods, but always with pressure from the clinician to keep trying to do more.

 

Still using the 'baseline' terminology' unhelpfully.
And an assumption that at baseline one has no or few symptoms. Not my experience, and I suspect not the experience of many, especially those more severely affected.

I think it's insulting/harmful to write a survey that suggests there is such a thing as a stable baseline that everyone can reach with a bit of professional guidance. Many are very sick all the time, many are bedbound, in awful pain, with severe sensory sensitivities, OI, headaches, difficulty eating, etc. It seems to suggest that if you pace effectively you can reach some sort of symptom free Nirvana. So unrealistic for most of us.

It reads to me like a survey designed for the mildest ME/CFS.

 

I assume these are intended to find out whether the clinics are following the NICE guidelines. Which is OK, but I think it should also include something to explain to participants at the end of the survey that some of these are asking about things the clinic should not be doing.
A previous questionnaire as part of this project elicited responses quoted in the MEA report suggesting pwME had appreciated learning more about their ME/CFS from taking the survey. Unless some explanation is given about which of the above are what the clinic should and should not be doing, there is I think a risk of misunderstanding.

 

That assumes the pwME has sufficient knowledge to assess whether the information they were given was accurate and up to date. Given the problems with some of the BACME materials, this is highly questionable. How is the pwME supposed to answer this?

Combining these on one question is unhelpful. The answer may be different for each. For example, the pwME may only want help with physical symptoms, and find questions about psychological and emotional matters, or attempts to impose psychological interpretations and therapy by the clinician inappropriate and intrusive.

Damn goal setting again. Why do they think it's in any way appropriate for pwME to be setting goals, apart from getting sufficient help and rest?

• These seem to be OK, and straightforward, though they imply that all the aims are possible to achieve.

 

Can’t even get basics of pacing terminology right
Can we have our money back

 

I forgot to comment on these questions. They should not be there. As we know, there is currently no explanation of what causes ME/CFS. We know for some people it's triggered by an infection, and that exertion makes symptoms worse and can trigger PEM. We don't know why. If clinics are giving the BACME style bogus explanations about HPA axis or whatever, they are misinforming pwME.

The heading is wrong. There is no treatment. I don't think pacing should be called rehab or an intervention either. Asking people a range of questions about how well they manage, without also acknowledging that for many people it's a case of muddling through as best we can and pacing when able to, the set of questions feel to me like, have you passed the test, are you getting it right, judging people.
They can ask if the information the pwME was given is helpful, but not about how 'well' they are applying it without caveats.

 

I find it odd that the questionnaire is only to be answered, and therefore commented on helpfully, by people who have attended specialist clinics in the last 3 years. Given that the NICE guideline was published in late October 2021, ie less than 3 years ago, that may include a few who attended before the guideline publication, so it is presumably not just about whether the guideline is being implemented. There were other questions that I didn't bother to copy, including asking what sort of clinic and when attended, how long ago diagnosed etc.

So is it a questionniare intended for the NHS to find out whether clinics are following NICE, or is it for local health authorities to check their clinics, or for service evaluation or to help individuals get care they need but missed out on, or what?

If it's for service evaluation, it's far too long.

 

So we know from @Trish and @Kitty comments that q38 can be interpreted in at least 2 ways. What is “ make sense of ME/CFS” really intended to mean here?

Can anyone actually make sense of ME/CFS? Isn’t that the problem?