United Kingdom: News from Forward-ME Group

Hutan said:
I see that Forward-ME has a website and lists its member organisations.
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That must have gone live this weekend as it was still down a few days ago. It's definitely an improvement on the last effort but there's a lot of stuff missing and it still looks quite basic, like they've not got a budget to get a website professionally designed.

Robert 1973 said:
MERC was formerly the CMRC. I think there are at least a couple of people on here who have indicated that are or were on the PAG. Maybe @InitialConditions or @Andy? Sorry, I’m just guessing and I may be completely wrong but they may know more.
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Sorry, didn't get notified of this and have just caught up.

Yes, I was a member of PAG for around three years. During that time I gave occasional updates and discussed important issues here on the forum: https://www.s4me.info/threads/united-kingdom-me-research-collaborative-merc-was-cmrc-news.2809/

There is another prominent member here who I believe is still on the PAG, and, although I have no reason to believe they want to stay anonymous, I will not tag them for now.

I can't read all the above, but from what I gather there is discussion about whether PAG members should be named / not be anonymous.

First, there was never any decision for members to be/remain anonymous. I believe we left it up to individual members. Most members were not prominent in the community — many didn't really use social media — so knowing their names would make little difference.

I tried to raise PAG's online profile when I was a member but there was never any resources or money to, for example, build a website. AfME and MEA were never forthcoming with any of that stuff even though they jointly provided PAG's 'secretariat', and there was often outdated info about the CMRC/MERC and PAG on their websties.

On 'recruitment', this has been handled by PAG members since before I joined, and I assume nothing has changed. The charities have no say — they just provide the admin support (i.e., advertising) for recruitment.

Hutan said:
There is no information about who is a member of the group or who represents them on Forward-ME.
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Whilst I would like to see PAG have their own website, this is really an issue for FME. We need FME transparency. I remember there were issues with minutes not routinely being added to their website. The minutes of course list who attended each meeting, so if you wanted to know which PAG members were there you could simply look at the minutes. There are currently no recent or historical minutes or important documents on the new FME website.

There is another issue in that PAG was primarily there to support CMRC/MERC but after DecodeME there was not much activity in MERC and PAG's role expanded to FME and the Delivery Plan. Again, there's very little information online about MERC, and we no longer have the CMRC conference each year.

There's a lot of hard work that goes on behind the scenes. We should be greatful for patient advocates who volunteer to do this sort of work.
 
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Jonathan Edwards said:
A wide range. of people accept the value of the 'holistic multidisciplinary team approach' without realising that these words are designed to manipulate perceptions and diffuse accountability.
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What surprises me about it is that anyone with any experience, even at one stage removed, knows that the more people are involved in care, the worse the communication gets. It places a heavy burden on the patient to brief and re-brief them, which may take up much of their appointment slot.

The only examples I've come across where it works well is in very severe MS, where a nurse who knows the patient functions as the spider at the centre of the web. Some of them do an excellent job co-ordinating multiple services. [ETA: and have very sharp elbows!]
 
I would question the statement that 'we should be grateful to patients who volunteer...'. I am of course very grateful to those who do so in a well informed way. I am not grateful to those, if there are any in this context, who have an axe to grind, or who think they know better than others or who don't think they need to learn from others of all severities.

I am allergic to telling anyone what they should be grateful for. Gratitude is only real if it is felt from within. I am the opposite of grateful for what some pwME with too much influence are doing. I won't list names, you know who I mean.
 
Trish said:
I am of course very grateful to those who do so in a well informed way. I am not grateful to those, if there are any in this context, who have an axe to grind, or who think they know better than others or who don't think they need to learn from others of all severities.
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Of course — my comment was not meant as a sweeping generalizaiton. I am explicitly talking about this in the context of PAG and similar groups where everyone seems to be pulling in the same direction, because that was my experience as a member of PAG.
 
InitialConditions said:
Whilst I would like to see PAG have their own website, this is really an issue for FME. We need FME transparency. ...
Again, there's very little information online about MERC, and we no longer have the CMRC conference each year.
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I personally do not think it is too much to expect people representing the ME/CFS community to come and post here to update people, since this the obvious place to come for information, open to all. Charles used to post here but doesn't any more. I would like to see a thread like this having regular input from someone from the organisation.
 
Jonathan Edwards said:
I personally do not think it is too much to expect people representing the ME/CFS community to come and post here to update people, since this the obvious place to come for information, open to all. Charles used to post here but doesn't any more. I would like to see a thread like this having regular input from someone from the organisation.
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Agreed
 
Felis Catus said:
@bobbler You've raised some of my concerns which have been only increasing as my health has been deteriorating.

At one point on that downward trajectory, I have become painfully aware of the biases, beliefs and blame within the patient community.

This is an overly simple breakdown of some major observations that concern me based on my time in online communities and seeing what milder patients think and appreciate. Not all patients are like this. I think some problems you talk about stem from what I've written in the rest of this post but you've definitely touched upon wider problems than me here.

First, there's a common trap of attributting improvements to whatever they're doing (lifestyle, off-label prescriptions, supplements, mindset), overconfidence about their understanding of science, subscribing to simplistic pseudoscientific explanations and little ability to identify even the very obviously rubbish papers as crap.

Another one is just celebrating whatever becomes available to us in terms of services and healthcare options, seeing everything as a positive step forward. Furthermore, one might be called out for being negative and difficult at any hint of criticism.

Some patients who still have some quality of life speak highly of the OT who thought them how to colour code their activity diary, physio who's helping them strengthen their body, nurse who made them feel heard and validated when she told them their symptoms were real and not in their head but proceeded with treating them as if it was all in their head. Those patients highly value and call for multidisciplinary holistic care. In addition, some patients who weren't happy with the multidisciplinary holistic care they received are calling for better multidisciplinary holistic care based on the current model.

Finally, some patients show obvious disbelief that things can get really bad through no fault of the patient. The patient must be doing something wrong if they're getting worse or if they've deteriorated to severe/very severe. Some patients refuse to see the lack of care once you cannot leave your home. Common advice from a privileged position is to have private online appointments which also fails to recognise the limits of tele-healthcare.

I'd like to think that someone with any of the aforementioned views wouldn't engage in advocacy but I see it happening.
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Thank you.

I'm hoping I'm not erring into awkward territory but as an example that it happens in other ways I relatively recently saw an article from someone I knew from outside of being ill but knew they'd had CFS. Whilst the illness wasn't the focus there it was still woven in as part of the story and how they slowly recovered (albeit there wasn't too much about 'what they did' other than the lines about looking after themself etc and slowly building back) though the relevance was there to their original topic.

I wasn't close to that person but when I last got in touch (I know think it was around a similar time) I got a response telling me they didn't want to speak to me because they'd found their time when they had cfs traumatic so didn't want to go back there and be reminded of it by speaking to me - in a heartfelt doing best to be polite way of course. Both are fair enough, I guess (the being told we can't be honest and mustn't speak on our reality to not 'scare the newbies' or 'milder people' is another common one; as is people themselves telling us our lives traumatise them but we can speak about their issues).

And it is a large step more honest and brave than most who were or weren't ill who just wanted me to get the hint and disappear.

But there is something added if people reading are both assuming they speak for others and not influenced by mores that mean what someone in that context will describe or say they did can't be the full honest truth even if they wanted to. Something that doesn't I don't think happen as badly with other illnesses. Where eg someone might be a good news story from cancer a relative might point out but there isn't the same insinuation

And outsiders often think they are helping by dragging people in who mightn't even want to speak on it but have been told they are doing those who didn't recover (or are newly ill) a favour. It isn't necessarily really them. Even they are getting used as objects by the cheerful laypersons often.

And why would they, particularly if it wasn't too many years of their life, necessarily want to be reminded of it and be making friends with those less fortunate leading a different life etc . And yes I can even understand when they do eg go to a group but have their own problems and don't want to hear how it gets or asks people more ill to be hiding the reality even with what they can say of how their week has been.

But we have to remember when taking those with that experience into PPI or something similar that they only then know what they know, there isn't some magic expertise or knowledge or interacting. And even if they do eg by groups that doesn't mean unless the questions are asked in a frank way allowing people to give full answers that they aren't getting very edited versions because that's what has been demanded as etiquette sadly and so they actually don't have as much of a clue as they might think on topics beyond their experience until/unless they actively realise and seek said insight.

Such people on the other hand forming a group to give support to others who had it for x time and recovered so that they can discuss with each other what's that like for them is fine and worthy and not something I could guess at of course and it would be inappropriate for one of us still ill to be deciding to go and write that for them or answer surveys on any support for them regarding that need.

But it shouldn't be assumed as experience for things they haven't experienced directly without some serious checking. And I'd think most would/should find it awkward anyway?

And of course then there is that classic risk of projection/assumption where in trying to 'think of something helpful' if someone thinks they will find it traumatic to just hear someone matter of factly talking about their week because they find that level of disability whatever then I can very much see how a certain % of that group might go that loop of thinking 'help with the trauma' is what we need' not 'help with making life better' simply because they think they are helping at best, or yes making all sorts of other assumptions at worst. Particularly when you add in those who are still in the 'trying to sleep at the right times and behave well' phase and getting pats on the back and not deteriorating yet and so yes fallacial thinking helped by the clinics.
 
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Jonathan Edwards said:
I personally do not think it is too much to expect people representing the ME/CFS community to come and post here to update people, since this the obvious place to come for information, open to all. Charles used to post here but doesn't any more. I would like to see a thread like this having regular input from someone from the organisation.
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I not followed the MEA social media recently, but at least Charles had made himself pretty accessible to the patient community via Facebook at least relatively recently.
 
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