NICE are NOT going to publish the new guidelines tomorrow

[Woof!]

Of all 236 studies that indicated that exercise training (GET) and cognitive behavioral therapy (CBT) were treatments for ME / CFS, the quality of the evidence was rated "very low" for 205 studies and "low" for the remaining 31 studies.

I'd sure like the BBC to ask Dr. Goddard to respond to this so he can get his facts right!

 

[Woof!]

If anyone does contact their MP it's worth pointing out that the NHS should not be spending money on treatments (GET, CBT) that have been found to be ineffective by NICE. And that it was set up to stop the NHS wasting money in that way.

Good advice.

 

[hapl808]

In all fairness, it was just willful ignorance. Which often results in cruelty, but most of those physicians weren't trying to do me any harm of course (although there is at least one whose demise I would celebrate).

My guess is they truly believed what they told me. I believed them because a) it was better than 'you're just going to be limited and you need to cut down your activity until you're not crashing' and b) you have an illness that we're aware of but cannot treat.

Sometimes doctors can sell us on what we want to hear. Surgeons do it all the time - it pays for their boats and camera gear, even if it leaves their victims with no better prognosis. The studies may show their surgeries have more chance for complications than improved outcomes, but restraint doesn't pay for those boats.

Anyways, while I was worried (which is why I was asking the question), I chose to believe what multiple doctors told me. The only doctor who told me I wasn't physically well enough for physical activity was a non-MD alternative herbal practitioner. I chose to believe the evidence based neurologists, rheumatologists, GPs, neuromuscular, etc. They all told me there was absolutely no danger in pushing through in response to my very specific questions. Because those of us that have been ill for years or decades can have a sense of something 'wrong' or dangerous, but we also get gaslit to think that maybe we're just being overly worried.

Clearly I wasn't being worried enough.

And then they wonder why we don't trust the medical establishment. Because willful ignorance can do just as much harm as intentional cruelty.

 

[hapl808]

I'd sure like the BBC to ask Dr. Goddard to respond to this so he can get his facts right!

I think he has a Twitter. It would be nice if 1000 people asked him.

I really despise these people.

 

[Bronc]

Just not too long ago, I spoke to staff at Action for ME to ask if there is anything we patients can do that could be of significance.

The feedback was;

• Some patients are approaching their MP’s.
• Some are contacting journalists.

According to Action for ME they have received a high volume of requests from journalists wanting to speak to patients about their experiences. At the moment they have more journalist interest then people/cases they can refer to.

They said on their website there is ‘share your experience’ section where they would like more people to tell their stories, in the hope they can be used as media case studies for interested journalists to contact.

https://www.actionforme.org.uk/research-and-campaigns/share-your-story/

I was also told at the moment that Charity is hoping the pause is because NICE is trying to get those opposed to the new guidelines to come round to it. But they will consider the next course of action if it's not the case.

The current approach is calm as they are conscious of how ME patients have been painted out to be angry activists in the past.

I’ll join some UK Facebook groups to see what others think about peaceful demonstrations taking place where we also highlight we aren't an angry mob, but informed patients wanting access to better healthcare.

I think we need a multi-pronged approach. I would encourage all to call NICE as I did yesterday to let them know how I felt. Sign petitions, write to MP's by all means.
I think a protest outside the NICE offices in London and Manchester would be a great idea, even if its a small number of people. The media generally portray anyone protesting against the establishment on any issue in a negative light. I know I've been on hundreds of protests over the last 30 years on a wide range of issues. The issue is that such protests would generate publicity which NICE would be averse to.
I've written about and studied the history of the UK labour movement during my doctoral studies. Its very clear that all of the advances in democratic rights/living standards were not granted by benevolent rulers but had to be fought for by ordinary people coming together and taking action collectively. It is time for our community to say no more!

 

[Bronc]

Angry mobs tend to get more attention and results than polite, informed patients. Unfortunately many of us don't have the strength to stand up, let alone assemble an angry mob.

Signed, an American who would still be speaking with a British accent if it weren't for a series of angry mobs.

I really do take exception to the Action for ME stance on protests. I know from 30 years of activism taking part in hundreds of protests on a wide range of issues together with my doctoral studies on the history of the UK labour movement that the media rarely portray protests against the establishment in a positive light. Keeping our heads down out of fear of negative media plays into the hands of the medical establishment.
Public protests on the street get publicity and do bring pressure to bear. I'm really ill at the moment but would turn up to any protest in my wheelchair.

 

[Mary]

See this thread for petitions to sign urging the NICE guidelines be published now (see 1st and 4th posts in the thread for 2 separate petitions): Petition: Publish the NICE ME/CFS Guideline Now (MEAction) | Phoenix Rising ME/CFS Forums

 

[YippeeKi YOW !!]

I hope that you'll all forgive me for what appears to be crowing (it's not .... it's the sad acceptance of the old French saying, "The more things change, the more they stay the same"), but I knew, from the start of long COVID, where it was going to wind up and I just have to say it here. Mostly because I;m fighting fury and nausea at this decision, even tho I was sure it was comig .....

resistance to that being physical and not psychological has been building up over the months in the UK.

This is what I predicted in a thread here waaaay back when we were all starting to raise our hopes based on the emergence of the Long COVID 'phenomenon" ...

Looks like I've severely underestimated how far medical professionals will go to protect their own egos.

To the moon and back. As many times as it takes. Medicine is a business, and they'll do anything to protect theirs ....

Time to defund the NHS, it doesn't work and it apparently it never can.

Single payer health is like communism: looks great on paper, not so much in Real Life .... it ust devolves into a tight-knit little group that strenuously defends its turf and has little to no oversight ....

At least, if they were published, patients would have legal options to defend themselves from malpractice.

Which is just what ins companies, Drs, and hospitals fear like vampires fear the stake ...

Like all of you, I'm disgusted, depressed, but not surprized at this predictable turn.

 

[hapl808]

Single payer health is like communism: looks great on paper, not so much in Real Life .... it ust devolves into a tight-knit little group that strenuously defends its turf and has little to no oversight ....

I mostly agree that this is where I expect things to end up, but not sure the single payer system is at fault. You can get equally bad care in the UK and the US for CFS. We just have the privilege of also paying exorbitant sums to be tested and then told to try GET, or to pay even more to get at alternative specialist to tell us what we want to hear if we can afford an appointment. Not sure that's any better or much different.

 

[YippeeKi YOW !!]

You can get equally bad care in the UK and the US for CFS.

From everything I've read, both here and elsewhere, it's much worse in the UK, with absolutely no other options available without paying exorbitant additional costs to a 'private' physician.

Not sure that's any better or much different.

It's enormously different, and unlike the UK, there are other options, which is not saying that any of them are any better, but they're certainly not worse, however YMMV ...

 

[hapl808]

with absolutely no other options available without paying exorbitant additional costs to a 'private' physician.

But in the USA the ONLY doctors I've seen that will do anything other than just invasive testing are 'private' physicians who don't take insurance. I can barely afford the insurance because I make slightly too much to get free care - and if I bounced into free care none of my current docs would see me. The doctors that are covered either have long waiting lists (4 months for top ID or neuro, 3 months for rheum) or are useless. I've seen 'great' physicians as far as their background and schooling and affiliated institutions, but generally the most I've gotten offered is Cymbalta or told to take NSAIDs and push through. Neuro told me that, rheum, neuromuscular, GP, etc.

All the doctors I've considered or seen who specialize in these 'types' of illnesses are naturopaths, CFS specialists, hormone specialists, lyme, CIRS, etc. Not one of them has taken insurance. Usually initial appointments are around $500+ plus lab testing, although 'some' lab tests are covered. I've found it's about $2k before you get a sense of how they're going to treat you.

Not a system that has treated me well.

 

[livinglighter]

I think we need a multi-pronged approach. I would encourage all to call NICE as I did yesterday to let them know how I felt. Sign petitions, write to MP's by all means.
I think a protest outside the NICE offices in London and Manchester would be a great idea, even if its a small number of people. The media generally portray anyone protesting against the establishment on any issue in a negative light. I know I've been on hundreds of protests over the last 30 years on a wide range of issues. The issue is that such protests would generate publicity which NICE would be averse to.
I've written about and studied the history of the UK labour movement during my doctoral studies. Its very clear that all of the advances in democratic rights/living standards were not granted by benevolent rulers but had to be fought for by ordinary people coming together and taking action collectively. It is time for our community to say no more!

I had a flare-up yesterday so could not respond. I agree, even if it's a small number of people it will be fine. It would also be great if carers/patient supporters could attend. I feel somewhat better today so will provide an update about how I get on. I've been avoiding pushing myself too much, as my body feels terrible, but for this, I will!

It's not really the media that has me concerned - like you said anyone protesting is an angry mob! my reservations are more about feeding the BPS narrative, they are so slippery with their words and expert gaslighters. You've got to consider how you approach/word things more with people like that.

 

[andyguitar]

. It would also be great if carers/patient supporters could attend.

I'm up for it if its in London.

 

[livinglighter]

I'm up for it if its in London.

I’ll suggest both London and Manchester Offices.

I’ll report back in the week. I think 7 working days is a reasonable amount of time for NICE to provide a full update about what is going on given the circumstances.

 

[Pyrrhus]

Dan Wyke has been gauging interest on Twitter for an in-person protest:

https://twitter.com/i/web/status/1428266761321861123

 

[SNT Gatchaman]

I've just emailed the following to NICE. Reportedly, they are being swamped with emails.

Dear Madam/Sir,

I am a UK citizen, resident in New Zealand.

I write to request that NICE release the 2021 ME/CFS Guidelines as soon as possible. The late interference by certain Royal Colleges in your final-stage processes should be condemned.

The science confirms a biological cause. My personal experience over 8 months clearly indicates this to me also. There is no place for psychological treatment as a primary intervention.

Exercise therapy is unquestionably harmful for this disease and must not be advised. I have been able to avoid this, although necessary cardiology treadmill tests (even at the lightest setting) have made my symptoms worse.

As a doctor and now as a patient learning to manage this condition, I am disheartened to learn the history of this disease's mis-management.

Patients around the world look to NICE to lead the medical profession into a new era - guided by facts and guided by evidence.

Yours faithfully,
[REDACTED], MB ChB, RANZCR

 

[Rufous McKinney]

I've just emailed the following to NICE

Nicely done there!

clear concise and rational!

 

[Pyrrhus]

The London protest might actually happen:

https://twitter.com/i/web/status/1429398631208062977

 

[Bronc]

The London protest might actually happen:

https://twitter.com/i/web/status/1429398631208062977

There is a new group formed on twitter called The Chronic Collaboration @TheChronicColab which states they are:
"A new resistance movement for chronically ill & disabled people. Joining the dots between conditions. Resisting psychologisation. Fighting for justice & equity.''

It would appear they are taking the lead in organizing a protest outside NICE HQ in London.
I hope one is organized outside the Manchester office as well, London is just too far to travel by public transport.
Great initiative to see. Please share with anyone who might be interested.

 

[Bronc]

I’ll suggest both London and Manchester Offices.

I’ll report back in the week. I think 7 working days is a reasonable amount of time for NICE to provide a full update about what is going on given the circumstances.

Yes we need one outside both offices!