Feedback from Stakeholder Engagement Workshop for the NICE guidelines on ME, Jan 2018

[Jonathan Edwards]

I take your point but I think there could be a 'Tell us honestly there's nothing' when it comes to RCT-backed therapies.

I think a tell us honestly petition might be good. I am pretty sure the majority of health care professionals involved do not get this. They feel they must offer treatment and hope. It may be the most powerful resisting force when it comes to getting CBT adnd GET removed rather than watered down. Patient members on the committee might find it useful to point to 500 signatures.

 

[Barry]

I think a tell us honestly petition might be good. I am pretty sure the majority of health care professionals involved do not get this. They feel they must offer treatment and hope.

I suspect this may not be a one-size-fits-all. Not everyone is emotionally resilient, and the truth for some (not all) may be too much for them. But I think the default should be to be open and honest, but be aware it might cause some individuals to give up on themselves - and for any one person it may vary also.

 

[Daisymay]

I suspect this may not be a one-size-fits-all. Not everyone is emotionally resilient, and the truth for some (not all) may be too much for them. But I think the default should be to be open and honest, but be aware it might cause some individuals to give up on themselves - and for any one person it may vary also.

I quite understand your point Barry, but PWME will very soon find out if they look online that CBT/GET are not curative or even helpful so they'll find the truth quite quickly and better they do that than take part in a course of CBT/GET which may cause them appreciable harm, plus depress them when they fail to improve.

 

[Barry]

I quite understand your point Barry, but PWME will very soon find out if they look online that CBT/GET are not curative or even helpful so they'll find the truth quite quickly and better they do that than take part in a course of CBT/GET which may cause them appreciable harm, plus depress them when they fail to improve.

Sorry yes, I'd inadvertently dropped into generic mode, thinking not just of ME, but all manner of devastating diagnoses.

 

[Dr Carrot]

I quite understand your point Barry, but PWME will very soon find out if they look online that CBT/GET are not curative or even helpful so they'll find the truth quite quickly and better they do that than take part in a course of CBT/GET which may cause them appreciable harm, plus depress them when they fail to improve.

I think this is possibly more nuanced than illustrated here.

I was diagnosed in the last two years, and it took me a fair bit of digging before it was clear that GET didn't work. Indeed, the fact that it's on the NHS website means you're far more likely to take that as a trustworthy source than many ME forums, particularly with the latter's habit of often discussing many quack therapies in the same space.

I also think that simply saying "there is nothing" can, as @Barry said, be devastating for many people who are already dealing with a crippling illness. Encouraging management methods rather than "nothing to see here" is surely a better optioN?

 

[Sasha]

I think this is possibly more nuanced than illustrated here.

I was diagnosed in the last two years, and it took me a fair bit of digging before it was clear that GET didn't work. Indeed, the fact that it's on the NHS website means you're far more likely to take that as a trustworthy source than many ME forums, particularly with the latter's habit of often discussing many quack therapies in the same space.

I also think that simply saying "there is nothing" can, as @Barry said, be devastating for many people who are already dealing with a crippling illness. Encouraging management methods rather than "nothing to see here" is surely a better optioN?

My suggestion was for a campaign for NICE to be willing to 'Tell us honestly there's nothing' as far as RCTs providing evidence for any effective treatment for ME/CFS goes. The purpose would be to tell them that we don't want to be lied to and they shouldn't be afraid to say that CBT/GET don't work (many doctors appear reluctant to say they can't help).

There's nothing in that to say that PWME shouldn't be encouraged to pace themselves and use other management techniques.

 

[Dr Carrot]

My suggestion was for a campaign for NICE to be willing to 'Tell us honestly there's nothing' as far as RCTs providing evidence for any effective treatment for ME/CFS goes. The purpose would be to tell them that we don't want to be lied to and they shouldn't be afraid to say that CBT/GET don't work (many doctors appear reluctant to say they can't help).

There's nothing in that to say that PWME shouldn't be encouraged to pace themselves and use other management techniques.

Ah I see - thanks for clarifying, makes sense

 

[MEMarge]

My 16 year-old daughter would have been distraught to be told there's no cure, when she was first diagnosed.
Having a close friend of the family with ME, who has worsened significantly over the last 20 years, we were very keen to describe it as post-viral fatigue initially.
I also keep up with current science and we are all hopeful for better treatments.
Maybe we were fortunate that by the time we were seen at GOSH we were aware re GET and CBT. We could also clearly see that the idea of her illness being the result of deconditioning and false illness beliefs was totally ridiculous. It was obvious that there was a biomedical illness.

 

[Alice]

Very interested in this topic of "OI in PwME" (from recent experience) but will take it away to another thread in Symptoms....... somehow .......may need techie help.......please?!

Edit - ohhh, managing the tech stuff, slowly......

Given that the clinics and the currently issued advice is harmful doesn't it fail 100% of pwME?

Exercise can help some people but the NICE issue is that because they don't do any physical functional capacity they have no idea who is suitable for it etc...and they aren;t monitoring or manging it.

 

[Sean]

A regular general health check for ME patients is a good idea. One of the more serious consequences of ME symptoms is that they are likely to mask the early symptoms of other unrelated diseases. How many serious diseases, including potentially fatal ones, start with a vague pain or tiredness, or headaches, etc? ME patients could well be losing the critical window of opportunity for early diagnosis and effective treatment of those other diseases.

I am also all for the medical profession learning when to say:

Sorry, we don't have any answers or cures in your case. We will do what we can to provide symptomatic relief and general support.

 

[alex3619]

Perhaps we should ask for a guideline that simply says that there is no robust scientific evidence that any particular management strategy leads to improvement.

This is actually the case. Things can help though. Yet there are inadequate numbers of quality clinical trials to show that. We know that, as patients, but its hard to prove to a medical standard.

Now some individuals have done very well on a great variety of treatments, from drugs including antivirals and immune modulators, to vitamins and herbs. Yet none of that will impress an advisory body without appropriate large scale clinical trials.

Ampligen came close to meeting that standard, but missed out by a narrow margin the last time there was a vote.

 

[alex3619]

I quite understand your point Barry, but PWME will very soon find out if they look online that CBT/GET are not curative or even helpful so they'll find the truth quite quickly and better they do that than take part in a course of CBT/GET which may cause them appreciable harm, plus depress them when they fail to improve.

A doctor can also say "There are lots of things we can do to help but right now there is no cure and we can only treat symptoms." This is accurate, starts out on a positive, and does not give false hope or bad advice.

 

[Trish]

There are loads of chronic conditions for which doctors cannot offer a cure, but can offer symptomatic treatment, monitoring, and management advice. Asthma, diabetes, arthritis, the autoimmune conditions, ....

Why can't ME be handled the same way.

After diagnosis, a doctor should be able to offer - trials of different medications to help with symptoms for sleep, pain, etc, management advice to pace carefully, a heart rate and step monitor to help with this, and support with employers, schools, benefits and sick notes, home visits for the severely affected. And an annual checkup for possible other conditions and referrals to specialists for anything that arises that is outside the GP's scope.

Surely this is what is offered to diabetes and asthma patients, why not to us too. Why fob us off with crap psychotherapy which is a waste of money as well as useless?

Why is ME any different from these other conditions?

Sorry, can't even remember what this thread is about. Probably not relevant. Early morning rant over.

 

[Amw66]

There are loads of chronic conditions for which doctors cannot offer a cure, but can offer symptomatic treatment, monitoring, and management advice. Asthma, diabetes, arthritis, the autoimmune conditions, ....

Why can't ME be handled the same way.

After diagnosis, a doctor should be able to offer - trials of different medications to help with symptoms for sleep, pain, etc, management advice to pace carefully, a heart rate and step monitor to help with this, and support with employers, schools, benefits and sick notes, home visits for the severely affected. And an annual checkup for possible other conditions and referrals to specialists for anything that arises that is outside the GP's scope.

Surely this is what is offered to diabetes and asthma patients, why not to us too. Why fob us off with crap psychotherapy which is a waste of money as well as useless?

Why is ME any different from these other conditions?

Sorry, can't even remember what this thread is about. Probably not relevant. Early morning rant over.

I think this is a huge point. The condition label effectively writes you off with some doctors.
Our GP is trying to be helpful - in part i think because my daughter is young, and in retrospect the practice were awful when my son had post viral fatigue.
My aunt who is bedbound and has other ( treatable) issues cannot even get a home visit and her GP has told her " there is nothing i can do for you"- we live within 40 miles of each other but in different health trust areas.
Management and monitoring are key to having some capacity to improve function.

 

[arewenearlythereyet]

I would have much preferred a doctor to have been straight with me. Instead I got GET and a total disinterest from my GP once he had referred me to the CFS clinic. Once the clinic ditched me after a year (standard practice) I was effectively on my own with the GP response being..."do you want to be referred back to the CFS clinic then?" when I went back for symptom relief. I'm sure that's not a rare occurrence for PWME in the UK.

I dont think most people would be bothered to research GET and CBT. I went straight to the NHS website for my research during the 9 month diagnosis, which said that the prognosis was good and GET would sort me out. By the time I had had the other diseases eliminated (which is a roller coaster in itself), I was champing at the bit to get my "treatment". I don't do social media and didn't have time to wade through a load of fake stuff on the Internet being brain fogged and still working, so I only found out GET was not a good idea by doing it.

So yes, devastating as it is I would have preferred to have been told there is no cure and the only option is management. Sometimes "shit happens"... there is no sugar coating for devastating news and as @Trish says earlier, why is ME so special that we have to be wrapped up in cotton wool and sent to some clinic that doesn't prescribe and test instead of being helped to manage the condition?

If the guidelines stay as they are and the NHS website stays as it is, I'm sure a load of people will fall into the same trap as I did.

"Most people with CFS get better over time, although some people don't make a full recovery. It's also likely there will be periods when your symptoms get better or worse. Children and young people with CFS/ME are more likely to recover fully."

Taken from
https://www.nhs.uk/conditions/chronic-fatigue-syndrome-cfs/

 

[Invisible Woman]

Sorry, we don't have any answers or cures in your case. We will do what we can to provide symptomatic relief and general support.

A doctor can also say "There are lots of things we can do to help but right now there is no cure and we can only treat symptoms." This is accurate, starts out on a positive, and does not give false hope or bad advice.

There are loads of chronic conditions for which doctors cannot offer a cure, but can offer symptomatic treatment, monitoring, and management advice. Asthma, diabetes, arthritis, the autoimmune conditions, ....

So yes, devastating as it is I would have preferred to have been told there is no cure and the only option is management. Sometimes "shit happens"... there is no sugar coating for devastating news and as @Trish says earlier, why is ME so special that we have to be wrapped up in cotton wool and sent to some clinic that doesn't prescribe and test instead of being helped to manage the condition?

There is no reason why the medical profession can't be truthful in a sensitive manner.

When I was diagnosed I had a very demanding job with sometimes long and unpredictable hours. I was the main breadwinner.

For me, managing my expectations would have been enormously helpful. Because my expectations weren't managed, I couldn't manage the expectations of my boss and my family.

Everyone is asking you when you are gonna get stuck back in and all you can say is I don't know? Maybe next week? Then next week comes and there's no difference. It's a huge amount of pressure.

It adds to the strain on relationships with bosses and spouses and everyone else.

If we were given the truth we could manage th situation much better, much earlier on and that's better for us, our families and our employers.

Eta - I respect that it's obviously much different with children - in that case the parents or guardians need to have their expectations managed.

 

[Sasha]

Maybe the campaign should be 'Tell us honestly that CBT and GET don't work'. More precise, less likely to distress patients (especially new ones).

 

[Keela Too]

After diagnosis, a doctor should be able to offer - trials of different medications to help with symptoms for sleep, pain, etc, management advice to pace carefully, a heart rate and step monitor to help with this, and support with employers, schools, benefits and sick notes, home visits for the severely affected. And an annual checkup for possible other conditions and referrals to specialists for anything that arises that is outside the GP's scope.

Surely this is what is offered to diabetes and asthma patients, why not to us too. Why fob us off with crap psychotherapy which is a waste of money as well as useless?

Why is ME any different from these other conditions?

Sorry, can't even remember what this thread is about. Probably not relevant. Early morning rant over.

Very good rant Trish, but why wait til "after diagnosis" to give the advice?

Sure, it may be unwise to diagnose a patient with ME when they are only in the first few weeks of experiencing problems, BUT early advice such as you list could be excellent as a precautionary measure - until such times as things become more clear.

Cancer patients are told they have suspected cancer before they go for further tests - and during that time they get treated as seriously as if they had a cancer. In time it will become clear whether they have it or not - but even if they are found to be in the clear, they are told how sensible it was to get everything checked. Quite a contrast to how ME patients are treated.

 

[Keela Too]

There is no reason why the medical profession can't be truthful in a sensitive manner.

When I was diagnosed I had a very demanding job with sometimes long and unpredictable hours. I was the main breadwinner.

For me, managing my expectations would have been enormously helpful. Because my expectations weren't managed, I couldn't manage the expectations of my boss and my family.

YES! "Managing Expectations" ... such a valid point.

 

[Trish]

Very good rant Trish, but why wait til "after diagnosis" to give the advice?

Good point. I would amend that to 'as soon as ME/CFS is suspected'. Is that better?