Graham Norton in The Telegraph Agony Column replies to someone with ME

[charles shepherd]

"Most patients will show some degree of improvement over time..." SUSTAINED improvement?

On what do you base this claim, @charles shepherd?

A large amount of anecdotal evidence over the past 30 years from:

patients

clinicians

MEA members and patient surveys

Plus personal experience

I would say that where a degree of improvement occurs it is not often sustained. Most people reach a 'glass ceiling' of improvement and from then on their illness follows a course of relative remission and relapse.

 

[charles shepherd]

charles shepherd, thank you for writing but I do feel those of us who don't make improvements after years , deteriorate or go very up and down are ignored when it's said ''most' improve. I wonder whether 'most' is true. Seems we don't know yet enough make that statement...

Probably worth reading in full what we said about Prognosis in the CMO Report (>>page 7)

http://www.meassociation.org.uk/wp-content/uploads/CMO-Report-2002.pdf

I think it's still a fairly accurate and helpful summary of Prognosis

 

[Mrs Sowester]

I am more introverted than extroverted, and enjoyed living alone for several years pre-marriage when I was healthy. I could likely adapt to this situation, if required.

However, I occassionally wonder. What happens if my husband dies before me -- a distinct possibility since he is several years older. We have no children, no younger family members (except distant second and third cousins who we rarely see), and no younger friends. Who will step in to provide the assistance I gave my mother in the last years of her life? I sometimes imagine being a future news story -- an old woman who dies alone in her home, and nobody notices until months later. I've considered "adopting" a grandchild, but where to find a compatible situation -- a family who would appreciate some attention and assistance from an older couple, but without expectations we'd be unable to satisfy based on my limitations.

Sorry to be off topic but, "What happens if my husband dies before me" Now that is my 2nd biggest fear; I send him to the doctors to have his moles checked, cholesterol checked, nag him to distraction about stopping smoking and driving carefully...poor bloke!

But, back to the topic - well done and big thanks to Graham Norton. I like to believe he writes the responses, his written word is very similar to his spoken phrasing in my opinion.

 

[Invisible Woman]

Thanks for your letter to Graham @charles shepherd.

Most patients will show some degree of improvement over time...but...research evidence indicates that only a small minority of patients recover to previous levels of health and functioning

I can't argue with this. However, from my experience of those who have no concept of how truly awful this condition really is, they seem to take this as a statement that most patients will become significantly better. And in that case why am I still housebound and at times bedbound....?

Mind you, it may be that these same people will twist everything you say no matter how you say it.

 

[anniekim]

Probably worth reading in full what we said about Prognosis in the CMO Report (>>page 7)

http://www.meassociation.org.uk/wp-content/uploads/CMO-Report-2002.pdf

I think it's still a fairly accurate and helpful summary of Prognosis

Thank you. I have just read. I suppose it's human to relate something to one's own experience and as I have just declined over the years and talk to many others with similar experiences it doesn't feel like most, but appreciate it could be more overall are not like us, though I don't think we are insignificant in numbers.

I do appreciate you writing to him to educate him a bit more. I like GN. I would still have preferred when you wrote most make some improvement you had pointed out that even improvements are up and down but thank you nonetheless.

 

[digital dog]

Thanks Charles for writing to Graham.

 

[justy]

@charles shepherd - thanks for writing a tactful letter to GN. I have gone to the link you provided for prognosis and cant find it anywhere in the 93 page document. I also have concerns about the notion that 'most people improve'. This is not my experience and I have not seen this in other patients.

As a long term PWME, I have years of personal experience and my experience is that whilst some people appear to have improvements initially, after the initial collapse, if you look at the illness over a period of say 20 years, in those that don't get totally better, the rest appear to gradually get worse as time goes on, becoming more disabled, but perhaps managing it better?

Many people also recover, only to relapse many years later. I myself had an almost complete remission for 8 years before relapsing into severe ill health, that 7 years later I have never recovered from. Some aspects of my illness are better (mildly) but others continue to get worse. Or is it just that I have become so used to it that I manage my health and my emotions better and so in fact am not better at all? (as Bell found in long term patients who felt they had 'recovered')

 

[charles shepherd]

@charles shepherd - thanks for writing a tactful letter to GN. I have gone to the link you provided for prognosis and cant find it anywhere in the 93 page document. I also have concerns about the notion that 'most people improve'. This is not my experience and I have not seen this in other patients.

As a long term PWME, I have years of personal experience and my experience is that whilst some people appear to have improvements initially, after the initial collapse, if you look at the illness over a period of say 20 years, in those that don't get totally better, the rest appear to gradually get worse as time goes on, becoming more disabled, but perhaps managing it better?

Many people also recover, only to relapse many years later. I myself had an almost complete remission for 8 years before relapsing into severe ill health, that 7 years later I have never recovered from. Some aspects of my illness are better (mildly) but others continue to get worse. Or is it just that I have become so used to it that I manage my health and my emotions better and so in fact am not better at all? (as Bell found in long term patients who felt they had 'recovered')

Justy

Try again

>>

http://www.meassociation.org.uk/wp-content/uploads/CMO-Report-2002.pdf

and go to Chapter 1, Section 1.4.3 on page 7 of the actual report

The exact words in the CMO report are: Most (i.e. 50% +) patients will show some degree of improvement over time

And this is what I would normally say to people at the time they are diagnosed with ME/CFS

There's clearly a difficult balancing act between being positive and optimistic about prognosis and being realistic about that fact that some people do not improve at all, some will progressively deteriorate, and a significant minority will become severely affected

But I think this is an honest and sensible thing to say to people in our current state of knowledge/evidence

 

[justy]

@charles shepherd I will start a new thread for people to discuss the issue of prognosis, rather than continue the discussion here. Thanks for the instructions on how to find the info in the document.

 

[charles shepherd]

I think if people are going to comment on the section on prognosis in the 2002 CMO report (which I helped to write) it would be worth looking at the whole section (it is on page 7 in the report) along with all the conclusions and recommendations contained in the report

Link to CMO (= DoH Chief Medical Officer at the time - Professor Sir Liam Donaldson) report on MEA website:
http://www.meassociation.org.uk/wp-content/uploads/CMO-Report-2002.pdf

Two other important points:

1 This report was prepared for the CMO during the period 1999 - 2002 and the Working Group used the best available 'evidence' at the time

2 The 'evidence' we used to prepare this major report came from published research and randomised controlled trials; clinician evidence and (very important) patient evidence

At the end of the process the psychiatrists on the Working Group refused to endorse the final document and walked away because they believed it was too biased by some of the patient evidence - especially the patient evidence on CBT, GET and Pacing provided by the MEA. So probably worth having a look at the section on CBT, GET and pacing as well…..

 

[manna]

I go for most getting slowly worse. My experience is that in some ways it has gotten easier but really that's more to do with my body giving up the fight a little. Overall I feel less discomfort but have more issues, like with my chest etc. I believe the CNS shuts down to some extent or gets weaker. To get to near recovery has for me involved a period of going back through the hellish way I felt in the first few years...as if the more discomfort I felt was an indication of a body still fighting. It's ambiguous like many aspects of M.E I think. My mother is less flexible than me (she doesn't have M.E.) yet she is "healthier". It's my belief that if my CNS were suddenly to be at full voltage I would feel a lot blocks, aches and pains. Feeling less discomfort in some ways could then indicate a worsening of your general condition.