• Welcome to Phoenix Rising!

    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 (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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All my fault?

Cheshire

Senior Member
Messages
1,129
Yes that's what say it is, burnout. They say its like you have so many stresses in a boat and you just keep adding more (relationship worries, financial, viruses) and eventually the boat sinks.

That's why they add one more stress: you are responsible for your illness, you must get rid of it...

This is just insane. If their theory were true, they should in the first place try to help you get rid of any guilt, and they do the opposite, adding to the burden. That in itself proves their so-called illness explanation is just a big piece of S..T.
 
Messages
19
Actually it turns out I've had m.e 23 years. I was diagnosed with ms all that time ago, wrongly diagnosed and only found out two years ago when I crashed that it was m.e after injecting an ms drug called copaxone everyday. Thanks NHS.

Yes I'm worrying about worrying about the m,e because ithought I wasn't doing things right. I've learnt so much this morning so I'm really grateful. I'm still jumpy when I have an m.e thought but I keep saying to myself "this is physiological not physcological". I guess it'll take time. X
 

justy

Donate Advocate Demonstrate
Messages
5,524
Location
U.K
Hi, i'm interested to hear more about your MS diagnosis - where you diagnosed by a MRI? what were/are your symptoms? do the NHS now agree you don't have M.S?

I'm asking because in the back of my mind im thinking about the possibility of infections like Lyme disease and Chronic Chlamydia Pnumoniae, which are know to cause MS like symptoms. I myself have many MS symptoms but have never been referred to a neurologist.
 

redaxe

Senior Member
Messages
230
@annedav
There is zero substantive evidence that negative thoughts cause it. Its an unproven idea, linked to unproven hypotheses and treatments. There is also no sound published evidence that these kinds of therapies work to substantially improve things.

I never understand this pyscho theory with CFS/ME. If you think about it logically its an absurd paradox.

Who out of all of us here who were hard working or studying at the time we got sick (many of us which started from flu like illnesses) and I presume in reasonably good health decided to wake up one morning and believe that we were sick? I mean its absurd. I certainly had no such attitude and I continued trying to push my body in exercise (like I'm sure many have done) but it doesn't take long before you start to realise that there is something physically wrong when trying to do a lap around an oval puts you in bed the next day for 15 hours with the worst sensation of jetlag & hangover that would knock even Phil Wenneck out of action!

Do you wake up one morning and say to yourself "Hmmm I'm going to be chronically sick for the next 5 years. I'm going to conjure up a list of symptoms and spend my days travelling from doctor to doctor wasting their time. In fact i'm even going to seek out like-minded people so we can form ourselves into little ghetto groups and start lobbying health authorities and politicians so we can get attention and our names put in the newspapers".......

I'm sure that all the doctors who told Sophia Mirza that she had a psychological condition have hung their heads in shame after her spinal cord was found to have dorsal root ganglionitis. I still can't believe that after the Sophia Mirza case people are still being told they have a psychological illness. This really is beginning to constitute patient abuse.
 

redaxe

Senior Member
Messages
230
@annedav

Can you tell us a bit more about your illness. Maybe some of us can give you some clues to help you
Did it start from a viral infection?
Do you have orthostatic hypotension? (That is it feels uncomfortable to stand still & particuarly when getting out of a chair - you feel dizzy standing up suddenly)
Do you have sinus problems. This is something that (for reasons I'm not sure of) seems to overlap a lot with ME and can exacerbate the symptoms greatly. Anything like pressure in the forehead or headaches, blocked nose & green/yellow mucous etc, environmental allergies....
Do you have IBS? It can be worth getting a check for intestinal parasites
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
I'm still jumpy when I have an m.e thought but I keep saying to myself "this is physiological not physcological". I guess it'll take time.
This is a conditioned response. Unconditioning the response will indeed take time, but its entirely do-able. Ironically you can probably use the same techniques that created the conditioning to deconstruct it.

Misdiagnosis between ME and MS is very common. People with either condition can be mistaken for someone with the other one. We do need to keep in mind though that it is likely that rare patients have both, and even that they have neither but something else that was missed.

There are measurable pathophysiological issues in ME using technology going back to 1940, but most doctors are simply unaware. There is real physiology driving our issues.

Where the psych arguments then like to hide is in two places. The first is that the mind causes the abnormal physiology. The second is that the mind exaggerates the pathophysiology, that is there is a comorbid psych disorder to go with the physical one. There is no substantive evidence of either, they are unproven hypothetical categories. There was a third place but that is dying due to the evidence - the argument that this is all in our heads, without real physical problems, is factually impossible.

The usual argument is that we did indeed have a real starter illness, but it goes away and is replaced by a psych one There is a huge hole in the evidence base for this view. The research in this area is highly unscientific, and qualifies in my view as nonscience and sometimes pseudoscience.

On the other hand in the last decade and a bit there has been advance after advance in our understanding of the pathophysiology of ME. There are brain, vascular, immune, spinal, peripheral nerve, hormonal, metabolic, and gastrointestinal issues (from the nasal cavity down to the other end). The collection of symptoms this can induce is vast. What is lacking is a provable cause, but when that happens the psych arguments made for ME will go away, just as similar arguments went away for MS.

Yet even now there are doctors who claim that MS is both a physical disorder and a psych disorder, and hide behind claims like the mind and body are connected. Yet somehow the mind affects the body, but the body affecting the mind is largely ignored. Indeed, many (including me) don't believe in mind, but consider it as a convenient and simple label for brain function. So for some decades there will be doctors who still believe ME is psych, even after the definitive science is done. Sadly, that is how this works.
 
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Messages
19
@annedav

Can you tell us a bit more about your illness. Maybe some of us can give you some clues to help you
Did it start from a viral infection?
Do you have orthostatic hypotension? (That is it feels uncomfortable to stand still & particuarly when getting out of a chair - you feel dizzy standing up suddenly)
Do you have sinus problems. This is something that (for reasons I'm not sure of) seems to overlap a lot with ME and can exacerbate the symptoms greatly. Anything like pressure in the forehead or headaches, blocked nose & green/yellow mucous etc, environmental allergies....
Do you have IBS? It can be worth getting a check for intestinal parasites
No I've had the tests orthostatic hypotension with professor Julia Newton who specialises in this and I don't have it.
No it didn't start with a virus. It started after a lot of stress. No sinus problems but chronic migraines for years. No blocked nose or environmental issues.
My symptoms are more neurological with a wired feeling all the time, can't sleep, can't stop thinking, anxiety, migraines as I said, ibs, very weak eyes - can't watch tv or read and typing this is killing me and I can't walk much at all.
I'm working with a nutritionist and I have candida and leaky gut also borderline adrenal fatigue. Not sure about parasites but will ask her.
I think the worst symptom is the weak eyes. I'm so limited so must stop now. Thanks
 
Messages
19
Hi, i'm interested to hear more about your MS diagnosis - where you diagnosed by a MRI? what were/are your symptoms? do the NHS now agree you don't have M.S?

I'm asking because in the back of my mind im thinking about the possibility of infections like Lyme disease and Chronic Chlamydia Pnumoniae, which are know to cause MS like symptoms. I myself have many MS symptoms but have never been referred to a neurologist.
I will reply tomorrow. Sorry my eyes are bad.
 

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
If someone recovered due to CBT, LP, or related "therapies", then they simply did not have ME/CFS to start with. It's nice that the treatment helped them with whatever problems they had, but it's incapable of curing or improving the physical aspects of a biological illness.
Absolutely agreed! ME is a biological illness that usually involves pathogens. Pathogens are not killed by telling yourself that they aren't there!

Thus many people are told that they have ME/CFS, but they really just have chronic fatigue caused by something else, including psychological disorders for which CBT might actually be helpful (though even that is debatable).
There is a lot of diagnostic confusion at play here. ME does not get cured by psychological therapies or rejecting your thoughts about symptoms. We think and talk a lot about symptoms here. That is how we figure out the best ways to treat them. If we rejected those thoughts, we would never take the steps that can lead to real treatment.

Yes that's what say it is, burnout. They say its like you have so many stresses in a boat and you just keep adding more (relationship worries, financial, viruses) and eventually the boat sinks but if you spend time in a healing state the ANS will relax.
Bullshit for ME. Yes, the ANS is often affected, but it is affected by a complicated pathogenic process.

Alex Howard, founder of OHC had m.e for seven years and recovered this way. I must say I do know a few people who have recovered with them as they have a forum called OHC community a bit like this one.
If they recovered this way they don't have ME. If you have tried this and it hasn't worked for you, you have something different than they had.

Sushi
 

jeff_w

Senior Member
Messages
558
Yes that's what say it is, burnout. They say its like you have so many stresses in a boat and you just keep adding more (relationship worries, financial, viruses) and eventually the boat sinks but if you spend time in a healing state the ANS will relax. Alex Howard, founder of OHC had m.e for seven years and recovered this way. I must say I do know a few people who have recovered with them as they have a forum called OHC community a bit like this one.
This line of thinking is based on faulty assumptions about this illness.

In regards to people who appear to have recovered by OHC, there are 3 possibilities:

1. Some people with M.E. have spontaneous remissions. These people might have recovered spontaneously without these "therapies." The fact that they recovered does not mean that the therapy was responsible.

2. Some people with M.E. have much less severe cases than others. It could be that people with milder cases do gain some overt symptom benefit from relaxation. They would not be cured by any stretch, but they may experience fewer overt symptoms and thus call themselves "cured."

3. Some people with milder cases might desperately "convince" themselves that the therapy is working, and then resume more activity and claim to the world that they are recovered...but they are still struggling privately. For anyone bedridden by this illness, this form of self-delusion can't work, because resuming more activity is impossible.
 
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redaxe

Senior Member
Messages
230
No I've had the tests orthostatic hypotension with professor Julia Newton who specialises in this and I don't have it.
No it didn't start with a virus. It started after a lot of stress. No sinus problems but chronic migraines for years. No blocked nose or environmental issues.
My symptoms are more neurological with a wired feeling all the time, can't sleep, can't stop thinking, anxiety, migraines as I said, ibs, very weak eyes - can't watch tv or read and typing this is killing me and I can't walk much at all.
I'm working with a nutritionist and I have candida and leaky gut also borderline adrenal fatigue. Not sure about parasites but will ask her.
I think the worst symptom is the weak eyes. I'm so limited so must stop now. Thanks

Hi. thanks for responding.

I'm certainly no-way near as knowledgeable as others are on this subject but what you can look into the following options to help with your situation. These things below are easily available to source. If they start to improve your health then over time you will probably require less of them but you can figure that out as you go along. Quite often once your health starts improving most biochemical cycles in the body will start taking care of themselves so supplementation becomes less important but these are good treatments to keep in mind for their safety & effectiveness.
There are certainly many other angles to approach this condition, particularly with regard to hidden infections in the body but the idea behind what is listed below is that is gets your body out of the slump its in so it can start taking care of itself more effectively by enhancing neurological & immune function as well as unblocking antioxidant & detoxification pathways.

-Vitamin B12 injections (As far as I know this is possibly one of the most effective and most safest ways of improving CFS/ME symptoms - Even if adequate levels of B12 are found via a blood test, there does seem to be a functional B12 deficiency in many of us & it is essential for myelin sheath health & function.
Vitamin B12 injections are well known supplement for chess players, politicians & movie stars and is widely recognised as for its critical role in optimal neurological health.

You also should look into taking a course of Vitamin B12 (Methylcobalamin) sublingual lozenges. It needs to be the Methylcobalamin form of B12 because that is the active functional form (most supplements use cyanocobalamin which is a synthetic inactive form & needs to be activated by the body (Via the Methylation Cycle) before it is useful - This form is often ineffective (possibly even harmful) for ME/CFS patients and should be avoided.)

-Methylfolate - this helps the methylation cycle along with B12 which raises levels of the antioxidant glutathione & helps in detoxification and recycling neurotransmitters as well as DNA synthesis. It is the active form of folate.
Most serum Folate blood tests measure the inactive Folic Acid. So if you've had Folic acid test it may not give you an accurate picture of how much active MethylFolate you have.

-N acetyl Cysteine (This you can take as capsules as the powder form tastes revolting). Some people report intolerance to this so start at around 300mg daily and if you don't have any tolerance issues you can build up to 1800mg daily. This is an amino acid precursor to the antioxidant glutathione which the medical literature now suggests is depleted in many chronic health conditions. Glutathione is certainly critical to neurological health and all systems in the body need it to function optimally especially the immune system.

N-acetyl Cysteine is also found to regulate Glutamate in the brain so it has a powerful effect in reducing anxiety and is now a proven treatment for a range of psychological disorders (such as obsessive compulsive disorder & bipolar depression) which are likely to be linked to poor regulation of Glutamate).
I've had long running anxiety issues which have been very successfully ameliorated by using 1200mg of NAC daily. This has been important in my situation because it certainly has made me feel more relaxed & in control of my mood & thoughts. Basically NAC has powerful anti-inflammatory effects so it certainly can improve neurological health.

- Melatonin
If you have sleep difficulties definitely consider Melatonin if you haven't already. This you will probably need a doctors prescription for. Melatonin is also an antioxidant & has anti-inflammatory properties & many of us have found benefit from low doses before sleeping. You can also consider 5-HTP as a supplement which is a biological precursor to Melatonin.

-GABA
This can be one of the best supplements for inducing sleep & relaxation. It doesn't necessarily benefit everybody as we still don't know how effectively it can cross the blood-brain barrier but in CFS/ME the blood-brain barrier is suggested to be compromised so it is likely to have some effect. Many of us (myself included) feel a strong relaxing effect about 20 minutes after consuming which can remove that 'wired feeling' in the brain & make sleep much easier.
This most likely occurs because GABA is reducing the activity of N-methyl D Asparatate which is a neuroexcitor (bascially it keeps you feeling wired & restless)

-Phosphatidyl Serine, Phosphatidyl Choline & Fish Oil
These provide building blocks to the fattyacids in the brain and they help with neurological repair & maintenance of myelin sheath.

-Iodine
I would also get your iodine levels checked & take supplementation if they are low. I don't think Iodine levels are checked as much as they should be. Also make sure zinc & magnesium are ok.
 
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taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
Being brainwashed into denying that you're ill can be quite dangerous. I recall one case of someone who had to be hospitalized due to severe disability, but kept insisting that he wasn't sick. Basically he had to be deprogrammed..

Let's not forget the UK politician who dropped dead after going to the gym as he'd been told ME/CFS was just a psychological thing so he was trying to exercise himself back to good health.

Its sad so many have been harmed esp in the UK
................

it's not that I want to focus on my symptoms as I know that would be depressing. I just don't want to jump and activate fight/flight response every time I have an m.e thought which is ridiculous.

Due to ME my adrenaline is high (nor adrenaline or whatever itscalled).. its not thoughts which have mine out of the normal ranges but for myself its postural changes (or just standing and being upright) due to the autonomic dysfunction.

There is many different reasons why ME patients get anxiety etc, not all of them psychological.
 

Snowdrop

Rebel without a biscuit
Messages
2,933
Hi @annedav Welcome to PR.

I'm sorry to hear about what you've been through in terms of trying to deal with being ill. Don't struggle with it the past will pass and you will find much info and encouragement here. I guess you could think of coming here as refocussing your thoughts on learning more about all of us and and this communities experience of ME (although there are non-ME threads too).

From what you wrote about I would encourage you to consider one thing.

No it didn't start with a virus. It started after a lot of stress.

For me the symptoms of ME came gradually and got worse over time too. I think as a result it's harder to untangle the context of how we got ill.

In my opinion after decades of observation it seems to me that we all experience stress (that parts obvious) but how we deal with it may not be simply our incompetence at managing stress the way others do. So many of life's stresses are common to all of us yet not everyone gets ME.

My point being that it's just possible that you were experiencing physical illness stressors like the migraines you describe as well as more subtle cognitive symptoms that would be difficult to measure the decline as it happens over time--slower processing of information needed to make life decisions and difficulty with making a decision or making a good decision. In other words the stress you experienced may have been the physical illness adding to the routine stress of living and that's what was stressful--coping with illness not the other way round. Just a thought to consider.

The 'lot of stress' you experienced may have been manageable and you would have gotten through it better had you not had the extra but unknown stressor of unidentified (at that time) illness.
 
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redaxe

Senior Member
Messages
230
I wouldn't be surprised if stress has some part to play in this. But I think we need to be careful how we define it.

Obviously its not as simple as a stressful day at the office can give you ME but rather how the body is reacting to stress & even causing it. It certainly is interesting at how different people respond to stress and it is not just a case of learned behavior.

I think an interesting profession are air-traffic controllers. If you think about this for a second - on any shift you have to make split second decisions due to a sudden change in circumstance that if you make an error could cause hundreds of casualties. Yet you have to remain calm and collected in every circumstance and be able to quickly calculate the correct decision that a pilot must make. That job causes a constant amount of stress but maybe the workers that do this cope because only those who can handle immense amounts of stress without suffering ill effects do the job, which most people couldn't or wouldn't want to stomach.

But it plays out in day to day life as well, even if on a smaller scale.
For instance; you get given a large unexpected project at work that you haven't done before and you aren't quite sure how to handle. Do you
a) go into mental meltdown and panic about not knowing what to do or....
b) see it as an opportunity to learn something new and to accomplish a new goal so you can meet to boast of your skills at the next performance review...

Another example. You're called in to the see the boss at work on short notice. Do you
a) start worrying that you won't have a job tomorrow or...
b) see it as an opportunity to make your achievements known so you can better position yourself in the company....

Obviously these sudden unexpected events trigger a lot of activity in certain parts of the brain. That's a no-brainer
and even more so does everyone see those 2 events as stress? Some people thrive on an unpredictable environment where life and work constantly throws up new challenges and problems... Yet others would see many of those same events as a chaotic stressful hectic job and want to escape from it.
It would be interesting to know what is going on with the neuro-endocrine/immune signalling and are there genetic or structural abnormalties in the nervous system that cause stressful events to trigger inflammatory processes or a weakening of the immune system that makes the nervous system more susceptible to viral infections especially the hidden latent viruses.

To go further what if we combine the 2 situations above with the following events occuring in the same week...

- You're boyfriend/girlfriend suddenly sends you a text message saying they're breaking up.

- The GFC has hit and the mortgage you took out on a home at $500,000 you need to repay but your home is now worth $200,000. The economy is now weak and you fear for your job.

- In the meantime a close relative has passed away.

In this hypothetical situation a person is under stress basically in every direction; nothing in life is a refuge. Again it's a no-brainer that this is a horrible circumstance and it's going to have an effect on a person but what does all this stress do underneath?
 
Messages
233
For the past two and a half years I have been very ill with cfs, bed bound for one year but mostly housebound now. I initially had treatment with OHC in London doing their 90day programme . . . still can't get it out of my head that thoughts about m.e are causing the m.e. and if only I could stop thinking, I would recover . . .
You might want to see LP DOES NOT WORK FOR ME and The Lightning Process Didn't Work For Me. Unfortunately, many have been scammed. However, your additional knowledge and experience might be able to save other people some financial/emotional pain.



You might find the IACFS/ME Primer helpful.

Researchers found 24% of CFS patients tested had HSP60 antibodies, suggesting an autoimmune disorder affecting the mitochondria, caused by a pathogen. Mitochondria are the "energy power plants" of the body. Some patients have found help through an immune drug like Rituximab.

Another interesting study:
The emerging role of autoimmunity in myalgic encephalomyeltis/chronic fatigue syndrome (ME/cfs)


Sophia Mirza was a CFS patient with dorsal root ganglionitis.

The late Dr. Rich Van Konynenburg (richvank) stated here patients are fighting continuously via the "civilians" of the immune system. Latent viruses can reactivate. Patients might have one or more infections: HHV-6, CMV, EBV, C. pneumoniae, mycoplasma, Lyme co-infections, etc. CFS patients can also have orthostatic issues such as neurally-mediated hypotension (NMH) or postural orthostatic tachycardia (POTS). As expected, patients might find help via antivirals, antibiotics, and/or vasopressors, etc. There is also palliative care with methylation treatment, d-ribose, pain meds, sleep meds, etc.



CFS is definitely not "all in your head." I'd reject such a statement. I would also recommend avoiding GET and CBT - with the exception that CBT may be useful for coping or co-morbid psychiatric conditions. Stevens et al. found CFS patients have a lower VO2max and reach anaerobic threshold earlier (we use something other than oxygen for energy, producing lactic acid). If you exercise, it must be extremely brief, with rest thereafter. We also have to generally keep our heartrate low.
 
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Messages
19
Thank you to all you lovely people who replied to my cry for help. Sorry I didn't get back on here sooner as my eyes are really weak and posting that short message made me ill for days.

I'm still struggling with it not being all in my head although I do want to believe you all so much. The trouble is I find it so hard to believe as I went from bed bound to walking miles each day within two weeks of mickel therapy. The therapist came to my home and I could barely get downstairs. She told me this was all about childhood trauma and I had PTSD. I felt like a massive load was taken off my shoulders and the difference was amazing. I painted the whole of the front of my house and went on holiday walking in the Peak District. I wasn't worried about m.e anymore. But then I suffered some stress in my life and went slowly downhill again much to the frustration of the therapist.

My daughter came home for two weeks at xmas the year before this one and I was out and about in my wheelchair everyday with no rests and I was so much better. In fact I nearly recovered there as well but as soon as she left I was ill again.

So you see this belief that the thoughts are causing the m,e is very firmly deep rooted in me. Like Dan Neuffer keeps telling me forget all about it and enjoy your life but as I say to him "how can I do that when I feel so ill". It's so difficult.

I wish I could believe you all. I really do because I am going around the bend with this one.
 
Messages
19
Hi. thanks for responding.

I'm certainly no-way near as knowledgeable as others are on this subject but what you can look into the following options to help with your situation. These things below are easily available to source. If they start to improve your health then over time you will probably require less of them but you can figure that out as you go along. Quite often once your health starts improving most biochemical cycles in the body will start taking care of themselves so supplementation becomes less important but these are good treatments to keep in mind for their safety & effectiveness.
There are certainly many other angles to approach this condition, particularly with regard to hidden infections in the body but the idea behind what is listed below is that is gets your body out of the slump its in so it can start taking care of itself more effectively by enhancing neurological & immune function as well as unblocking antioxidant & detoxification pathways.

-Vitamin B12 injections (As far as I know this is possibly one of the most effective and most safest ways of improving CFS/ME symptoms - Even if adequate levels of B12 are found via a blood test, there does seem to be a functional B12 deficiency in many of us & it is essential for myelin sheath health & function.
Vitamin B12 injections are well known supplement for chess players, politicians & movie stars and is widely recognised as for its critical role in optimal neurological health.

You also should look into taking a course of Vitamin B12 (Methylcobalamin) sublingual lozenges. It needs to be the Methylcobalamin form of B12 because that is the active functional form (most supplements use cyanocobalamin which is a synthetic inactive form & needs to be activated by the body (Via the Methylation Cycle) before it is useful - This form is often ineffective (possibly even harmful) for ME/CFS patients and should be avoided.)

-Methylfolate - this helps the methylation cycle along with B12 which raises levels of the antioxidant glutathione & helps in detoxification and recycling neurotransmitters as well as DNA synthesis. It is the active form of folate.
Most serum Folate blood tests measure the inactive Folic Acid. So if you've had Folic acid test it may not give you an accurate picture of how much active MethylFolate you have.

-N acetyl Cysteine (This you can take as capsules as the powder form tastes revolting). Some people report intolerance to this so start at around 300mg daily and if you don't have any tolerance issues you can build up to 1800mg daily. This is an amino acid precursor to the antioxidant glutathione which the medical literature now suggests is depleted in many chronic health conditions. Glutathione is certainly critical to neurological health and all systems in the body need it to function optimally especially the immune system.

N-acetyl Cysteine is also found to regulate Glutamate in the brain so it has a powerful effect in reducing anxiety and is now a proven treatment for a range of psychological disorders (such as obsessive compulsive disorder & bipolar depression) which are likely to be linked to poor regulation of Glutamate).
I've had long running anxiety issues which have been very successfully ameliorated by using 1200mg of NAC daily. This has been important in my situation because it certainly has made me feel more relaxed & in control of my mood & thoughts. Basically NAC has powerful anti-inflammatory effects so it certainly can improve neurological health.

- Melatonin
If you have sleep difficulties definitely consider Melatonin if you haven't already. This you will probably need a doctors prescription for. Melatonin is also an antioxidant & has anti-inflammatory properties & many of us have found benefit from low doses before sleeping. You can also consider 5-HTP as a supplement which is a biological precursor to Melatonin.

-GABA
This can be one of the best supplements for inducing sleep & relaxation. It doesn't necessarily benefit everybody as we still don't know how effectively it can cross the blood-brain barrier but in CFS/ME the blood-brain barrier is suggested to be compromised so it is likely to have some effect. Many of us (myself included) feel a strong relaxing effect about 20 minutes after consuming which can remove that 'wired feeling' in the brain & make sleep much easier.
This most likely occurs because GABA is reducing the activity of N-methyl D Asparatate which is a neuroexcitor (bascially it keeps you feeling wired & restless)

-Phosphatidyl Serine, Phosphatidyl Choline & Fish Oil
These provide building blocks to the fattyacids in the brain and they help with neurological repair & maintenance of myelin sheath.

-Iodine
I would also get your iodine levels checked & take supplementation if they are low. I don't think Iodine levels are checked as much as they should be. Also make sure zinc & magnesium are ok.
Hi, sorry it has taken so long to reply to your helpful email. My eyes are so weak and I wore myself out the other day on here. I've been working with a nutritionist from the OHC for past two years and take B12, NAC, melatonin for sleep, vitamin c, vitamin b complex, whey protein and veg epa. We've built up the mitachondria from only 10% energy. I have had high levels of candida but I successfully treating this and levels are lowering. Funnily enough I don't feel any better for taking all of these things. The only time I see improvement is when my daughter is home and I feel a lot more relaxed and less stressed. In fact I've glimpsed recovery a few times this way, my head has calmed down, I've slept and I've been able to walk. This is why I find it so hard to believe that it isn't the thoughts causing the m.e. Its very deep rooted and I have so much evidence that I do get better when I'm not alone with my thoughts. Best wishes Anne.
 
Messages
19
Hi, sorry it has taken so long to reply to your helpful email. My eyes are so weak and I wore myself out the other day on here. I've been working with a nutritionist from the OHC for past two years and take B12, NAC, melatonin for sleep, vitamin c, vitamin b complex, whey protein and veg epa. We've built up the mitachondria from only 10% energy. I have had high levels of candida but I successfully treating this and levels are lowering. Funnily enough I don't feel any better for taking all of these things. The only time I see improvement is when my daughter is home and I feel a lot more relaxed and less stressed. In fact I've glimpsed recovery a few times this way, my head has calmed down, I've slept and I've been able to walk. This is why I find it so hard to believe that it isn't the thoughts causing the m.e. Its very deep rooted and I have so much evidence that I do get better when I'm not alone with my thoughts. Best wishes Anne.
p.s. I can't take GABA or anything to calm neurotransmitters. I just get horrendous migraines.
P.
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
Hi all,
I'm new here and feel pretty desperate. Not sure if Im posting at right place but here goes.
I wonder if anyone can help me. Any feedback would be greatly appreciated.

For the past two and a half years I have been very ill with cfs, bed bound for one year but mostly housebound now. I initially had treatment with OHC in London doing their 90day programme which consists of 'stops' (like lightening process saying stop to thoughts), meditation, eft and relaxation. I've paid a small fortune and none of it has helped. In fact I developed a phobia to m.e thoughts and still can't get it out of my head that thoughts about m.e are causing the m.e. and if only I could stop thinking, I would recover. I am in such a stressed out state about it all and get such bad anxiety every time an m.e pops up, its just making me feel so ill. I've also spent the best part of two years meditating and relaxing which isn't working at all.

I came across this website and realised that maybe it's not all my fault after all. Maybe im not responsible for causing m.e with my thoughts. I definetly won't be helping myself being in an anxious state all of the time but it seems to me that you guys on here have so many other ideas about what is causing m.e.

I've tied myself in knots for years about this trying to get out of my head by practising mindfulness and the power of now by being present fully but I just can't do it.

Maybe this illness isn't my fault after all?
I'd be so grateful if anyone could help me.
Warm wishes.

It is not your fault. Many of us have suffered from this belief for years - even decades - from ourselves, from friends, from family, from doctors, from other authorities...

I have had periods of doubt myself, when I wondered whether it really was my fault, or in my mind, etc.

I know now that it isn't. It's a huge burden of injustice that is heaped onto us on top of the illness we are already suffering.

EDIT - one of the best things we have found for gut-healing is to cut out gluten. Non-fermented milk also seems to be a problem for many.
 
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