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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Practical, local help and support.


Senior Member
Imagine if someone had already set this up in your county:

1. One local (private) online group/forum where all CFS/ME sufferers in your county (regardless of which CFS charity they belonged to) could share local knowledge, contacts, information and experiences (using a different username).

2. You could all decide on the priority practical services you needed in your county such as benefit advice from someone qualified you can trust who could also visit us at home, or free/subsidised handy person, lifts/transport, meet one to one with someone likeminded for a coffee etc.

3. A non CFS person was employed to carry out any duties decided by the group. This would enable the group to take more of a collaborative advisory role and require very little energy from each individual. (initially funded by our CFS/ME charities)

So many CFS/ME charities and forums are working so hard and making great progress campaigning, supporting medical research, changing policies, educating, raising public awareness, websites, sharing information, newsletters, support lines and much more.

While this excellent work is vital, unfortunately many of us are drowning and cannot access the practical local help and support we need to exist let alone live.

Having so many different charities operating independently nationally or internationally has so many advantages but can also be a disadvantage when trying to coordinate local practical support.

I feel it would be useful if each county had one central contact point who only specialized in coordinating practical local support for that county regardless of which charity people belonged to.

So many of us dont have enough energy for basic day to day existence, yet so many generously spend their extremely limited energy campaigning and supporting others by organizing group meetings and newsletters, support lines etc.

Many of these people work so hard to set up and run these services at the expense of their own health.

I feel some roles can only be filled by someone who has actually experienced CFS but we simply dont have enough energy to do everything ourselves.

I feel it would be beneficial if we took more of an advisory role and employed a non CFS/ME person to coordinate and run the service.

We could decide what that service would include and use feedback to decide on direction and improvements.

So many of us are lonely and isolated but so many people find physical support group situations too stressful and exhausting and would prefer one to one conversation.

Organizing and coordinating a county full of one to one meetings would be too exhausting for anyone with or without CFS/ME.

But if we used Bobs brilliant Yahoo idea and employed someone competent with an appropriate personality type we could find so many new ways to meet and find the practical local support we need.

We could use Bobs idea to choose to meet people according to their personality and interests and expectations.

Group meeting are generally too widely spread and people tend to choose a particular group based on whats nearest.

But we all have such different needs and expectations of support. Some prefer to campaign while others would prefer to have a light chat.

So many of us are so lonely but find talking and listening too exhausting. I feel we need to focus on the quality of our support.

Having a coffee with one likeminded person we have developed a rapport with on Bobs yahoo idea may be far less exhausting and far more rewarding than several group meetings.

I know the government and medical profession should be providing us with the practical help support we need but the reality is they are not, and many of us are not able to cope or manage until we succeed in changing their unjust policies. I feel we need practical emergency solutions to help us urgently.

We could chose to only collaborate online. We could also choose to meet one to one or in interest groups or anything we like. We decide.

We would all have local knowledge and contacts. Anyone housebound could chose someone more mobile or we could encourage local businesses, charities or locals to help out with lifts. We could design a logo to advertise businesses or charities or people that support us.

We could also work with other charities such as changing faces. Many disabled people face discrimination in the work place. We could unite to support each other.

For example there was a solicitor who despite her qualifications had great difficulty finding employment because she was a burns survivor. There are so many people able to work / drive but who are discriminated against and cant find employment. We could all help each other.

There are so many possibilities.
We are best placed to understand specifically what our needs and difficulties are.

No one can be better motivated than us to find solutions to those difficulties.

At present we are being fobbed off and are not receiving the help support and investment we need.

It is so much cheaper for the medical profession to continue to fob us off.

Upton Sinclair said:

"It is difficult to get a man to understand something, when his salary depends upon his not understanding it!"

It is not in their interest to change.

We want change, they do not.

They have and will continue to resist our attempts for change.

They are using our disability of lack of energy against us.

Thats why we need to employ non CFS/ME staff and take a more collective advisory role.

I was hoping ground level local support would start as emergency practical help to improve our standard of living.

If we had better debt and benefit advice we would have better results.

I was hoping this would then grow to improve services locally. We could collaborate locally to make the changes we need.

I started a thread Solutions to loneliness and isolation
in Lifestyle Management but it died.

I would really appreciate it if you could take a look at the other thread and give me some feedback here on this thread.

I was hoping if I had some support I could start a shorter more summarized new thread there.

So many of us need local practical help. If we collaborated locally we could make more impact locally.

Please help. This is possible.

Especially if you have seen the film Us Now (free online).