Online support groups

[klr31]

Hi,

Does anyone know of any good online support groups please?

Karen

[strongmouse]

I know that there are some local support groups. Both Action for ME and ME Association keep list of linked local groups, so you could ask them for details. They tend to be in person groups. There are a couple of Facebook groups, but I don't know what the general ones are like. It does help to have other people who know what you are on about! There are others such as Health Rising Forum. It tends to talk about medical conditions and current research. Many of the examples are ones available in the US but not available in the UK.

Hope you find something helpful.

[klr31 in reply to strongmouse]

Thanks. I'm not finding my local support group much help which is why I wondered if there were any online.

Karen

[strongmouse in reply to klr31]

They do vary at a local level!

It depends what sort of support you are looking for. Invest in ME provides support for people struggling to get help with ME especially if you go into hospital.

I've had ME for a number of years so not up to date with the online groups. Have you looked on Facebook? I do belong to one for Christians with ME.

There is a list of groups on Dr. Myhill's web page. If you haven't come across her before she is a GP and has specialised in providing help and information for people with ME / CFS for many years.

drmyhill.co.uk/wiki/CFS/ME_...

[klr31 in reply to strongmouse]

Thank you. Yes, I've seen Dr Myhill many years ago, I've been ill with M.E for many years. I have joined a few Facebook groups. We used to run a group but now someone else does (face to face) but I'm finding that I can't relate to anyone who goes now. Thanks for replying to me.Karen

[strongmouse in reply to klr31]

Yes, I understand that. Finding 'your people' can take time and groups do change over time. Sometimes I've found support from unexpected areas, depending on what I need.

I looked at your profile and can see your husband has ME. It can be hard when both partners have ongoing health issues. In recent years my husband has developed several, including Rheumatoid Arthritis, and we are finding our way through supporting each other in different ways.

[klr31 in reply to strongmouse]

We both have M.E as it's how we met 27 years ago, even though we lived 200 miles apart and I was in the early days of M.E. Hashimoto's was diagnosed later, although I feel it may have contributed to me getting M.E. Mike gets regular migraines too. I have had some stability and improvement now I'm optimally medicated on thyroxine but we are both very limited. The people in the group are a mixed bunch but don't have M.E, it seems to me. The lady who runs it doesn't either as she facilitates it for the nearby central M.E charity. Most go with mental health problems. Doctors seem to misdiagnose M.E a lot of the time, it seems.

It is difficult and very lonely living with health problems. We have no family either due to the illness.

Thank you for your reply. How have you found a way through?

Karen

[strongmouse in reply to klr31]

"How have I found a way through?" Good question!

Learning to take each day as it comes. Learning about pacing has helped me a lot. i.e. the energy window whereby I don't make my health worse but using up to much at once - avoiding the boom and bust. It is so easy to want to do a lot more when you are feeling better and then suffer worsening symptoms afterwards (crashing). Be kind to yourself and to those around you. Some days my husband is in a lot of pain and I try to be supportive and listen to him, then other days it is the other way round, and sometimes we are both finding it hard.

Having had relapsing and remitting ME for years I became much worse about 15 years ago. I found that hard, and did see a psychologist who was brilliant in understanding that. She helped to to accept this new, lower level of day to day ability. I have learnt to live life differently. It was hard for me applying for PIP for the first time in my life.

Yes, finding medication with additional symptoms is important - I have allergies, asthma, osteoporosis, oesophagitis, occasional migraines, spine pain and sleep reversal - and they need medical diagnosis and care. I find it helpful not to just focus on ME and to have other interests, but I know that some people are not well enough to.

[klr31]

Yes, I do that and am OK at not letting my illness define me. But oh it's difficult at times not to long to be the person you'd have liked to have been, and just accept who you are. I think finding others who are similarly constrained, and hence understand, is helpful so thank you.

Karen