Chronic Fatigue Syndrome

Posted on Fatigue

Immune T cells become exhausted in chronic fatigue patients

Self-help tips to fight fatigue

According to a new Cornell University study, chronic fatigue syndrome creates conditions where pathogen-killing immune T cells become exhausted.

The study’s authors were aware that the immune system is dysregulated in patients with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Still, they sought to identify which specific components were affected by the condition. Through a systematic exploration, they discovered that key CD8+ T cells exhibited one of the most significant signs of dysregulation. These cells showed evidence of continuous stimulation, which ultimately leads to an exhausted state—a phenomenon that has been extensively studied in cancer.

“This is an important discovery for ME/CFS because it allows us to examine T cells more closely. By investigating the exhausted cells, we hope to gain insights into what they are responding to,” said Andrew Grimson, a professor of molecular biology and co-corresponding author of the study. Maureen Hanson, a molecular biology and genetics professor, is the corresponding author.

“Therapies have been developed to reverse T cell exhaustion as treatments for cancer,” Hanson stated. “Our findings raise the question of whether these anti-exhaustion drugs could also be beneficial for ME/CFS.”

Hanson added that there is strong evidence for T cell exhaustion in ME/CFS, which has also been observed in long COVID.

“According to Hanson, immune cells from patients with ME/CFS showed elevated levels of surface proteins that are typical of exhausted cells. This exhaustion can result from prolonged exposure to a viral protein or ongoing stimulation of the immune system, a condition also observed in cancer patients.”

Future work will try to determine whether a virus is involved, which is currently not known. “We need to understand what is pushing them to this exhausted state,” Grimson said.

The team also plans to take cells from patients and controls, purify those cells, treat patients with drugs that reverse exhaustion, and see if the immune cells resume normal function. If CD8+ T cell exhaustion can be reversed, the next question is whether such reversal benefits a patient, as exhaustion can have protective qualities.

1 Comment Posted on Cognitive dysfunction, Fibromyalgia, Multiple Sclerosis

Does the cold weather make your brain fog or fibro fog better or worse? Find out what others think here…………..




Cognitive dysfunction (also called brain fog , fibro fog or clouding of consciousness) was a big topic in the early days of Patient Talk.

Brain fog

Brain fog

And at the same time we were also interested in the impact of the reasons ( and the weather) on pain levels. You can see the results of our poll on the subject here.




So I was very interested when Kelly asked “Since the weather has changed to cold, my cognitive function is getting way worse, where I can’t get words out of mouth. Does anyone else experience this the cold?” in our Multiple Sclerosis group yesterday morning.

The feedback was very interesting.

Tracet replied “Yes. Does anyone else have trouble getting people to understand this happens to you? I think people are starting to assume I’m just an idiot, even after explaining cognitive dysfunction.”

For Roberto it is the other way round ” I experience this but it happens when the weather gets warm”.




” Definitely far worse with the cold, I like the heat, thought I was strange as the ‘norm’ is the opposite. I practise Bikram Yoga in the heat which helps me a lot, my neurologist freaked when I told her, but now she thinks its wonderful!” was Brendan’s suggestion.

But for Kristine “I love all the seasons. snow and sun are both fun! Humidity is my killer…”.

No the other hand for Charlene ” For me it is the extreme weather. Extreme cold and heat both make it worse. Of course extreme is a relative term! Lol extreme heat is like 80 and extreme cold is like below 45. Lol”.

But for some ” Doesn’t matter what season it is my mind is one purr muddle I nix up words loose train if thought an forgot what a conversation is I stair in to space like no one is home …but hay I can’t argue with anyone as I forget what has made me mad !!! The joys hay”

So what about you?




Even better could you share your story in the comments section below.

Cognitive dysfunction refers to the loss of intellectual functions such as reasoning, memory , and general thinking which together impair day to day living.. People with brain fog have difficulty with verbal recall, basic arithmetic, and overall concentration.

It can be caused by a variety of medical conditions which include multiple sclerosis, fibromyalgia (hence the term fibro fog), lupus, chronic fatigue syndrome, depression, hypothyroidism, Lyme’s disease and stress. What is interesting , at least to me, is how many of these disorders are auto-immune conditions.

Many thanks in advance for all your help!

Posted on Fatigue

Living with Chronic Fatigue Syndrome (ME/CFS)




Image result for Living with Chronic Fatigue Syndrome (ME/CFS)




I’ve wanted to do this video for a while, to try to explain what it’s like to live with ME/CFS. I thought it would be a good idea to do it whilst I have ‘brain fog’, to better illustrate what it’s like for me when I’m exhausted- that’s why I’m talking so slowly!




Leave a comment Posted on Fatigue

Chronic Fatigue Syndrome – what are the possible treatments?




Chronic fatigue syndrome (CFS)

Chronic fatigue syndrome (CFS)

Treatments for CFS/ME aim to help relieve your symptoms.




Your treatment will be tailored to your symptoms. Early diagnosis, taking medication to control certain symptoms, and making lifestyle changes can all help.

CFS/ME can last a long time, but most people’s symptoms will improve with time.

Some people make a full recovery and can return to their previous activities. Others continue to have symptoms or periods when their symptoms get worse.

Treatment plans for CFS/ME

There’s no single way of managing CFS/ME that works for everyone, but there are a number of treatment options.

The National Institute for Health and Care Excellence (NICE) says you should be offered a treatment plan tailored to your symptoms.

Your doctor should discuss all of the options with you, and explain the benefits and risks of any treatment.

They should work with you to develop a treatment plan that suits you and takes into account your circumstances and preferences.

You may need advice about making lifestyle changes, specialist treatments, or a combination of both.

If your symptoms are severe, your doctor should ask a specialist for advice.




Your treatment plan should be reviewed regularly.

Specialist treatments

There are a number of specialist treatments for CFS/ME.

Cognitive behavioural therapy (CBT)

If you have mild or moderate CFS/ME, you should be offered cognitive behavioural therapy (CBT).

CBT is a talking treatment that can help you manage CFS/ME by changing the way you think and behave.

It can help you to:

accept your diagnosis

feel more in control of your symptoms

challenge feelings that could prevent your symptoms improving

gain a better understanding of how your behaviour can affect the condition

Your CBT therapist will ideally have experience of dealing with CFS/ME and treatment will be offered on a one-to-one basis.

Using CBT doesn’t mean CFS/ME is considered to be a psychological condition. It’s used to treat a variety of long-term conditions.

Graded exercise therapy (GET)

Graded exercise therapy (GET) is a structured exercise programme that aims to gradually increase how long you can carry out a physical activity.

It usually involves exercise that raises your heart rate, such as swimming or walking. Your exercise programme will be adapted to your physical capabilities.

GET should only be carried out with the help of a trained specialist with experience of treating CFS/ME and, if possible, it should be offered on a one-to-one basis.

After finding out what you can already do comfortably, the length of time you exercise and the intensity will gradually be increased.

As part of your exercise programme, you and your therapist will set goals, such as walking to the shops or doing some gardening. It may take weeks, months or even years for you to achieve these goals, but it’s important not to try to do too much too soon.

Activity management

Activity management involves setting individual goals and gradually increasing your activity levels.

You may be asked to keep a diary of your current activity and rest periods to establish your baseline. Activities can then be gradually increased in a way you find manageable.

Medication

There’s no specific medication for treating CFS/ME, but medication can be used to relieve some of the symptoms.

Over-the-counter painkillers can help ease headaches, as well as muscle and joint pain. Your GP can prescribe stronger painkillers, although they should only be used on a short-term basis.

You may be referred to a pain management clinic if you have long-term pain.

Antidepressants can be useful for people with CFS/ME who are in pain or having trouble sleeping. Amitriptyline is a low-dose tricyclic antidepressant that may be prescribed to help ease muscle pain.

NICE has more information and advice about specialist CFS/ME care.

Lifestyle changes

As well as specialist treatments for CFS/ME, making lifestyle changes can also help.

Diet and supplements

It’s important you eat regularly and have a healthy, balanced diet. You should be offered practical advice about how to achieve this if, for example, your CFS/ME symptoms are making it difficult for you to shop or prepare food.

If you feel sick (nauseous), eating starchy foods, eating little and often, and sipping drinks slowly may help. If this doesn’t work, medication can be prescribed.

Diets that exclude certain food types aren’t recommended for people with CFS/ME. There’s also insufficient evidence to recommend supplements, such as vitamin B12, vitamin C, magnesium, or co-enzyme Q10.

Sleep, rest and relaxation

You may have sleep problems that make your CFS/ME symptoms worse. For example, you may:

have problems getting to sleep

have unrefreshing or restless sleep

need an excessive amount of sleep

sleep during the day and be awake at night

You should be given advice about how to establish a normal sleeping pattern. Having too much sleep doesn’t usually improve the symptoms of CFS/ME, and sleeping during the day can stop you sleeping at night.

You should change your sleep pattern gradually, and your doctor should review how it’s going regularly. If your sleep doesn’t improve after making changes, you may have an underlying sleep problem that will need to be addressed.

It’s likely you’ll need to rest during the day, and your doctor should advise you about the best way to do this. For example, they may suggest limiting each rest period to 30 minutes and teach you relaxation techniques, such as breathing exercises.

If you have severe CFS/ME and need to spend much of your time in bed, it can cause problems, including pressure sores and blood clots. These problems, and how to avoid them, should be explained to you and your carers.

Other lifestyle changes to manage CFS/ME

Other ways to manage CFS/ME include:

equipment – some people may need a blue badge for parking, a wheelchair, a stairlift, or other adaptations for their home

changes in your place of work or study – when you’re ready and well enough to return to work or studies, your doctor should be able to advise you on changes that could ease your return

There’s limited or no evidence to recommend:

pacing – this is a technique that many people with CFS/ME find helpful for managing their symptoms; the general aim is to balance rest and activity to avoid making your fatigue and other symptoms worse, but there hasn’t been enough research into pacing to confirm whether it improves CFS/ME or has any risks

resting completely – there’s no evidence this helps

complementary medicine – there isn’t enough evidence that it’s helpful for CFS/ME

You shouldn’t take up vigorous unsupervised exercise such as going to the gym or for a run as this may make your symptoms worse.

NICE has more information on managing CFS/ME

Setbacks or relapses

A setback or relapse is when your symptoms get worse for a period of time.

They’re a common part of CFS/ME and can be caused by a number of factors, such as an infection or an unplanned activity. Sometimes there’s no clear cause.

The doctors treating you can help you manage a setback or relapse by:

including more breaks with your current levels of activities

teaching you relaxation and breathing techniques

encouraging you to be optimistic about your recovery

NICE has more information and advice about managing setbacks and relapses.

Leave a comment Posted on Fatigue, Patient Talk

Lightning Process could help with chronic fatigue syndrome a new study suggests




Chronic Fatigue Syndrome

Chronic Fatigue Syndrome

Lightning Process ‘could help children with chronic fatigue syndrome’, study claims

“Controversial Lightning Process ‘helps children with chronic fatigue syndrome’,” reports The Guardian.

The story is based on a UK study investigating whether a treatment called the Lightning Process helped teenagers being treated for chronic fatigue syndrome (CFS), also known as ME (myalgic encephalomyelitis).




The study randomly split 100 young participants into two groups: those who received standard CFS/ME treatment and those who received the standard treatment plus the Lightning Process (LP).

LP treatment involved an intensive three-day group-therapy course aiming to teach participants how to use their brain to improve their body’s health.

Researchers found those who received the LP were more active, less tired and less anxious after six months. At 12 months, they also had improved depression scores and school attendance.

However, this therapy is not recommended by the NHS, which currently suggests behavioural and exercise therapy for people with CFS/ME.

There are an estimated 250,000 people affected by chronic fatigue syndrome in Britain, according to the ME Association charity.

It’s not known what causes CFS/ME, but there are a number of theories, such as it being triggered by an infection.

Living with the condition can be difficult, with extreme tiredness and other symptoms making everyday activities challenging.

As well as support from family and friends, it might also be useful for people with CFS/ME to talk to others with the condition and perhaps find a local support group.

Where did the story come from?

The study was carried out by researchers from the University of Bristol and the University of Nottingham in the UK. It was funded by the National Institute for Health Research and two charitable trusts: The Linbury Trust and The Ashden Trust.

The study was published in the peer-reviewed medical journal Archives of Disease in Childhood, part of BMJ Journals, and is free to read online.

The media reporting of this study was generally accurate, but the Daily Telegraph’s suggestion that the therapy helps children get back to school cannot be certain – there are a range of possible explanations for why children in the LP therapy group had better school attendance.

What kind of research was this?

This was a randomised controlled trial involving teenagers who had been diagnosed with CFS/ME. They were randomised to receive either usual care, or usual care plus the LP.




The LP is a therapy developed from osteopathy, life coaching and neurolinguistic programming (a behavioural psychotherapy that “retrains the brain”), and is used for a variety of conditions.

CFS/ME is a long-term illness with a wide range of symptoms, the most common being extreme tiredness.

It can also cause sleep problems, concentration problems, muscle or joint pain, headaches, a sore throat, flu-like symptoms, feeling dizzy or sick, or a fast or irregular heartbeat.

Current accepted treatments in the UK health service include cognitive behavioural therapy (CBT); a structured exercise programme called graded exercise therapy; and medication to control pain, nausea and sleep problems.

What did the research involve?

The researchers randomised 100 children aged 12 to 18 with diagnosed CFS/ME to receive either specialist medical care (SMC) or SMC plus the LP, and followed them up at 3, 6 and 12 months.

There were 51 participants in the SMC-only group. The SMC focused on improving sleep, and using activity management to establish a baseline level of activity (including school attendance, exercise and social activity) that was then gradually increased.

Sessions were delivered by professionals such as doctors, psychologists and physiotherapists. The number and timing of sessions were agreed with the teenager and their family.

There were 49 participants in the SMC-plus-LP group. In addition to the same SMC, they attended an LP course consisting of three different sessions, lasting four hours each, on consecutive days. They attended in groups of two to five.

The first was a theory session looking at:

stress response

how the mind and body interact

how thought processes can be positive or negative

This was followed by a group session in which participants were asked to think about what they could take responsibility for and change.

The third was a practical session in which participants were asked to choose a goal they wished to achieve, such as being able to stand for a longer period of time. They were given different thinking strategies to perform before and during attempting to achieve the goal. They also chose a further goal, to be attempted at home.

Each participant was offered two follow-up phone calls.

Outcomes assessed were:

physical function, measured using the 36-Item Short-Form Health Survey Physical Function Subscale (SF-36-PFS)

quality of life using quality-adjusted life years (QALYs), measured using the EQ-5D-Y standardised instrument

fatigue, using the Chalder Fatigue Scale

pain, using the Visual Analogue Scale (VAS)

anxiety and depression, using the Hospital Anxiety and Depression Scale (HADS)

school attendance (days per week)

child’s use of health services, educational services or health-related travel, and other family costs, using a questionnaire

What were the basic results?

At six months after randomisation, data from 81 participants showed that those in the SMC-plus-LP group were:

More active

They had better physical function compared with the SMC-only group according to the SF-36-PFS scale of 0 to 100, where lower scores indicate worse physical function. The SMC-plus-LP group’s average increased from a baseline of 53 to 81.7, and the SMC-only group’s increased from 56 to 70.2 (adjusted difference in means 12.5, 95% confidence interval [CI] 4.5 to 20.5).

Less fatigued

They had less fatigue, scoring 14.4 compared with 19.8 in the SMC-only group on a scale of 0 to 33, where higher scores indicate more fatigue (adjusted difference in means 4.7, 95% CI 7.9 to 1.6).

Less anxious

They had greater improvement in anxiety symptoms as measured by the HADS (scored from 0 to 21, with higher scores indicating worse symptoms) than the SMC-only group. The SMC-plus-LP average score was 6.1, compared with 9.0 for the SMC-only group (adjusted difference in means 3.3, 95% CI 5.6 to 1).

At 12 months after randomisation, data from 79 participants showed that the SMC-plus-LP-group were:

More active, less fatigued and less anxious

They still had better physical function, less fatigue and improved anxiety symptoms compared with the SMC-only group.

Feeling better

The SMC-plus-LP group also had greater improvement in depression symptoms on the HADS – scored from 0 to 21, with higher scores indicating more-severe symptoms (adjusted difference in means -1.7, 95% CI -3.3 to -0.2).

Attending school more often

School attendance, as measured by attendance in the previous week, was better for the SMC-plus-LP group, at 4.1 days on average, than the SMC-only group’s 3.1 days (adjusted difference in means 0.9, 95% CI 0.2 to 1.6).

How did the researchers interpret the results?

The researchers concluded: “This is the first randomised trial investigating the effectiveness of the LP for any condition. It is the first trial that has demonstrated the effectiveness of an intervention other than CBT for paediatric CFS/ME.

“The addition of the LP to SMC improved physical function at 6 and 12 months in adolescents with CFS/ME and this difference increased at 12 months.”

Conclusion

The results from this very small randomised controlled trial showed that people having LP therapy in addition to usual CFS/ME care had improved physical function, fatigue and anxiety symptoms at six months, and improved school attendance and depressive symptoms at 12 months.

However, there are a number of limitations to this research that need to be considered:

Participants in both groups improved, so both treatments were effective to some extent.

This was a very small trial, and the results analysis involved fewer than the 100 people recruited. It would need to be repeated in a much larger group to demonstrate more robust findings.

A number of outcomes were looked at, so it was very likely that some of them would return positive findings by chance – the improvements might not have been due to the LP therapy.

Participants were not blinded – they were aware of the group they were in; therefore, their self-reported outcomes might have been biased. They may have been more likely to report positive outcomes because they knew they were getting additional therapy in the LP group.

Of all those eligible to participate in the trial, fewer than 30% agreed to take part. The reason why the majority didn’t want to is unknown.

As the LP therapy was given in addition to the usual CFS/ME care, it certainly cannot be suggested as a replacement for the current usual care.

There’s no single way of managing CFS/ME that works for everyone and, if you have the condition, you should be offered a treatment plan based on your symptoms. Your doctor should discuss all options with you and make you aware of any benefits and risks.