UK Government ME/CFS Delivery Plan (includes Attitudes and Education Working Group and Living with ME Working Group) and consultation

Tilly said:
1st there must be data. We have no data on numbers of those with ME or how long they have had the illness and what treatment they have had. These figures would speak for us and we need to make sure they are properly kept and overseen.
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I don't think it is that easy that numbers "speak for us", and even with a lot of work to make numbers seen healthcare can be slow to act. Take undernutrition for example, we are not lacking the numbers that this is a huge problem. The numbers (in my country) are easily available. The consequences are often presented together with the numbers, mentioning among other things the increased workload on healthcare workers when undernutrition is not treated. There have been campaigns to increase awareness. Still a huge problem.
 
Obviously this is just a general comment but university training (of Doctors) should align with NICE Guideline which (as per Jonathan's comment above) "got things about as right as one could hope I think".
So perhaps the charities should write to the Universities and highlight that they need to align with NICE Guideline and if they're aware of material which doesn't, then highlight that fact.
Possibly if you could identify the other "stakeholders" then cc to them e.g. Department for Health, APPG/s, whoever is responsible for ensuring Doctors have received appropriate training (pre-registration - GMC?), NHS England ---
 
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Tilly said:
It is a murky mess
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I understand they have a key role in making sure doctors are safe to practice - this is what they are absolutely failing to do with regard to ME patients and the long standing damaging GET disaster. Because they are 'respecting the right of a doctor to believe a disease does not exist' they are failing to take into account the risk of deterioration through GET and the huge file of GET harms, and in general terms, medicine today is utterly failing to recognise the harm caused by medical gaslighting of any kind in terms of breaking down family and carer relationships and often intense psychological stress caused. This, of course, does not seem to have been researched, because nobody would want to know what happens to patients once they leave a consulting room and go home to cynical, rejecting and blaming family members. I've seen people with ME neglected to a dangerous level by relatives who have believed the doctors when they were told there was nothing wrong with their relative.Relatives can be (wittingly or unwittingly) co-opted into supporting patients or just as easily abusing patients depending on what the doctor tells them. These are the safety issues the GMC and medicine in the UK generally seem to be ignoring?
 
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Lou B Lou said:
Now Pulse GPs say they should not have to have anything to do with us because there are no treatments for ME. And claim that GPs are being gaslighted too! They refuse to read NICE 2021. They refuse to have their education updated. They refuse to let go of decades old misinformation. The resistance in those Comments is extreme and very disturbing.


"...The government should suggest ME type patients go straight to self help groups and online advice. Pretending we can help is demoralising for both the patients and the GPs and is gaslighting both groups"
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What a terrible attitude. Straight up dereliction of duty, as if our situation is any comparable to theirs. There is zero equivalency and calling their own situation gaslighting is massively insulting to us, who are losing our lives over this, while all they have is, what, they feel a little bit bad for a few minutes? And just plain wrong, that's not even what it means, damnit. They're in fact gaslighting us here, as if the reason they do nothing is because of this cheap excuse.

There are many diseases with no treatments. It's a terrible excuse to do nothing. The very same excuse that lead to having nothing. They need even more training than people understand. This is really awful and ableist. They have huge attitude problems.
 
AknaMontes said:
I understand they have a key role in making sure doctors are safe to practice - this is what they are absolutely failing to do with regard to ME patients and the long standing damaging GET disaster. Because they are 'respecting the right of a doctor to believe a disease does not exist' they are failing to take into account the risk of deterioration through GET and the huge file of GET harms, and in general terms, medicine today is utterly failing to recognise the harm caused by medical gaslighting of any kind in terms of breaking down family and carer relationships and often intense psychological stress caused. This, of course, does not seem to have been researched, because nobody would want to know what happens to patients once they leave a consulting room and go home to cynical, rejecting and blaming family members. I've seen people with ME neglected to a dangerous level by relatives who have believed the doctors when they were told there was nothing wrong with their relative.Relatives can be (wittingly or unwittingly) co-opted into supporting patients or just as easily abusing patients depending on what the doctor tells them. These are the safety issues the GMC and medicine in the UK generally seem to be ignoring?
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I just agree with every word.

I wonder if it isn’t giving in too soon to suggest,as it is
whenever patients and advocates explore the possibility, that we can’t find someone that this has happened to still living despite it alland with the record keeping ability to prove sequential consequences, who we could crowd fund to sue various health bodies around the NHS and under anonymity, eg patient ‘M.E,’ if desired publicise the case far and wide spending any other funds we can possibly raise/divert away from yet more charity based polite begging campaigns and spend it on publicists etc perhaps pool with LC communities with interest in not suffering same terrible fate, if it’s a shocking case and we’ve all heard them and the claimant still loses (the law isn’t fair) amongst the sneering and cheering public there would be I think many people who never realised how catastrophic the consequences of this variant of non treatment could be and who will see the wisdom in protecting themselves from this system,
and it will become just a little harder to deny harm and continue the status quo.

I do think in this current political climate in of NHS privatisation any flaws in the system will be seized upon by current and would be privatisation enthusiasts and beneficiaries on the right of the political spectrum, and that when that occurs people ostensibly on the left or liberal middle will blame patients for attacking the NHS at a time like this. But since fewer and fewer people are eligible to even become patients now, since rationing is coming for everyone the exclusion zone ever expanding, we will all be left with nothing if we don’t demand what we need before there is complete cultural acceptance that healthcare is only for the wealthy.

Maybe by this point all the Drs will have left the country for a more comfortable life elsewhere and the MRI machines will all have crumbled away. However even if we cannot get medical care we could have society stop trying to actively murder us and that would be something.
 
Amw66 said:
None here either I was hugely concerned about this 6 years ago - in reality that's not been a bad thing at all ..
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Sean said:
Yes, be careful what you wish for. Better no service than a useless one.

LC patients and advocates need to be a lot more aware of this problem then they currently seem to be.
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Yes, but thanks to the new NICE Guideline any new NHS "service" wouldn't have GET or CBT --- correct? So it could e.g. mirror Jonathan Edwards's description of the system that enabled him to make progress in arthritis i.e. a Doctor (Jonathan) with access to patients to enable research?
 
Dolphin said:
From ME Research UK:

“My full reality: the interim delivery plan on ME/CFS – Our response part 1” to Department of Health and Social Care (DHSC)

https://www.meresearch.org.uk/interim-delivery-plan-our-response-1/

“The plan suggests that failures in ME/CFS research are due largely to researchers themselves, rather than the chronic underfunding that has hampered them for years”
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As I have said before, this underfunding isn’t simply from taxpayer money; the amount that has been raised privately has also been relatively small given the numbers affected and how serious the illness is.
 
FMMM1 said:
So it could e.g. mirror Jonathan Edwards's description of the system that enabled him to make progress in arthritis i.e. a Doctor (Jonathan) with access to patients to enable research?
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Yes, but only if it does have doctors. Doctors with an interest in conditions like ME.

The trouble is that practitioners with six months' training are a lot cheaper in the short term, and the short term is all that seems to matter. We'll likely be stuck with this until the population starts demanding actual government instead of people dressing up and play-acting. (I'm not referring to any particular flavour of politics, the trend seems to have seeped everywhere.)
 
Kitty said:
Yes, but only if it does have doctors. Doctors with an interest in conditions like ME.

The trouble is that practitioners with six months' training are a lot cheaper in the short term, and the short term is all that seems to matter. We'll likely be stuck with this until the population starts demanding actual government instead of people dressing up and play-acting. (I'm not referring to any particular flavour of politics, the trend seems to have seeped everywhere.)
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I assume that you're talking about proposals to have Doctors who wouldn't meet current standards to be registered - correct?
Yes, I meant Doctors who would --- meet current standards to be registered!
All a bit academic since, despite the Long Covid issue, I'm guessing there's no money to pay a Doctor!

@Keela Too
 
Sean said:
Yes, be careful what you wish for. Better no service than a useless one.

LC patients and advocates need to be a lot more aware of this problem then they currently seem to be.
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Only the new ones tend to fall for it. It doesn't take long to see the naked wizard behind the scene, but at this point patients are seen as discredited, their opinions as worthless as our own.

There is an endless stream of new patients. Unfortunately, this is being exploited, possibly unwittingly, to maintain the lie that the useless clinics contribute anything else than the appearance of doing something. Not much more we can do about it than what we usually do: point out the truth.
 
FMMM1 said:
I assume that you're talking about proposals to have Doctors who wouldn't meet current standards to be registered - correct?
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I mean anybody with a bit of paper showing they've been on a course. It doesn't matter whether it was occupational therapy or psycho-something or Feng shui, as long as they're capable of reading the manual.

The purpose is to act out the Healthcare Provision sketch with your hair nice and neat, and dissuade people from costing any more money by turning up at the door again.
 
Kitty said:
I mean anybody with a bit of paper showing they've been on a course. It doesn't matter whether it was occupational therapy or psycho-something or Feng shui, as long as they're capable of reading the manual.

The purpose is to act out the Healthcare Provision sketch with your hair nice and neat, and dissuade people from costing any more money by turning up at the door again.
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Interesting. I assumed that these clinics were led by a Doctor in GB. Not clear what the purpose of having a clinic led by someone who isn't a Doctor is ---- weird to be frank.
 
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