Concerns about local ME group

[Earthlyknees]

This first time posting on this forum so hello to everyone and I hope you are all having as good a day as possible.

I live in a small town in England and last year joined a local ME support group which had just been set up, with accompanying Facebook group. I have had ME since age 11, am now 35 and have never been to a support group before, but having relocated a couple of years ago I lacked local friends and was mostly joining for that reason.

The first meet up I went to I met the founder and leader of the group, a woman in her late twenties who said she had had ME since childhood but said she had managed to make giant leaps in recovery through many things including aloe vera and exercise. She has been through hospital outpatient treatment for ME on the NHS, so had GET and CBT as well. She now goes on 10K runs, attends multiple gym classes each week, works full time, runs a business in her spare time, has an active social life but considers herself to still have ME. She told me she wanted to be an inspiration to others with ME, so they can make themselves better too. She said her turning point for making herself better was seeing other people with ME in wheelchairs and saying they had clearly given up.

I was pretty disappointed and offended by all this, the implication being I and others just hadn't tried hard enough to fix my health. I decided to go to one more meet up to see if I could make contact with other members of the group who I might better relate to, but the group leader (will call her K from now on) was there dominating the conversation, saying going on benefits was never an option for her as she had bills to pay etc, implying anyone with ME who did receive benefits were somehow letting themselves down. At this meet I was encouraged to join a gym and go on dog walks with K - this is all completely beyond me.

After this I decided to not go again, and felt concerned for those who were in the group, potentially about to push themselves into horrible relapses due to the influence of K. Also, a few days later I received a private message from her saying could she come and sell Aloe Vera products in my living room to my friends and family(!)

I stayed a member of this group on Facebook mostly to occasionally respond to posts about practical matters like questions about benefits or coping when severely ill as the leader ignores this kind of post. She likes or occasionally replies to posts which are about "positivity". She has recently opened the Facebook group out so anyone can join saying it is all about positivity.

This group is advertised in the ME Association and I am concerned that it could be very damaging to PWME who are perhaps recently diagnosed and more easily swayed into really pushing themselves physically. Those with more experience and knowledge of ME I hope would just ignore K and her advice.

Does anyone know if the ME Association have any requirements groups must meet before being advertised in their magazine? Or had a similar experience with a support group?

 

[Wildcat]

.
That sounds utterly toxic @Earthlyknees . Terrible. Highly damaging to people who do have ME.

Advising ME sufferers to push themselves is highly dangerous. And yes, newly diagnosed people would be particularly at risk of being taken in by her dangerous nonsense.

I expect it leaves other local ME sufferers isolated as they don't want to be part of such a group either.

And exploiting the group to flog Aloe Vera (probably multilevel marketing) is unethical and just beyond the pale. I don't suppose you can say what part of the country its in? Understand if you don't want to say.
.

 

[Invisible Woman]

Does anyone know if the ME Association have any requirements groups must meet before being advertised in their magazine?

If I remember correctly the MEA don't necessarily endorse everything advertised through their magazine.

However, given the founder's very poor understanding of the condition, the fact that she is taking it upon herself to provide advice/judgement rather than support and is clearly using the group as a means to sell products, I would get in touch with the MEA and let them know.

Very unfortunate that people like this hijack us. As @Wildcat says it leaves others isolated. I had a bad experience early on in my diagnosis and I've avoided local groups since, though I would love the contact and some mutual support.

 

[JohnCB]

I can imagine that you must feel terribly disappointed by this.

I have been involved with two or three local groups and they do vary quite a lot. They also depend upon someone having the motivation to lead each group and sometimes this motivation can come with different kinds of drive too. If the group is putting demands on you, then you are better off without it.

In my view the best thing a small local group can do is get people together and let them support each other. As you say you wanted to make friends and that is entirely reasonable.

A local group should not make entry requirements except perhaps to ask for a small subscription for running costs (but you should be able to go to at least one meeting without signing up) and perhaps fill in in membership form giving minimum necessary contact details and a statement that you support the aims of the group. The basis of a self help group is that you support one another through friendship.

There is no guarantee that anyone in a group actually has formally diagnosed ME according to any established criteria. A local group does not have the expertise to confirm a diagnosis and should not be trying to do that. A worthwhile group will accept members who "think" that they have ME or CFS or that maybe they do and want to talk to other people. It may also include relatives or friends of PwME. We had one older couple who attneded regularly as they had a daughter with ME, but she lived a long way away, and they attended as a way of understanding their daughter's position.

You will almost always have one or two members with outlandish views. That happens in voluntary groups of all kinds and ME is no different. Inevitably someone will latch onto you and explain their theories in detail. Normally you make a polite withdrawal. It is difficult if the group leader is the one with the wacky ideas.

Perhaps your best bet is to get to know one or two of the others and then you can meet up informally for coffee or whatever outside the group. The group has no ownership of personal friendship. You won't be the only one offended by a controlling group leader. Groups come and go, ME groups are especially prone to that because of the health problems. If you create a couple of friendships then you might find that this new group of friends becomes the core of a new more relaxed group.

Anyway I hope you enjoy your time with us on Phoenix Rising. You find lots of new friends and maybe a few you disagree with, but there is often a lively conversation.

 

[Snowdrop]

Hi @Earthlyknees and welcome to PR

It's rather unfortunate that this group is not set up as a support but rather to shame very sick people. Having ME can indeed be very isolating. And using the situation to sell products to people vulnerable and looking for help is so unethical (as wildcat pointed out probably multi-level marketing).

There may even be people here on PR who are in your area with whom you can correspond. And of course PR is a large online community and has lots of info about the latest happenings in ME research.

 

[trishrhymes]

Hello, good to 'meet' another new member. I hope you're not feeling too bad today.

So sorry to hear you've had such a horrible experience with this person. She clearly is not the right person to be running an ME group. I'd say definitely tell the MEA about it - they must surely take the group off their list, it's positively dangerous to have someone giving such bad advice and completely inappropriate for her to be using it to sell stuff.

I hope you can find other ways of meeting local people, though I know that can be pretty impossible with ME.

I tried going to my local ME group a few times, but found the problem was that ME was the only thing I had in common with the others there. And the person running it spent all the time talking about herself and made no effort to help new people feel welcome - and she was actually an employee of the local group, not an ME sufferer. Others seemed to be regulars, so they must have been getting something out of it.

I find for ME related discussion and support, Phoenix Rising is much better. You can come and go as you please and just join in the discussions if you want to. Wish I'd discovered it ages ago. I guess you could put up a message in here to ask if there is anyone local to you interested in getting in touch.

 

[charles shepherd]

The MEA has a very comprehensive website directory of all the local ME/CFS groups here in the UK:

http://www.meassociation.org.uk/information-and-support-line/find-a-local-support-group/

This is for information purposes - we are not advertising, promoting or endorsing every single local group in this directory

We are constantly updating factual information regarding contact details and lisiting meetings in our Diary of forthcoming events on The MEA website

These are all independent local groups and The MEA just does not have the capacity to monitor what they are doing or recommending (and this covers a wide range of views from those who run these groups on both cause and management of ME/CFS)

Neither do we have the capacity to get involved with internal disputes over policy which, sadly, happen quite frequently

Some have close links to The MEA and others do not - so all we can do is to take note of any information or concerns that people have about a local group

If there do appear to be serious problems about policy, or potentially dangerous advice being given, or the group is basically being used as a for a commercial sales operation (which does happen) then we will investigate

If necessary, we will remove a local group from The MEA website directory if concerns appear to be justified

That's as far as I can go without knowing more about the circumstances or where this particular group is located

Dr Charles Shepherd
Hon Medical Adviser, MEA

PS You could also raise this on the MEA Facebook page:
https://www.facebook.com/ME-Association-171411469583186/

 

[alex3619]

A worthwhile group will accept members who "think" that they have ME or CFS or that maybe they do and want to talk to other people. It may also include relatives or friends of PwME.

Exactly. Even related conditions are welcome in the group I am in. Its about support, and people sick with a lot of different things have understanding and experience to offer.

 

[alex3619]

You will almost always have one or two members with outlandish views.

I have been approached by people with extreme views more than once over the decades.

 

[JohnCB]

I have been approached by people with extreme views more than once over the decades.

I was once approached at an ME group meeting by a chap with not so much an extreme view but an extreme odour. He did actually have one extreme view, which was that the the smell of his garlic therapy had in fact dissipated over time and was no longer present. He proceeded to sit at the same table on the chair next to me.

Since then I have been cautious about which supplementation I try.

 

[Earthlyknees]

Gosh thank you for so many supportive replies already! I wasn't expecting that . It was a relief to read your reactions to how this group is being run, as I wasn't sure if I was just having overly high expectations! And thank you Dr Shephard for taking time out of your Sunday to reply as well.

Just to add a few details for extra clarity about what is going in with this group, and to give an overall picture rather than just point out the negatives. I feel I should point the founder/leader did seem kind of popular with a clutch of members, the second meet I went to there were at least a couple there who seemed a bit in awe of her. She is living the kind of life many people without any health problems don't manage to lead, an extremely full and active life, so I do understand that is in isolation admirable. She does include to the group relatives and friends of those with ME.

I should note that I have not had any sense of a falling out with her, I have had only polite exchanges. She sent me a private message on Facebook in July this year asking if I was planning on going to any more group meets and I said no and gave my reasons; that I didn't think advocating exercise was a good idea for PWME, that I was looking for a group where members just met up and had a chat rather to be given advice in a formal setting -the main group sessions are once a month with a practitioner from an alternative therapy promoting their therapy or treatment, she has also got someone in from the NHS. (The two meet ups I went to were actually social only but I am aware from Facebook what happens in the main group sessions.) I also told her in my reply that I didn't appreciate her views about claiming benefits. She replied saying she said she was sorry I felt this way and said that although she does advocate exercise to the group she is aware it doesn't always work for others.

I went to two group meet ups last summer, 2015, so I cannot say that right now if she is still behaving in the same way by messaging people she has met through the group to sell her aloe vera products (she is a Forever Living seller). She never mentions Forever Living publicly on the group page but did at the two meets I went to. I do know that she is now trying to sell T-shirts on the Facebook group, and has not mentioned if there are any profits or where they are going if there are. The T-shirts are branded with the group name and logo. I hope she will be putting any profits into the group, which now has regular meetings run by the same person in a nearby city as well.

I wouldn't mind someone running a support group with her level of fitness, as long as they were not claiming to still have ME, and that they didn't push methods that helped them to improve on others - to be more responsible about giving advice when not a medical professional. I suspect that there will be a minority of people misdiagnosed with ME who perhaps have a different condition, like depression, which can be helped by exercise, or possibly variants of ME exist which respond differently to exercise and mind over matter type approaches, it is just that she doesn't seem to realise she could be in the minority and that her recommendations are actually dangerous to others.

It is great to link up with other PWME on this forum, I am glad I joined

 

[charles shepherd]

Perhaps you could let me know (via: admin@meassociation.org.uk) which local group you are referring to

And I would be happy to speak to you on the phone at some convenient point during the coming week - because it is clearly not appropriate for someone to be running a local group and at the same time using this position to promote/sell a commercial product

I'm afraid that aloe vera does has cropped up before in this context………

Dr Charles Shepherd
Hon Medical Adviser, MEA

 

[aaron_c]

He did actually have one extreme view, which was that the the smell of his garlic therapy had in fact dissipated over time and was no longer present.

I had a slow onset, so early in my ME/CFS during something of a "recovery" period I tried doing a parasite cleanse involving raw garlic. This was while working one cold winter finishing the inside of a house. We didn't open the windows much because all that escaping heat was lost money. My poor coworkers! I think it was a day or two before the boss came around and pointed out that the house smelled something awful from my garlic farts--we hadn't realized why until then.

When I think of some of the things I've done, I just have to laugh.

I hope you informed that chap just how wrong he was. I hate to think of him going through his life blithely unaware of how the garlic made him smell.

 

[purrsian]

Nothing annoys me more than people suggesting we just aren't trying hard enough to get better. I try to help myself every single damn day! These people don't realise that just existing can be hard for us. Sometimes I'm so fatigued that lifting my finger to click a button on the keyboard or click the mouse button is so hard - but obviously, if I just jumped up and went for a jog, I'd be all good (ignoring the fact that I'd probably collapse from pure muscle fatigue!)

It sounds as though this woman may have had CFS/ME or a similar condition, but was lucky to be one of the ones where is resolves within a few years. It seems like some people have it for just a few years and then get better, while some of us will literally never be the same (even though we can improve, we will always have to be careful and lead a certain lifestyle to remain less symptomatic, like a diabetic). It's dangerous when these people suggest that we should just do as they did, assuming we all have exactly the same condition, and she shouldn't be making treatment suggestions when she isn't a health practitioner of any kind. I honestly don't understand how you can think you still have ME but do as much as she does...full time job, business on the side, 10k runs, multiple gym workouts per week, active social life...that's a lot of a healthy person! If she's "still fatigued", it's because she's doing so much! I honestly don't believe I will ever be able to do that much again and I think being told that I could have that, if only I'd just work a little bit harder and be a bit more positive, would have been very damaging to me earlier in my illness when I didn't understand it well.

And the comment about people in wheelchairs giving up being what spurred her on to help others...that's such a horrible judgement! I've used a chair a few times to get through big events and it wasn't that I 'gave up', it's that I still wanted to do things that I couldn't physically do otherwise. I think that people who use wheelchairs to still participate in a somewhat normal life are just accepting their physical limitations and working with them to life the fullest life possible. Acceptance is not giving up - it's understanding your situation and working with it instead of fighting against it.

It may also include relatives or friends of PwME. We had one older couple who attneded regularly as they had a daughter with ME, but she lived a long way away, and they attended as a way of understanding their daughter's position.

This is so lovely! Such thoughtful parents who obviously care so much.

I find for ME related discussion and support, Phoenix Rising is much better. You can come and go as you please and just join in the discussions if you want to. Wish I'd discovered it ages ago. I guess you could put up a message in here to ask if there is anyone local to you interested in getting in touch.

I think these forums are amazing, as we all obviously struggle to make it to things like meetings but here, we can come in and out as our energy dictates. I've never even tried to go to an actual support meeting, because I always get such good advice, perspective and knowledge from all the people on here.

 

[digital dog]

That lady does not have ME.
I doubt she's even had it as anyone who has gone through this would not be advocating what she is.

 

[*GG*]

That lady does not have ME.
I doubt she's even had it as anyone who has gone through this would not be advocating what she is.

Seems like she had CF, not CFS!

 

[Earthlyknees]

I hope you can find other ways of meeting local people, though I know that can be pretty impossible with ME.

Thank you, yes it has been hard. I moved here almost three years ago now and have really struggled to meet new people as I am not well enough to work. I think without a job where you get to know colleagues, or children putting you in contact with other parents, it's really tough to meet people. I go to a meditation class once a week (or did before it got too cold - it's held in a drafty, unheated hall!) but that's really the only chance I have to meet new people. And these are people who wish to zone out for a bit, not chat! I should point out I am married, my husband does a remarkably good job of understanding ME despite not having it himself, and my stepchildren come round quite a bit so I am very lucky in that way. A few years ago, pre marriage, living on my own, not working and a lot of the time not feeling up to visiting friends (or having them come round) was much more isolating.

And the comment about people in wheelchairs giving up being what spurred her on to help others...that's such a horrible judgement! I've used a chair a few times to get through big events and it wasn't that I 'gave up', it's that I still wanted to do things that I couldn't physically do otherwise. I think that people who use wheelchairs to still participate in a somewhat normal life are just accepting their physical limitations and working with them to life the fullest life possible. Acceptance is not giving up - it's understanding your situation and working with it instead of fighting against it.

I agree with you completely, I found what she said about PWME in wheelchairs so offensive. I think acceptance is the most positive thing we can do for ourselves when living with ME, in so many ways. Society tells us we should be doing this or that with our lives, and as I get older I feel others (non MErs) probably feel sorry for me in terms of what I am expected to have achieved by now, but in myself I know I have done as much as I possibly can, and if I have managed to empty and reload the dishwasher whilst feeling really ropey and that is all for that day I know that is still an achievement, it's just impossible for people without ME to understand that, or at least ones who are not interested in understanding what the illness really is. Plus, with acceptance comes stability, or can do - if we aren't constantly pushing and pushing against what feels physically possible there will be less flare ups of symptoms.

 

[Earthlyknees]

Hello Everyone, I hope you all managed some nice times over Christmas and aren't paying too much for it now.

I just thought I would give a little update on the situation with regards this support group. I was on the verge of leaving the Facebook group for it due to everything mentioned already in this thread, but spotted a daytime coffee meet up was being organised for a venue just a few doors down from my house, and that the organiser wouldn't be attending as she works full time, thought I might go along to that at some point and therefore needed to stay in the group to see alerts about it.

Yesterday however, the organiser (who I referred to in my original post a few weeks ago) posted something which I thought was a bit inappropriate/insensitive for an ME support group, and so I left a short, polite comment explaining why I thought this. A few hours later I checked back to see if any further comments had been left and couldn't find my post, then realised I couldn't access the group, that I have basically been removed - it is a closed group you have to request to join. I went to the organiser's personal Facebook page to see if I could message her about this privately, and it would appear she has blocked me from that too. (She added me as a friend on Facebook a long time ago, before I knew much about her.) I then sent a private message to the seperate, public, Facebook page for the group which I know she also runs, saying I would greatly appreciate finding out why I have been removed from the closed Facebook group and am yet to hear back, I doubt I ever will.

I can only assume she has removed and blocked me because I politely disagreed with her about something, and this to me is pretty incredible. My comment was calm and respectful in tone, there was no swearing, personal attacks, capital letter shouting, or anything else which might warrant banning someone from a group. I only infrequently posted on there so it won't have been due to being a posting pest either. I now wonder whether this has happened to other group users, anyone who writes anything not deemed 100% 'positive' has their comment and themselves removed!

Anyway, I hope to use the forums here more in the New Year, it seems like a really supportive and informative community, who needs local support groups eh!

Wishing everyone here a peaceful and healthier 2017

 

[purrsian]

Wow she sounds like such a child. Is the group owned by her or does she just look after your area? If it's part of a larger organisation, you could always complain to someone higher. Otherwise, you just have to hope that people encountering her are smart enough to figure out she has no idea what she's on about and that they don't hurt themselves in following her wonderful advice. It's sad to see, as sick people are so easy to take advantage of and can cling to any kind of hope.

Wishing you a happy new year too

 

[Earthlyknees]

Thank you @purrsian . I hope you are having a good first day of 2017 and thanks for your reply.

It's all her unfortunately, she started in 2015 by launching a meet up group in my home town, with accompanying Facebook page and closed group, then a few months ago set up another in a different town where she works. She's also recently set up a Carers Group which is perhaps the most worrying component as it might be easier for healthy carers/parents of the newly diagnosed to buy into her think and exercise yourself well approach.

Yesterday I didn't go into details about the post I commented on, as I didn't want to make my post here too long, but it was a about creating a jar of goals for the coming year - pieces of paper on which you have written goals, with the added part of reviewing at the end of the year which ones you had completed. Perfectly fine for healthy people, perhaps suitable for people with mild ME, but she did not add anything to show she recognised for many it is impossible to set goals due to having ME. She also ended this post saying a goal could just be travel within the UK (just!) and your goals can be anything you want. For those unable to get out of bed as their ME is so severe I thought it was an especially unhelpful thing to read in what is meant to be a supportive place to visit. And so I worded a short, measured response saying something along the lines that with PEM pushing yourself to achieve goals isn't such a good idea, and that I didn't think this motivational approach was appropriate for PWME, it isn't motivation that we lack.

I didn't say this, perhaps I should have - but as someone with moderate ME I think the best thing I could do for myself this year is to let go of goals, there's a ton of stuff I'd love to do in a universe where I don't have ME, and reviewing at the end of the year what I didn't manage to do but wanted to would be pretty soul destroying. For me, just getting a bit of sewing done when I feel up to it, or cooking a meal for my husband very occasionally, is all I can manage right now, I would love to go travelling round the UK doing things like meeting my cousin's baby and visiting friends, maybe this will be possible at some point and I will certainly seize the day if it does seem possible, but setting it as a definite goal would simply make me sad at the end of the year if it turns out I didn't manage it.