ME/CFS

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My daughter was diagnosed with M.E when she was 15. She's 40 now so we've been living with it for 25 years! More is known about this horrible illness now than back then but still not enough.

It affects sufferers in many different ways so the best advice I can give is for your granddaughter to start keeping a detailed diary. She needs to learn as much as she can about how things affect her. She needs to record as much as she can about how activity, sleep, food, meds etc affect her in order to look for patterns.

Keeping a record of sleep times led to the discovery that my daughter had developed Non-24 Sleep/Wake Syndrome. Instead of a 24 hour day her 'day' was more like 25 hours so her sleep time became about an hour later each day. A friend of mine won a Lumie Bodyclock which she didn't want so sent our way and it was an absolute game changer. It regulated her sleep pattern and gave her a better quality of sleep and she began to feel better. She has become well enough to have just completed her 2nd year of a 3 year counselling degree.

Recording what she ate revealed that while she is fine with beef minced or in burgers it upsets her stomach if she has it in bigger pieces like stews or as a roast.

What works for someone else may not work for her. She needs to know herself and find what suits her.

Thanks Cressida she does stick to foods that don't seem to affect her, she sleeps fine but wakes up tired every day. She isn't on meds as nothing helped her but hopefully the consultant appointment will prove useful.

A friend lent me a book Fighting Fatigue, written by various health professionals. She was diagnosed five years ago, is improving but still has days called boom and bust, that is a day when feeling ok, does too much and is totally exhausted the following day.
I’m five months on from a series of infections that left me exhausted. My reading is an official diagnosis doesn’t happen till six months have passed.
What used to be a busy day for me is no longer possible. I’m usually active, garden, house, dogs, friends, family. These days I only have one thing a day and still feel exhausted.
The book is useful. Our town has an
ME/CF clinic which my friend found helpful in managing the symptoms

So tough and difficult to think positively - I hope your granddaughter recovers

has days called boom and bust, that is a day when feeling ok, does too much and is totally exhausted the following day.

This is P.E.M (Post Exertional Malaise) which is the hallmark symbol of M.E. Best avoided since pushing yourself too hard can make you worse.

Cressida

*has days called boom and bust, that is a day when feeling ok, does too much and is totally exhausted the following day.*

This is P.E.M (Post Exertional Malaise) which is the hallmark symbol of M.E. Best avoided since pushing yourself too hard can make you worse.

I actually have CFS and didn’t have it til the birth of my 4th child when in my forties. It’s not the only fatigue related contrition I have but I 100% agree that pushing yourself on good days is best avoided.

The trouble is on your good days your emotional self says go go go, even though your body might be disagreeing. I know that sounds completely mad, but that’s how it feels to me.

A very good friend’s daughter developed this condition at 15, for 10 years she really struggled and she did do the things suggested, when tired she logged things, she logged all her food. On “good” days she tried to get out in the fresh air and sit in the garden. Her bad days were very dark indeed. She is now in her thirties, with a child. Strangely having a baby appeared to help! (I’m not suggesting this.) haha

It’s quite fortunate these days in diagnosis as back in the day some GPs wouldn’t even recognise it as a condition!

I do wish you and your family the best of luck moving forward. I’d say the biggest thing to watch out for is depression, it’s so easy to quickly start to feel very low about not being able to easily do things you could do previously.

Thanks everyone for the insights and information. I spent time with my Granddaughter today who was very relieved to get a physio confirm what was already a tentative diagnosis. When for 8 mths her GP kept saying try this med for 3months or lets do more tests. In the end she asked her Mum to go with her as she felt the GP was about to fob her off but at least the GP listened when Mum confirmed all my Granddaughter said. Thanks again.

I think the issue with conditions such as CFS and Fibromyalgia is that currently there are no diagnostic tools to diagnose these directly.

It’s a case of ruling out as much as possible.

It took me 10 years to be diagnosed with both of the above, after several blood tests, scans, X-rays, several GP visits, seeing a neurologist and a rheumologist and a physiotherapist. Some of these specialists I paid to see privately.

The diagnosis were a relief, whilst at the same time very frustrating as these two conditions effectively have to be “self managed”.

Thanks Cossy it’s very frustrating and I’m worried my Granddaughter is finding it all overwhelming and will find it hard to manage things. Mum is very supportive so I’m hoping they will find a way to manage the ME so she can move on and get a life because over the last months she’s hardly gone out of the house. 😥

My GS developed this as a teenager after he was very ill with
Osteomyelitis. He was in hospital for weeks, had 5 GA ‘s in 8 days to drain the abscesses and came home in a wheelchair with a drain in his leg and a nurse visiting daily to administer intravenous AB’s.
His life has never been the same .
Apart from the Chronic fatigue he has IBS , he is now 27 and all his ambition has been buried under the need to get through the days.
I am sorry to say all this but it needs to be understood just how life changing it can be.
They need lots of professional help and understanding.

The ME Association is online and could give her some insight. It also has leaflets about benefits, etc.

Usedtobeblond how sad that’s had such a devastating affect on your Grandson, it seems that life is put on hold which is hard to accept at such young ages. Is the ‘help’ easy to come by though?

Thanks ReturningFromExile I will look into that and direct her to it also.

Esther Rantzen’s daughter had ME and recovered. Google her

Thanks Humbertbear - I wasn’t aware and will look her up. I’m determined not to allow long term cf but it’s teaching me the advice on boost n boom needs heeding

For those with post viral fatigue - I was told to understand that your level of energy reserves may be only 50% of normality at very best.

Always leave sufficient energy in reserve for tomorrow.

Never spend tomorrows energy today. So gentle activity then rest for 30-1hr and so on until you have reached your limit. You should be tired but never overly so. Quality sleep is really vital, which is difficult if you are over tired.

Difficult balance I think. I’ve suffered from post viral fatigue for about 30 years, which includes total exhaustion, slight depression, bad mouth ulcers and a flu-y feeling, which provided I rested as much as possible might be better after about 10 days. Initially there was zero information but at nearly 80 I am finally understanding my bodies needs. I now no longer feel guilty when resting, or waking and feeling that today I must rest more than usual. I no longer go overboard if I wake feeling absolutely full of beans, I understand that I must always leave some energy in the bank for tomorrow.

I have recently suffered from viral bronchitis and the fatigue has finally gone after 6 weeks.

She may like to look at the info on the Pain PT site. Lots of videos there to watch too.

Whitewavemark2 brilliant post.

I agree, they have to rule out everything else to get to the diagnosis. When I was finally diagnosed in 2009 by a consultant she said I should’ve been diagnosed 20 years earlier 😳. I’m 67 next week and I still forget to listen to my body. I feel guilty when resting as I think of the jobs that need doing.

Two very good organisations provide a lot of information on ME - The ME Association and Action for ME. Also the Tymes Trust is the only organisation purely for children and young people with ME - it provides a lot of support if your daughter and grand-daughter are having problems with schooling etc. My daughter has suffered from ME since she was 15, unfortunately now 34 and still badly affected. However, the majority of people she met in the first few years have made a good recovery and gone on to lead full lives. It is really important to pace activities and not keep pushing on to do what everyone else is doing at such a busy age. If you want to DM me, please do.

In 1980 I was off work for 3 months, housebound and often bedbound. In those days the GP came every Monday morning, let himself in and came upstairs and sat on my bed. He would announce the results of my last tests (all negative) and then take more blood. Then an electrician from the theatre I worked in rang up and said "Why don't you try acupuncture?" I'd hardly even heard of it, but looked through the Yellow Pages and found one and my partner took me. I was in constant physical pain and complete exhaustion and I was walking like Mrs Overall. But I came out of that appointment standing and walking properly and pain free. That broadened my horizons and I haven't looked back. I assume what I had was ME/CFS, but it was never diagnosed. Since then I hardly use allopathic medicine but go to a homeopath or an acupuncturist or have reiki and reflexology.

I am so sorry your granddaughter has been diagnosed with ME. Unfortunately there is as yet no test for ME. It is diagnosed by symptoms and ruling out other causes for these symptoms. ME is now recognized in the governments NICE guidelines as a physical illness often triggered by a virus. Though most people recover from viruses, a small number of people remain chronically ill. Corona virus is a virus that can have this affect and people who have not recovered have been described as having long covid.. A huge study at Edinburgh University has recently shown that people who develop ME have a genetic susceptibility. Many more women and girls have this susceptibility than men and boys..

The International Consensus Criteria for ME provides the best description of symptoms. Because of the misleading name CFS, people tend to think that the main symptom is fatigue. They do not realize that people with ME can have aching muscles, headaches, light and noise sensitivity, disturbed sleep, difficulty concentrating, sore throats, nausea, dizziness and many other unpleasant symptoms. It has been described as the flu that never goes away. All these symptoms are made worse by activity, whether it is physical, emotional or cognitive. Sometimes the reaction can be delayed.

Unfortunately there is no medical cure at the moment. But the body has great healing power. There is every chance that your granddaughter will recover but it can take time. The key thing is to keep activity at a level that will not make her symptoms worse. Her recovery is the important thing now. Not pushing herself. She needs to listen to her own body and her family need to believe what she is saying about how she is feeling.

Unfortunately for many years a group of doctors, many of them psychiatrists, claimed that people with ME had had a virus but it had cleared up. They had however developed a phobia about exercise and were just unfit and could be cured by exercise, starting small but continually increasing it even as they became more and more unwell. This was disastrous and many people became extremely ill who might have recovered. Some young people were even said to want to be ill in order to avoid school or escape from life. Parents who protested that this was not their child were blamed for encouraging them to be ill. It is important to be aware of this as these views still linger in parts of the medical establishment.

The ME Association is an excellent patients support group. The Nightingale Continuum is a good face book page.

Best wishes to your granddaughter and to you all.. I know it is hard. But the love and support of your family and your belief in her, will be the greatest strength she can have behind her at the moment.

Hi tanith. I have ME myself. What I have found helpful is:

• Rest and pacing - your granddaughter should not push herself to do things. This is especially important in the early stages.
• The treatment protocol recommended by Dr Sarah Myhill. Her website is here: drmyhill.co.uk/ She has written a book that is well worth reading: Diagnosis and Treatment of Chronic Fatigue Syndrome, Myalgic Encephalitis and Long Covid.
• Prayer. I was better for seven years after prayer from a Christian organisation called Sozo Ministries international. I did relapse after that. sozo.org/

Feel free to DM me if it would help.

I think Chaitriona’s post is very good.

Some areas have local ME/CFS support groups which may be helpful.