Severe difficulties with eating in ME/CFS

[MrMagoo]

If using cyclazine to tolerate feeding is necessary that’s a big old problem

 

[Jonathan Edwards]

None of this is necessary. It is all caused by delusional folk beliefs held by DOCTORS for Gods sake. Doctors and psychologists. People who are supposed to be intelligent and caring. Instead this system of starving people and torturing them is something they lobby for.

I still disagree. The delusional beiliefs are held by the majority of the general public so will be held by all sorts of health staff.

There is a problem with starving and torturing patients but it is often assumed to be the problem in all cases without adequate evidence. What gets reported in social media is often only half the story.

 

[hotblack]

I still disagree. The delusional beiliefs are held by the majority of the general public so will be held by all sorts of health staff.

Can you explain what it is you are disagreeing with?

Things may be more complicated than expressed on social media but I think the experience all of us have is off neglect by medics. Inexcusable neglect. There is zero reason for defence given what we all face whenever trying to access care. These cases are an extension of that.

Are you playing devil’s advocate or something else? I’m really trying to understand your position more because it confuses me at times,

 

[Jonathan Edwards]

Can you explain what it is you are disagreeing with?

No. I would need to refer to specific circumstances and that is against forum rules.

I get information through back channels from patient advocates who say 'hold your horses, things are more complicated'. I cannot pass on confidential information but what I hear makes sense.

 

[hotblack]

No. I would need to refer to specific circumstances and that is against forum rules.

Fair enough

 

[V.R.T.]

The delusional beiliefs are held by the majority of the general public so will be held by all sorts of health staff.

The delusional beliefs here have been legitimised and amplified by every health institution imaginable. Just because the BPS narrative stems from the 'it's all in your head' bollocks that people have believed since time immemorial is no excuse.

It is as if instead of combating climate change denial or vaccine misinformation, scientists lobbied the BBC to stop mentioning climate change or telling people they should get their vaccines,throwing all their professional weight behind it.

There is no excuse for the sort of negligent and ignorant treatment that we have read about on here lately. Professionals should not be acting in such a manner. It is a case of insanity on an institutional scale.

 

[hotblack]

I agree @V.R.T.

None of this is necessary and medics could stop it, it really is that simple. We all experience different levels of this daily and some of us have experienced awful things in hospital and there’s never anything learnt, never apologies, never reflection. If our condition was accepted and people were doing their job we would have all these cases collated and the scale and pattern of the problem would be clear.

And to be honest anything else having what looks like a ‘well it’s more complicated’ argument seems like an excuse to cover up for failure rather than to confront it. I’m sure that’s nobody’s intention here but it absolutely is part of the defence used by those failing us and I think that context is important.

 

[Jonathan Edwards]

The delusional beliefs here have been legitimised and amplified by every health institution imaginable. Just because the BPS narrative stems from the 'it's all in your head' bollocks that people have believed since time immemorial is no excuse.

Nobody is disputing that.

But what I think people may miss is that those charged with looking after patients may not be BPS people at all. If there is nobody in a hospital with any commitment to ME/CFS patients are likely to end up under the care of doctors who have no idea what to do other than a sense that they need to try to keep the patient alive. They have to seek advice from whoever presents themselves as authoritative. It doesn't help that some who show up spout pseudoscientific nonsense at them. Or that others who sound more plausible follow a bPS line.

When you find yourself in a situation where you are charged with keeping someone alive and nobody can give clear advice but you know you have to do something you don't always end up doing what is best. I am just arguing that channelling anger aginst professionals who have never expected to look after ME/CFS and are caught up in the web of other people's ignorance and conceit may not be a good idea.

 

[Trish]

I haven't followed the details of any specific cases, this comment is about the general situation people with very severe ME/CFS face in the UK, particularly those unable to eat.

I have just been looking at the NICE guidelines section on severe and very severe ME/CFS.
https://www.nice.org.uk/guidance/ng...e-for-people-with-severe-or-very-severe-mecfs
It has some sensible suggestions about providing low stimulus environments and listening to the patients needs and brief guidelines on nutrition including that some need enteral feeding.

But the section also talks about referring to physio or OT to make energy management plans:

1.17.9 When agreeing energy management plans with people with severe or very severe ME/CFS (and their family or carers, as appropriate), take into account the need to make any changes in smaller and any increases (if possible) much slower.

and has a section on CBT:

1.17.13 Healthcare professionals delivering CBT to people with severe or very severe ME/CFS should adjust the process and pace of CBT to meet the person's needs. This might include shorter, less frequent sessions and longer-term goals.

I can see why hospital doctors with no experience with ME/CFS may be confused and think they have to call in therapists and get patients planning increases in activity and having psychological therapy.

Both activity planning and CBT are totally inappropriate for someone with very severe ME/CFS, especially someone in hospital in urgent need of nutritional support and in need of an environment that minimises stimulus.

 

[Jonathan Edwards]

Where I differ is bringing up any other excuse than this being a complete failure of the medical teams and the NHS.

We don't differ on that.

 

[hotblack]

Both activity planning and CBT are totally inappropriate for someone with very severe ME/CFS, especially someone in hospital in urgent need of nutritional support and in need of an environment that minimises stimulus.

I find it telling though that doctors invariably read the bit about CBT and activity planning but ignore the bit about making accommodations and providing low stimulus environments.

 

[hotblack]

We don't differ on that.

How do we change it without unequivocal recognition of the problem? No ifs, no buts, no get outs for people. I suppose I’ve become more hardline again after trying to interact with the NHS. I have an idealistic view of how things could work when I’m at arms length, then when I need them or try to work with them proactively it quickly becomes clear they are not listening.

 

[MrMagoo]

Frankly, unless somebody comes along and says we have a VS patient who is actually in fact sat up in bed eating Egg and Chips every day, I’m inclined to believe the info that they are being mistreated at times.
Even if they’re not being mistreated all the time.
And if Sonya Choudhury is making statements and as reported by The Times she is concerned then I’m concerned.
I don’t doubt there’s a lot we don’t know (which is correct) but there’s clearly a problem.

 

[MrMagoo]

I saw a Broken Battery has posted a shout out for any Dr UK or even consider in Western Europe who could assist with specific eating arrangements.
Thee is more info on the go fund me. I don’t want to post much detail here in case it’s breaking the rules as it’s quite specific.

 

[bicentennial]

London leads the UK, and some say London leads the world. London has a pan-London referral network for hospices to provide palliative care, making it available both in the home and in the hospice.

Where there are no appropriate local hospice beds available, another hospice with appropriate beds available may arrange for the out-of borough funding. I think this used be called an extra-contractual referral

In case it is not easily found, here is the:

London: All Age Pan-London Specialist Palliative Care Referral Form

St Josph's Hospice may be conducive, and provide tube-feeding and medication in such circumstance. It is the oldest hospice in England to remain within its founding framework. In Hackney E8

Life limiting illness incudes for disabling long-term illness, not just for terminal illness.

Palliative care can help control, manage and adjust to such disabling symptoms (not just in terminal stages). Eg in the marked, unpredictable and intermittent relapses of longterm illness increasing dependence.

As happens in long-term neurological and other conditions. ME/CFS surely remains classified as a neurological illness until found otherwise.

 

[N_Dina]

I have asked this question before in a different topic (devoted to a case study about AAG), but would like to raise it here as well: why are ME/CFS patients not routinely tested for autoimmune autonomic ganglionopathy? This condition implies severe dysautonomia, abnormalities in pupillometry, sweating abnormalities and severe dysfunction in GI motility. It is regarded as rare, but not that many doctors have heard about this condition in order to refer patients to a knowledgeable neurologist. The blood test for ganglionic ACHR receptor antibodies is positive in 50% of the cases. The test is included in the Mayo dysautonomia blood panel.

 

[Jonathan Edwards]

This condition implies severe dysautonomia, abnormalities in pupillometry, sweating abnormalities and severe dysfunction in GI motility.

I don't think there is any suggestion that people with ME/CFS have these symptoms. As Nightsong has pointed out, the picture of 'POTS' is not actually dysautonomia in this sense. In POTS the autonomic nervous system seems to be working - in responding to standing with tachycardia. My memory is that people with dysautonomia often have uncontrollable diarrhoea, which is not a feature of ME/CFS. And so on.

 

[N_Dina]

I don't think there is any suggestion that people with ME/CFS have these symptoms. As Nightsong has pointed out, the picture of 'POTS' is not actually dysautonomia in this sense. In POTS the autonomic nervous system seems to be working - in responding to standing with tachycardia. My memory is that people with dysautonomia often have uncontrollable diarrhoea, which is not a feature of ME/CFS. And so on.

Thank you very much for pointing this out.

Yes, I do now understand that this blood pressure and heart rate orthostatic response is preserved in patients with POTS and/or ME/CFS. It’s other components of autonomic failure (severe GI dysmotility in the form of severe constipation & early satiety) in people with AAG which made me interested in this condition.

 

[Jonathan Edwards]

(severe GI dysmotility in the form of severe constipation & early satiety)

That sounds a bit like Hirschsprung's disease with ganglionic agenesis (rather than diarrhoea in the Shy-Drager picture). Clearly this is a complicated field. I think the simple point is that people with ME/CFS don't really have generalised dysautonomia - of whatever sort.

 

[Formerhuman]

I don't think there is any suggestion that people with ME/CFS have these symptoms. As Nightsong has pointed out, the picture of 'POTS' is not actually dysautonomia in this sense. In POTS the autonomic nervous system seems to be working - in responding to standing with tachycardia. My memory is that people with dysautonomia often have uncontrollable diarrhoea, which is not a feature of ME/CFS. And so on.

Do some patients with Sjogren's have dysautonomia?