United Kingdom: ME Association news

[Trish]

Spoiler: Anecdote. How not to provide home care for severe ME/CFS.

In about 2011 I was told the local ME clinic did home visits for severe ME. My daughter and I were both signed up for it. It consisted of several visits from the same OT who ran the group sessions at the clinic for mild/moderate. My daughter had attended these about a decade earlier, it was the same as BACME still describe.

All she did on our severe ME sessions at home was the same completely useless diary keeping with noting types of activity. Her only advice after we had filled in our diaries was to add an extra activity each week. The only other offer she made was for someone to come and teach us a relaxation technique, or to loan us a relaxation CD. We declined. I asked whether, as an OT, she could advise on home adaptations. She said no that's not her job, that's the job of the green uniform OT's.

There was no offer to help with benefit applications or arranging care. The only doctor input was a visit from a GP 'with an interest in ME' who was completely clueless and seemed only interested in asking a few brief questions to confirm diagnosis.

It was a huge waste of NHS money. We clearly understood our illness better than they did, though the OT had been running the ME clinic for decades. She has been a active member of BACME and is co-author on at least one of their current documents.

I fear that with the perpetuation of the BACME clinics for mild and moderate, the only offering for severe will be as I describe.

 

[Kitty]

This is, in my experience, what the BACME clinics do. Exactly as you describe.

But my point was that it doesn't include severe patients, and it doesn't start from the position that there's no treatment.

The problem isn't the healthcare professionals or the clinics, it's BACME's fiction that they understand ME/CFS and can offer therapies. Drop all that and everything changes. Most of the harms stop, and intelligent HCPs might even begin to explore what people need to live with the disease.

 

[hotblack]

Yeah understood @Kitty and I know your good intentions here. I was a bit unwise of me to respond to your post because I was expressing more general thoughts on this area. Sorry about that.

I just feel at some point we're gonna have to rip the plaster off to make things very clear to as many people as possible what the situation is and not allow little roots of the problems of the past to resprout. Some of the ideas and perceptions are like knotweed. A big reset is needed and I strongly believe the best way to do this is to focus on v severe, then move outwards from there.

 

[Jonathan Edwards]

I just feel at some point we're gonna have to rip the plaster off to make things very clear to as many people as possible what the situation is and not allow little roots of the problems of the past to resprout.

It looks from the meeting today that the DHSC have already decided to keep the old model, no digging required, just water the shoots. And I see people with ME/CFS being let down by advocacy groups and charities all around - wittering on about irrelevances, or their own little projects.

But there has to be a way forward at some point.

 

[hotblack]

But there has to be a way forward at some point.

*sigh*

I never got knotweed off my mums allotment and now we can’t get this invasive and damaging pest out of our lives. Napalm maybe?

 

[hotblack]

ME/CFS advocacy groups and charities

 

[V.R.T.]

It looks from the meeting today that the DHSC have already decided to keep the old model, no digging required, just water the shoots. And I see people with ME/CFS being let down by advocacy groups and charities all around - wittering on about irrelevances, or their own little projects.

This is so incredibly disappointing to hear.

But there has to be a way forward at some point.

I hope you're right but it really seems like there is a lot of vested interest in keeping the status quo. And they are winning so far.

It's such an awful catch-22, can't move forward without a research breakthrough but they won't fund any research or set up anywhere academic doctors can regularly interact with pwME.

 

[V.R.T.]

A big reset is needed and I strongly believe the best way to do this is to focus on v severe, then move outwards from there.

Agreed. I just don't know how you make a healthcare system perpetually high on biopsychosocial bollocks see that.

If only more of us could protest.

 

[Kitty]

I just don't know how you make a healthcare system perpetually high on biopsychosocial bollocks see that.

I don't think we can. I keep thinking that whatever efforts we can make now should be in anticipation of a research breakthrough, since a disease modifying treatment is probably the only thing that will move the needle.

 

[Trish]

It looks from the meeting today that the DHSC have already decided to keep the old model, no digging required, just water the shoots. And I see people with ME/CFS being let down by advocacy groups and charities all around - wittering on about irrelevances, or their own little projects.

But there has to be a way forward at some point.

That felt like our last hope. It's devastating but also unsurprising. We are up against too many people with power. And I lay a significant amount of blame on the MEA with its active support of BACME clinics and its ridiculous funding of the Tyson clinical tool kit. How can we hope to get change for the better when the MEA collude with BACME against us.

 

[Jonathan Edwards]

That felt like our last hope. It's devastating but also unsurprising.

I think some messages are being heard, even if not acted on. The message about needing a severe service seems to be getting through.

But the DHSC people obviously buy in to PROMS - liking the idea of monitoring even if the monitoring is useless.

It is a pity that AfME are not really interested in this at all. I think the view is that the DHSC will produce whatever rubbish it is going to produce and it is more useful for AfME to spend time on their own support programme. The problem is that we don't know if that support program is sensible. Some of the services they have offered look to be run by doubtful people.

 

[V.R.T.]

I don't think we can. I keep thinking that whatever efforts we can make now should be in anticipation of a research breakthrough, since a disease modifying treatment is probably the only thing that will move the needle.

I agree. It's disheartening. But perhaps the breakthrough will come soon, as speculated.

 

[V.R.T.]

I don't think we can. I keep thinking that whatever efforts we can make now should be in anticipation of a research breakthrough, since a disease modifying treatment is probably the only thing that will move the needle.

What efforts should we be making to tbat end?

 

[hotblack]

The problem is that we don't know if that support program is sensible. Some of the services they have offered look to be run by doubtful people.

It’s not. I really like a lot of what AfME do but unless it’s changed significantly since my last contact with it has nothing of use for severe people but is useful for those who are mild/moderate and want and can afford to try out various off label things.

 

[hotblack]

And I lay a significant amount of blame on the MEA with its active support of BACME clinics and its ridiculous funding of the Tyson clinical tool kit. How can we hope to get change for the better when the MEA collude with BACME against us.

Agree. It’s all so disappointing.

 

[N_Dina]

If only more of us could protest.

I have been wondering if in Germany these are predominantly mild and moderate people who are protesting to raise awareness about ME. One of the fantastic things they have done is normalisation of the disease. Like raising awareness during the football matches, not just “liegend” protests on CFS/ME days in May and August.

 

[Felis Catus]

It is a pity that AfME are not really interested in this at all. I think the view is that the DHSC will produce whatever rubbish it is going to produce and it is more useful for AfME to spend time on their own support programme. The problem is that we don't know if that support program is sensible. Some of the services they have offered look to be run by doubtful people.

Another problem is that their services are private, with some limited bursaries available. So, people who've lost jobs due to ME/CFS are supposed to pay out of pocket to see someone from AfME services when they might not be getting enough in benefits to cover even the basic living costs.

 

[Nightsong]

It is a pity that AfME are not really interested in this at all. I think the view is that the DHSC will produce whatever rubbish it is going to produce and it is more useful for AfME to spend time on their own support programme

That is really quite extraordinary. They have an obligation to patients to get involved even if it is just to try to mitigate potential harms, and - if what is proposed does turn out to be psychobehaviourally oriented - to mobilise their resources in opposition to it.

 

[Jonathan Edwards]

They have an obligation to patients to get involved even if it is just to try to mitigate potential harms

In the past my understanding has been that AfME get government funding. If that is still the case they may be in a difficult position.

 

[Felis Catus]

It’s not. I really like a lot of what AfME do but unless it’s changed significantly since my last contact with it has nothing of use for severe people but is useful for those who are mild/moderate and want and can afford to try out various off label things.

When I saw them, they couldn't prescribe anything. I don't know how it's now but they used to send a letter to the GP with suggestions. My NHS GP is not keen on off-label prescriptions, so I guess I could've spent more money to see a private GP and then some more to pay for medications.