What advocacy use should be made of DecodeME results?

[V.R.T.]

This

I agree with all of this, but if funding from government bodies is incomplete or not forthcoming then I think a patient funded or partly patient funded SequenceME is better than it not happening at all. But because we don't know the funding situation and it may not have been determined yet, we cant make any decisions.

Yes, that's a good question, but the sequencing project may be the most efficient way to fill in some of the gaps.

It's possible someone will work out a druggable target from the results we already have, but it's very unlikely to be the full answer or the answer for everyone.

To be clear, I meant necessary in terms of raising funds now before we know how much govt funding SequenceME has recieved. If we raise loads of money before we know if its needed or if the MRC/NIHR will pay the tab things could get confusing and people who've donated may be angry.

And yeah whilst I hope there is progress before SequenceME completes, we want the whole answer not a partial one.

 

[alktipping]

Is there a precedent for an illness having been overrun by 'it's all in your mind' proponents and then moving properly into the medical sphere? Wondering if that would show us an example of the route out, but maybe we're unique (lucky us).

Ulcers.

 

[Jesse]

From AFME:

The next phase, involving sequencing of 10,000 participants, requires £7 million in funding.

Which would be quite a lot to raise through crowdfunding.

I think our biggest hope would be government funding. The DecodeME results obviously are supportive of this. But I have no idea how that works in the UK. Else it would be nice if AFME, OMF etc. would launch a huge crowdfunding campaign.

 

[Kitty]

Ulcers.

My mam suffered from gastric ulcers for 25 years, but the GP wouldn't refer her to the hospital. She had vomiting attacks every day and had to eat a very restricted diet, but it was psychosomatic and therefore not worth investigating.

She went to the GP over something else and was seen by a different doctor. He asked about her history of gastric problems, and immediately referred her for urgent tests. They found that most of her stomach was ulcerated, and said it was incredibly lucky she'd never had a bleed. They had to remove 85% of her stomach.

That was a few years before it was established that antibiotics could treat h. pylori. When it came through, her then GP then presented it as good news. Which it was, of course, stomach ulcers were a common and very miserable problem.

 

[Michelle]

But the reality is, as you obviously know far too well, that people are suffering and dying, and they need help now.

This is absolutely true. Which is why I agree with @Jonathan Edwards 110% upthread. A letter from the Grand Poo Bah of Medicine (if such a thing existed) is not going to get patients domiciliary care. It is not going to get them parenteral feeding. It is not going to get them home care service. It is not going to get them disability benefits. It is not going to get them A&Es/ERs that aren't torture chambers. Even if tomorrow someone were to have a breakthrough in ME/CFS akin to Jo's with regard to Rituxan, there are still going to be patients who are not going to respond to treatment and are STILL going to need these things. But such a breakthrough is not going to happen tomorrow because science is slow. God knows I've spent two decades in a bedroom wishing it wasn't, but it is. And I have found it tremendously disheartening that the ME/CFS community has spent decades fixating on The Great Scientific Breakthrough that is going to give everyone their life back rather than setting about the work of dealing with the material/clinical needs that we have right now.

First, can we stop acting so defensive about whether ME/CFS is psychosomatic or not? There is no objective evidence to support that behavioral therapies work in this condition---including (especially?!) in research done by the very researchers who believe (but can't prove!) that it does. The more we keep waving around the latest scientific study (and DecodeME is sublime even if it's not the most intuitive to grasp) and insisting it's finally proof that it's not all in our head, the more we're in a "methinks the lady doth protesteth too much" situation. I can't count the number of times I've seen media reports where a well-meaning patient advocate or HCP is talking about ME/CFS and then says something along the lines of "so that shows this isn't 'all in the head.'" Well, if whoever was reading/watching that didn't think about it being all in the head before, they are now!

Patients simply need clinical care, regardless of whether the reasons are psychological or biological (even though we all know all of it is biology). They have no evidence that withholding parenteral feeding is beneficial. We have, what, sixteen dead patients in the last decade demonstrating that withholding parenteral feeding kills? They have no evidence that de-sensitization therapy works. We have thousands of patients who say it makes them worse. They may have loads of studies suggesting psychotherapy works but not a shred of it is based on objective data. What's the number needed to treat to achieve what outcome? Your GP will give a deer in the headlights look should you ever ask because no such data exists!

We are also not the only patient group dealing with many of these issues. Many conditions leave patients homebound. Many conditions leave patients needing home care. Many conditions cause varying degrees of issues with sensory stimuli. This is where collaborating with other patient organizations to get that care could be very useful. Not only do larger numbers have more power, but working with other patient groups means we would have allies so we don't look like just a niche group of whiners.

For the first decade or so, I so wanted vindication. I wanted to see Simon Wessley marched down the Mall "shame, shame, shame" style. I wanted every specialist who blew me off to tearfully apologize. Even more so, I wanted to be me again. I wanted my life back. I wanted a treatment that would get me out of this fucking bedroom. Yet eventually I realized that there are any number of things that could have landed me in this bedroom with even less hope of leaving. But if I was stuck in this bedroom while I waited for science to come to my rescue (and even more so if it couldn't), I needed health care at home. I needed an income to live on. I needed a caregiver. Hell, I needed a home! As a community we owe it to each other to spend at least as much effort pursuing these things as begging the great and the good in medicine to please, Sir, can I have some more recognition?

(It should go without saying but I'll say it anyway: we also need more good science! Clinical care and scientific research are not mutally exclusive and often feed on each other---yet another good point Jo made in another thread about university clinics!)

 

[Peter T]

Well said @Michelle

 

[Ariel]

From AFME:

Which would be quite a lot to raise through crowdfunding.

I think our biggest hope would be government funding. The DecodeME results obviously are supportive of this. But I have no idea how that works in the UK. Else it would be nice if AFME, OMF etc. would launch a huge crowdfunding campaign.

I agree it's a lot of money. But individuals often raise hundreds of thousands on GoFundMe. A series of coordinated campaigns may raise this amount within a relevant timeframe with all the patients that are ill and their relatives/etc.

 

[Michelle]

Well said @Michelle

Thanks. I was worried after I posted it that it might have come across as too much of a screed or that it might seem like I was having a go at individuals in the thread---which I was not. I suppose this was a rant that has been a quarter of a century in the making. It's been especially hard watching so much money going toward "science" such as the $1.5 billion that went for Long Covid but appears to have been mostly just jobs for mates. There are pwME/CFS and Long Covid living in their cars right now. People who desperately need home care. Or primary care at home. We need healthcare providers who understand just basic management of this condition. And we need hospitals and clinics that are less sensory intensive for everyone, including pwME/CFS. And yet in the 25 years that I have been a patient, I've seen no focus on fundraising for that. No non-profits focused on this (maybe ME Action every once in awhile ? And there AMMES's financial crisis fund). No political pressure to get those things. It's all focused on scientific research. And we do need research. But we also desperately need basic clinical and material care of patients too.