To wonder how many people have CFS/ME?

[millionsmissing]

Recently a close family member has been diagnosed with ME. It's an awful illness that is stealing her youth.

She doesn't speak about it because of the stigma and lack of any available treatment or research into possible treatment.

She has resigned herself to having to live with this condition, probably for ever. She went from being active, fit and doing a job she loved to being unable to read, drive, hold a conversation without losing the thread of what she was saying. This happened, quite literally, overnight.

When she was first diagnosed she learned that many people with this condition find themselves so ill they are unable to get out of bed for years. She is lucky in that she is not as ill as many people are. But she doesn't know if she will ever again be able to hold down any full-time job, let alone one that allows her to use the skills she has worked hard to develop.

It's an invisible illness.
No-one sees her when she is feeling really unwell. She stays in her room, with the lights dimmed, and the heating on, whatever the weather, wearing the big jacket she no longer needs for mountaineering. She has all the kit for this illness, hats, gloves, down jackets and sleeping bags - she never thought they would be used for this.

Most people have no idea how ill she is, she only sees them when she is well enough to power through on adrenaline.
She doesn't look ill. People are constantly telling her how glad they are she is better when she is well enough to socialise. She has stopped telling them she isn't because they can see for themselves that she looks fine and so they assume she is either lazy or a hypochondriac.

But the energy used on not looking ill costs her days as she recovers enough energy to function again. She often finds herself without the energy to stand up for long enough to have a shower.

So AIBU to wonder how many others suffer from this condition and to be outraged that we are not researching like crazy to find the biomedical causes of this illness that is stealing the lives of so many?

[Nightshirt]

@woodYoubeHappy, just briefly, I hope the dictation software helps you. There is a dictation feature on my iPad but I can't use it as it increases my chronic head pain just as much as typing does. When typing is very limited so is dictating.

[Nightshirt]

@WoodYouBeHappy, just to say sorry I have not responded. Have not been good. Hope you are as ok as you can be.

[CFSKate]

bump as the event begins in half an hour.

[CFSKate]

Today only, until funds run out, Bill Gates Foundation is matching donations to the Open Medicine Foundation

www.facebook.com/events/129717027707749/

The match will begin at 8AM EST (5AM PST). (Thats 1PM in the UK)

Note that last year, the Gates $900,000 matching fund limit ran out in a couple hours. Help OMF raise this additional $50,000 match by donating early on November 28.

[WoodYouBeHappy]

Hello hello! There's some excellent advice being shared on here, well done you lot.

Thanks for your wishes @Nightshirt. I'm lucky really in that I have some respite in the Spring and do get to leave my bed then. Long may that continue. I can't imagine how frustrating it is for you to be confined and so unwell for so many years. I do hope you have all the right support in place by now. I have often wished for someone to type for me when I'm incapacitated. I don't think many realise how isolating it is to not be able to communicate with people, especially when you're in pain. That also goes for many other debilitating conditions.

I'm looking at speech to type software at the the moment for if/when I need it again. It's so difficult to get the balance right with ME/CFS isn't it? When I'm in a terrible relapse, I need to reach out on the internet and know I'm not alone. Emotionally it's brilliant, physically and cognitively it's such an overwhelming effort to do, I then have to live with the consequences. It's like being perched on a set of scales

Will keep looking in on this thread occasionally and sending everyone positive vibes, even though I won't be here typing so much. I feel much better when I'm not on the internet!

[Nightshirt]

@Bananasaregood, glad butterfly56 has given you lots of good advice. The most recent CFS BMJ Best Practice Guide (has flaws but another issue) lists hypopituitarism as a medical exclusion for CFS. Definitely worth checking out. Good luck.

Will try and attach photo with the text in the BMJ guide.

[butterfly56]

Hi BananasAreGood
I hope it gives you some answers.

[butterfly56]

Hi BananasAreGood
To cut straight to your question how to get referred....

I took the DM article to my GP and asked her to refer me to an Endocrinologist(I googled Pituitary Specialist in Lancashire(my area) as not all Endos deal with the Pituitary).

There are some really good Pituitary Specialist Endos in UK just Google your area.

GP said that she did not think I could have Pituitary damage because I was not ill enough(I have had severe CFS symptoms for since 2003).

Anyway I said "Can I go and see this particular Endo( I named him) she said "Yes but don't get your hopes up"!

Got appt to see him within 6weeks.(Late 2015)
I had written him notes/timescale of symptoms plus letter as I cannot hold a conversation with anyone for long without forgetting what's going on!

I thought he would tell me that there was no truth in the rumour that head injury and CFS are related(that's put in layman's terms as I can't think of the professional words at the moment(brain fog as you know)

He said "It is well documented world wide that people presenting with CFS/ME symptoms, like yourself, following serious head injury can have damage to the Pituitary Gland."

He then went on to say that "The first hormone that is likely to show up deficient is Adult Growth Hormone" "There are 2 tests required for this The Glucagon Stimulation Test and the Insulin Tolerance Test"
Here are the Nice Guidelines
www.nice.org.uk/guidance/ta64

Here is the Questionnaire that patients have to fill in for treatment

www.nice.org.uk/guidance/ta64/documents/questionnaire-quality-of-life-assessment-of-deficiency-in-adults2

And a couple of articles...

www.ncbi.nlm.nih.gov/pmc/articles/PMC4519801/

www.ncbi.nlm.nih.gov/pmc/articles/PMC4524578/

I failed both tests and was diagnosed with Severe Adult Growth Hormone Deficiency caused by severe head injury. I was gobsmacked tbh as I never thought for one moment it would be all in my head after all!!!

My GP was amazed because she had never come across a patient in 30years with this problem.

I also have hypothyroidism(this started in 2008). TSH is produced by the Pituitary Gland(or not as the case may be)

Also there are some FB groups to do with Adult Hormone Deficiencies and there are a few people on there from all over the world with head injuries from falling off horses, so we are not alone. (I am not on FB anymore as I'm not well enough to do all the interaction).

Sorry it's a bit long and convoluted but hope this information helps you
Bananas and if you have any questions you can PM me if need any more help

[Nightshirt]

@CallingPeopleACuntonFB, what lovely words about your best friend. I bet she thinks you are awesome too.

[Rachie1986]

I have/had it.

I consider myself 95% recovered but still have to be careful.
I had it from 16-21ish. Various rough patches since then (10yrs). Never as bad as a lot of people get.

[CallingPeopleACuntOnFb]

Nightshirt she’s awesome and my best friend. Over the years So many of her other “friends” have just walked away. I won’t.

[Nightshirt]

@CallingPeopleACuntonFB, you sound a good friend to your friend with ME. I treasure the friends who stuck by me and believed I was physically ill. Most pwme have experienced judgement and stigma. I hope that is slowly starting to change.

[Nightshirt]

This video by Professor Van Ness while somewhat long and you may need to watch in segments will explain a lot more about what we know about how the system is broken.

Finally, Dr Tuller, journalist and lecturer at Berkeley has been challenging the flawed UK PACE trial recommending GET and CBT for the last 18 months. Today he has written a good piece on how the updated British Medical Journal guide on CFS and ME hopefully signals a sea change here in the UK. However, he rightly warns "prejudices (and paradigms) die hard, and the PACE-influenced U.K. medical and academic establishment is deeply entrenched."

www.virology.ws/2017/11/13/trial-by-error-the-surprising-new-bmj-best-practice-guide/

[Nightshirt]

@Eenymeeny123, I am sorry to hear that E, it does sound like you are experiencing PENE as described in the ME ICC criteria, but obviously I can't diagnose. The problem is UK doctors have had little to no training on ME and patients often know more about the research and definitions than the doctors. The BMJ have at least just updated their BMJ Best Practice guide on ME this month which is an improvement and recognises post exertional problems and dangers of graded exercise. Link here (mainly behind a paywall) bestpractice.bmj.com/topics/en-gb/277

The NHS CFS clinics cant offer much and steer clear of any that offer harmful graded exercise therapies (some of London ones particularly do this as a Kings and Maudsley are the seat of the flawed bps model of ME as opposed to biomedical model of ME, but they may be able to give you a diagnosis. Could you ask your GP to refer you to one?

Things to understand with authentic ME, not just chronic fatigue:

Oxygen exchange system and energy production system is impaired. If you push outside of what they can do that can cause harm. That's the crux of the "exercise" issue. While we all may have varying abilities to be active, we are all impaired.

Some have found a heart rate monitor helps them know their limits better. This link gives some info on the US Workwell Foundation that advise on how to do this me-pedia.org/wiki/Workwell_Foundation

The broken part of our system is in the aerobic part. We go into aerobic at about 90 seconds. So... short bursts of activity are safest.

Pushing is the most dangerous thing you can do. Understanding that resting the system so it can recover IS doing something important. Resting and pacing has been shown to be the best way to possibly be able to build up to doing a little more, but having realistic expectations (and making sure everyone around you has realistic expectations) will help you have the best outcome.

[CallingPeopleACuntOnFb]

My best friend has ME

It’s absolutely shit for her and the judgement she gets from people is unbelievable 😔

[Eenymeeny123]

Thanks Nightshirt I had a good look at it and said yes to a lot of the questions. I tried to start doing a small walk recently for about 10-15 minutes. The first day was enjoyable but needed to rest afterwards, the second day I struggled with pain and general tiredness and by the third day I gave up half way through and practically crawled home. The rest of the week I was wiped out.

[Nightshirt]

@Eenymenny123 and @MindWillingBodyNotsoMuch. I have seen a few doctors claim that fatigue is the major symptom in ME and pain in fibromyalgia. The problem with this is fatigue is not the cardinal feature of ME but post exertional symptom flare up, rapid muscle fatigue and neuro immune symptoms. Also both nerve and muscle pain can feature in ME. I have ME and bad nerve and muscle pain (not in specific trigger points) but don't view I have fibromyalgia on top of my ME. To confuse things some I believe can have both ME and fibromyalgia

My understanding is though people with fibro can have fatigue it is not the equivalent to the post exertional neuro immune exhaustion you see in ME which is research is indicating is due to underlying metabolic dysfunction. For example some with fibro find some exercise helps, aerobic exercise in ME is either not possible or has to be done in small amounts.

@Eenymeeny123, the 2011 ME criteria identify ME patients the best in absence of a diagnostic test. If you look at this link to the ME you can see if your symptoms match ME. www.meadvocacy.org/the_international_consensus_criteria_what_is_it_do_i_fit_the_criteria

[Eenymeeny123]

Thanks mind( I don't know how to bold it either ) I'm like you, the pain is very bad some days but the tiredness seems worse lately. Going back to the doctor, as feeling so bad most days.

[MindWillingBodyNotSoMuch]

Eeny just figured out how to do it! Yey me

[MindWillingBodyNotSoMuch]

Eeny (don't know how to bold it, sorry).
I have been very recently diagnosed with both. I believe the difference is that with M.E. the fatigue is the overwhelming symptom over the pain but with Fibro the pain is worse than the fatigue. However, with fibro you can also get "trigger points".

For me the defining symptoms of pain and fatigue are worse on different days/weeks/months but I know when it's a fibro flare when my trigger points hurt without touch.

Hope that makes sense through the fog

[Eenymeeny123]

That's meant to read fibro not five

[Eenymeeny123]

Can I ask what is the main difference between ME and fibromyalgia. I was diagnosed with five over a year ago. I have a lot of pain but the tiredness is flooring me. I feel drained and exhausted alot of the time. I have to rest after doing the shopping or hoovering. I'm finding doing stuff harder and harder but don't want to stop in fear and will end up never leaving the house. I'm so tired of being tired and in pain. The doc is putting all this down to the fibro but could it be ME aswell.