Silver Sufferers

Blogging for ME/CFS Awareness

Way back in 1955 there was an outbreak of M.E. at the Royal Free Hospital. It mainly affected nurses and doctors, they would have been young people back then. Now they will be pensioners, and I wonder how well they are doing now. Hopefully some will have made a recovery, but how many of them went on to become some of the 25% group who are housebound and/or bedbound?

Recent campaigns by M.E. Charities have concentrated their efforts on young people with M.E. This is a good thing, as it is a very difficult thing to live with M.E., and it is sad to see young people suffering, losing their teenage (or even younger) years to this horrible illness. It impacts on their education as well as their social life. So even those who recover have lost a part of their lives, and will have difficulty catching up on qualifications they need for the careers they wish to pursue.

But I begin to feel that older people with M.E. are being forgotten.

Even in "the prime of life" (whatever that is!) M.E. is a difficult illness to live with. It is hard to meet friends; let's face it, it's hard just to make a cuppa tea or coffee!

Last year I turned 60. I now receive my Old Age Pension. At least I will never have to fill in another IB50 form, sweat over it for weeks, and worry that I will lose my Incapacity Benefit.

In the previous few years I saw my parents becoming more and more frail, and eventually dying after some months in nursing homes. I was not able to help them in the last years they remained in their own home.

My Mother pleaded with me to go and stay with her after she had a fall, was in pain, and couldn't manage at home. I couldn't. The next day she was admitted to hospital, descended very quickly into dementia, and after a few weeks in a nursing home she died.

While my Father was in a nursing home I hardly managed to visit, as most of our energy went on trying to continue to help my Mother, and then visit her in hospital.

As an only child I felt stretched between them, unable to help either.

I am one of the lucky ones. My husband continues to care for me, to do nearly all the shopping and cooking (we gave up on the other housework other than the most basic cleaning!). Our daughters help when they can. And because of the help that I get from my family I am lucky enough to be able to enjoy the little energy I have, to take some photos, to do a bit of gardening, and currently to be staying at our caravan in Abersoch - John has left me with a large pan of delicious stew, and plenty of other easy to prepare food.

But what happens to those M.E. patients who live alone? After many years of struggling with the most basic of life's chores, as they age, how will they manage? I don't see that Social Services will be of much use - already I hear stories of how "carers" provided by them are refusing to do things that in the past they might have done, such as shopping and cooking.

We all are getting older, we read in the papers that the aging population is a time bomb, there won't be the money to look after us baby boomers. But how much worse is it for those who for years have had this damned disease? No job, so no comfortable pension, no circle of friends, no supportive partner or family for many. And as we age, those of us whose parents have looked after them may see their only support become too incapacitated themselves to help any more. So who will help them then?

Perhaps it's time for the M.E. Charities to begin to campaign for us old age pensioners with M.E.?



Sunset at Bwlchtocyn

Here we go again.

Another newspaper article praising Reverse Therapy.

'I used reverse gear to beat ME'

Hundreds of thousands of people have their lives blighted by ME, or Chronic Fatigue Syndrome.

Could the condition be reversed by changing our behaviour? Health Editor Barry Nelson meets a North-East convert.

This kind of thing makes me really cross. The article goes on to describe how a nurse recovered from ME/CFS by using initially Mickel Therapy, and then going on to Reverse Therapy.

It describes her as being diagnosed early in 2004 after becoming sick with ME/CFS following a life-threatening illness. She had by then been in a wheelchair for something over a year from what I can make out. So given that she is now, in 2007, completely cured, and has also had time to qualify as a Reverse Therapist, I imagine she was ill for around 3 years. People are more likey to make complete recoveries within 5 years of the precipitating illness.

Overall, there is wide variation in the duration of illness, with some people recovering in less than two years, while others remain ill after several decades. Those who have been affected for several years seem less likely to recover; full recovery after symptoms persist more than five years is rare. (Report of the CFS/ME Working Group to the Chief Medical Officer, page 17 of the PDF)

So basically I feel she was improving anyway, which is why Reverse Therapy "worked" for her. I'm glad she's got her life back, but I am very wary of these almost evangelical sounding "therapies" where when you don't recover it's your fault, you didn't do it right, you don't really want to get well.

As soon as she started having therapy and following the Reverse Therapy path, Lyn started to feel better. She had ten therapy sessions in total, some at home in Durham, some in Newcastle and some in Edinburgh.

Now a fully qualified Reverse Therapy practitioner, Lyn, now 48, is keen to help other ME sufferers in the region. "You need to have a diagnosis of ME which excludes other conditions and unless you are committed it is not likely to work, "

she warns.

But for her, following Reverse Therapy was "a joy" rather than a chore. "It actually makes you more real. I'm still excited about it ," she says.

Sessions cost £80 each.

No wonder she's so excited about it.

I've written about charges for these so-called therapies before.

You can download information on training as a Reverse Therapist. Here's what it costs:

Course Fees

The current UK fee is £1650. Licensing Fee – including 1-year Clinical Supervision (Optional): £950. Reverse Therapy UK is a registered training provider and Career Development Loans in settlement of fees are available to applicants who meet the criteria.

Dr Eaton PhD, who invented Reverse Therapy in 2002, has his own blog - here's what he has to say about Helping a client get well. However, I think that maybe Dr Eaton should be the recipient of one of these!

I should add that not quite all of the article is as loopy as the therapy claims. It has a very good description of what I call "lead legs" (or "it feels like gravity suddenly doubled") or as another blogger calls them velo-gubbed legs!

"About the third day into my illness I felt an incredible heaviness in my legs,"

says Lyn. "It felt like your batteries had run down. I was getting pains in the back of my calves and it felt like I had just run a marathon."

I can relate to that! ;-)

We went over for a meal with my parents last Sunday. It was very windy by the entrance to the flats.



Someone was having fun out there though! Sorry this is a bit blurry, but it just wasn't possible for me to hold the camara steady in the wind.

How to part patients from their money

After a heavy week watching my items not selling on eBay (well, three did in the end, two didn't), this morning I decided to while away a few hours reading the links posted by Dr Crippen in the first BritMeds of the year. As expected, an interesting mix. However, one item did lead me further:

"Advice from Lady Sonja, from the department of loony-tunes, that you should lobby your GP to get reflexology on the NHS "

Usually I scan down to see what else people have been blogging about, and here's what I found in a recent entry on Lady Sonja's blog - A Successful Cure For Chronic Fatigue And Fibromyalgia.

Now this plain makes me cross. Here's what Lady Sonja has to say in her final paragraph:

"In Mickel Therapy the therapist supports sufferers of CFS and fibromyalgia to take the steps necessary to stop their body sending them symptoms. By taking actions based on what their body is telling them, people can cure themselves of the debilitating symptoms and return to normal living."

Mickel Therapy is one of several similar "therapies" for ME/CFS, others are Reverse Therapy and the Lightning Process. The Mickel Therapy claims to have successfully treated over 400 clients, at a success rate of 92%.

Greg Crowhurst has written much better than I can about these "therapies" for the 25% Group, the national charity for those severely affected by ME, and their carers.

Initially Dr David Mickel (an ex-GP) trained with Dr John Eaton (Psychology PhD) as a therapist delivering Reverse Therapy. There is a very enlightening blog written by Adam Del-Monte giving some details of the Reverse Therapy treatment he received from Dr Mickel. After training in Reverse Therapy with Dr Eaton, Dr Mickel fell out with him, and left to found his own Mickel Therapy. Shades of the Freud and Jung schism?

I am shocked by the cost of these therapies.

What is the cost of Mickel Therapy treatment?

"This will depend on the area you are seeking treatment in but generally the fee is between £80 and £100 per session. This is paid at the end of each session." And according to Action for ME, treatment continues for 8 sessions for 75% of patients, longer for the rest.

I am shocked by the training undergone to be able to provide these therapies:

Mickel Therapy:

What kinds of qualifications does your staff hold?

Mickel Therapists only require one qualification and that is to have successfully completed the modular training and be in full supervision under Dr Mickel.
Because Mickel Therapy is innovative and unlike any treatment in existence that we aware of, previous experience of other treatments is unnecessary and can be a hindrance.

Not to mention the cost...

If you look at this document, you will find "Course Fee: Total of £1600 plus VAT" for an intensive 6 day course.

So for £1600 (plus VAT) you can be set loose on ME/CFS and Fibromyalgia patients and charge them up to £100 a session for a minimum of 8 weeks... Sounds considerably cheaper (for NHS) than using the NHS. I'm amazed Patricia Hewitt hasn't thought of it yet - gotta be less hassle than funding the current clinics.

How to train as a Mickel Therapist...

I am also struck by the Ferengi like thoughts here:

"Training should be viewed as an opportunity to provide valuable reduction in the suffering caused by the conditions that Mickel Therapy currently treats. It should also be viewed as an opportunity to expand into the self employed world of health provision. The terms and agreement details the fees involved in this. All potential therapists should have read this and accepted its terms before embarking on training in Mickel Therapy." (my emphasis)

Yes! Guess the Ferengi reference gives me away - I am outed as a Trekker. One of these days I will give you my thoughts on how the team on Startrek NG comply with (my inner Borg coming out there I think!) Belbin's ideas on Team Roles. Remember, Resistance is futile!


Update Tuesday 9 Jan 2007
The Daily Mail has run a story about the Lightning Process today.