UK: Priority Setting Partnership for ME/CFS

Yes that occurred to me too i.e. the NIH study had found comorbidities.

Perhaps diseases which can be mistaken for ME/CFS, i.e. from the NIH study, should form part of the exclusion process which leads to an ME/CFS diagnosis.

 

My point is, these patients were not properly diagnosed to start with; at least some of them had diagnosis that supersede ME, for instance cancer and MS. we are not privy of the detailed information, but we know that others had discovered co-morbidities during the research process, after being accepted as a subject. It is highly problematic and represents only the tip of the iceberg as of what is happening in the front line when people reach out to their doctors with a ‘fatiguing illness’ or failure to recover after a viral infection.

 

A problem is that sometimes people may have more than one condition.

A friend, with an under active thyroid condition, experienced years of distress and confusion and problematic thyroid drug management of her condition, before she suspected she had concurrent ME and then persuaded her consultant to take this possibility seriously.

In research it is important to look at the target condition in isolation, but in the clinic real life presentations may not be as tidy.

 

The JLA doesn't really do much re this. Early on they said that they had found over the years that translating surveys had not significantly improved responses. It is a question of who would fund this? JLA are a very small organisation of about 3 staff.

However some of the comms messages have recently been translated by a contact of one of the Steering Group members.

 

There were a large number of conditions asked about in the original questions, so the top 4 (numerically) were included in the question.
The questions do say such as EDS. POTS, MCAS and gut issues.

 

I chose only 1 from treatment and management, 7 from underlying mechanisms, and 1 from health services (about hospital, due to my personal experiences) and 1 from causes of symptoms/treatment (sensory).

My recent hospital experience really brought home to me, that part of the reason why people with ME are treated like this, is because nothing really shows up on tests, and there’s nothing that a doctor can see regarding the underlying mechanisms. Researchers say they know about mitochondria, but we do a muscle biopsy on PwME (the test most used to pick up mitochondrial disease) and the staining is normal. Researchers are looking at the muscle and nerves, we say it affects our muscles, but PwME do an EMG/nerve conduction, one of the main tests used in the first instance, and it comes out normal.

So we don’t really know enough about the underlying mechanisms at all - there may be abnormalities that researchers are working on, but it doesn’t translate into anything in the hospital or the doctors office. I realised how differently I was treated when the illness I had was clearly visible, and when other tests came back positive - when there were findings doctors could see and understand.

And I really do think, that until we get to a stage that we understand the underlying mechanisms enough that we then have tests that can be done in a hospital, and it demonstrates the pathology to consultants/doctors, we won’t get very far. We can try to get compassion out of doctors, and I know we are making steps and things are changing, but I still don’t think things will change hugely until then. Just like how MS was understood to be a serious illness only after MRIs were invented and the proof was in front of them.

So this is why I chose these (if I had been allowed to choose more, I would’ve added more of the underlying mechanism ones):

24. Which existing drugs used to treat other conditions might be useful for treating ME/CFS, such as low dose naltrexone, or drugs used to treat Postural Orthostatic Tachycardia Syndrome (POTS)?

30. What is the biological mechanism that causes post-exertional malaise (symptoms caused or made worse by physical, mental or emotional effort, which can be delayed) in people with ME/CFS? How is this best treated and managed?

31. What causes the central and peripheral nervous systems (brain, spinal cord and nerves in the body) to malfunction in people with ME/CFS? Could this understanding lead to new treatments?

32. How are mitochondria, responsible for the body’s energy production, affected in ME/CFS? Could this understanding lead to new treatments?

33. Does the immune system continue to over-function or under-function in some people with ME/CFS to cause symptoms? What does this mean for treatment and risks from infections and vaccinations, including COVID-19?

34. What happens to muscle function in people with ME/CFS?

37. How is the transport of nutrients/electrolytes in and out of cells affected in people with ME/CFS? Could this understanding lead to new treatments?

38. Does poor delivery or use of oxygen within the body cause ME/CFS symptoms? If so, how is this best treated?

42. How can the needs of people with ME/CFS best be met when accessing and using health and social care services (for example while in hospital)?

44. What causes sensory problems in people with ME/CFS (such as sensitivity to light, noise, smell and touch)? How are these best managed and treated?

 

Can someone give me the link to the survey please?

 

https://www.psp-me.co.uk/

 

Completely agree - the key questions all relate to identifying the underlying mechanism, everything else follows from that. Thanks for sharing your selected Qs, I have followed this list quite closely.

 

One aspect of the PSP which will be useful going forward is that all data will be made available for use by others.

There were many responses to the initial survey that were outwith the scope of the project - concerns re medical education , difficulties accessing benefits , issues accessing care etc.

These will be able to be used for advocacy or different research by charities / advocates/ researchers .

 

I assume these will be published in some way then?

 

I don't know what the process is - no doubt that is something which can be confirmed.

 

Thank you to everyone sharing their selection choices.

I particularly like @lunarainbows explanation regarding her choice of Underlying Mechanisms, that makes a lot of sense to me now.

My printed out Long List looks a bit dog’s eared as it has travelled up and down the stairs daily with my ‘work’ ever since @Andy told us where to find/print it out!

 

There have been over 1700 responses as of this morning.

The survey closes on 13th December

 

I'm a bit late to this thread, but I've got a real grump on about the PSP and the survey - sorry if I'm going over ground covered.

I've not yet completed the latest survey as it all seemed rather overwhelming for a patient with such limited energy - so many questions, too much to think about. And I'll have forgotten what I read 5 minutes ago, let alone coming back to it over the course of a number of days to deal with what is it, nearly 50 questions? Like many of us, I have the short term memory of a goldfish.

More broadly, the PSP was being set up in summer 2020 and yet, here we are at the end of 2021, only now at the point of responding to a second questionnaire, which is based on the answers of the first. I know using JLA means there is a process to follow, but, it feels so protracted and unncessary.

Yes, involving patients in determining the priorities for their illness is very noble, but, given the history of neglect that ME has suffered, I'd hazard a guess we would be better served by a few knowledgeable people (our charity representatives, perhaps, maybe under the umbrella of F-ME?) with an understanding of the needs of the patient community could have done this in about 10 minutes and we could have been a year and a half into looking at getting funding for some of the priorities. Maybe I'm missing something? Does a PSP and use of JLA give our needs/wants more gravitas?

Sorry, if this is all too negative - I just don't see what the PSP is actually going to give us. Who is listening? Who will listen when after maybe 2 years, we have come up with a shortlist of things we'd like to happen? (Is this the last survey? Will there be another survey based on the answers of this survey?) What then? Have we just wasted a load of energy on something that will get popped in a desk drawer somewhere.

It feels to me like we put all our eggs in one basket - in the UK at least - PSP will deliver 'something' and add to that Decode - great that we have a genetic study, but what else is being planned? Where's the urgency, agility, to dig further into this illness? Who's to say Decode will show anything in 4 years when it reports it's findings?

Instead, here we are surveying patients, asking them to use precious energy, to tell someone what they would like to happen.

I'll stop there, spare you my moaning further.

Hope you are having a good day

 

I'd like to share some of that optimism, I guess I just don't understand how the PSP would achieve this or anything, as opposed to our charities/groups of charities, that could/should be making far faster decisions on what the research priorities should be - especially building on the back of the NICE GL release and trying to get on with it, rather than a load more navel gazing.

Am genuinely trying to understand better what the PSP can/may achieve and how, it's just not clear to me.